PSPA Podcast

00:00:30 Helen

Welcome to the PSPA Podcast.

00:00:33 Helen

I’m Helen Chapman, PSPA’s Communication Manager.

00:00:37 Helen

Today on the PSPA Podcast, we are going to be discussing eye care.

00:00:42 Helen

from general ongoing care for your eyes for everyone to problems people living with PSP and CBD can experience, we will be discussing them all.

00:00:52 Helen

To help provide information and tips on eye care for you, we are welcoming consultant orthoptist Dominic Burdon to the podcast.

00:01:11 Helen

Welcome, Dominic.

00:01:13 Dominic

Hi, Helen.

00:01:14 Dominic

Thank you for having me on the podcast.

00:01:15 Dominic

It’s an honour to be here.

00:01:17 Helen

No, thank you for joining us.

00:01:19 Helen

So before we delve into the topic of eye care, I was wondering if you could do a little bit of an intro, please.

00:01:27 Helen

Share a little bit about what your role is and how you provide support and care for people living with PSP and CBD.

00:01:36 Dominic

Yes, so I’m an orthoptist.

00:01:38 Dominic

I work at the Royal Eye Infirmary in Plymouth, and I run a specialist clinic for patients with complex eye movement disorders.

00:01:46 Dominic

In this clinic, we use equipment called an eye tracker to assess eye movements to a high degree of accuracy, and we work closely with the neurology department, with patients with neurodegenerative conditions.

00:02:00 Dominic

So a number of our patients that we see in the clinic are cases of PSP and CBD, and we kind of help investigate, diagnose and manage these cases.

00:02:10 Helen

Fab.

00:02:11 Helen

So could you help to explain the difference between an optician, an orthoptist and an ophthalmologist, please?

00:02:20 Helen

Because there’s a few different professionals that could be involved in people’s eye care.

00:02:27 Dominic

Yes, absolutely.

00:02:28 Dominic

It’s a question that we get asked a lot.

00:02:31 Dominic

And all of these professionals will be involved in the care of someone with PSP or CBD.

00:02:36 Dominic

But an optician is basically an expert in prescribing glasses.

00:02:42 Dominic

So they’ll do the checks to see what the strength glasses are and offer different options, whether it’s single vision lenses or bifocal lenses, which I’ll talk a little bit more about later, which is quite important with patients with

00:02:55 Dominic

PSP and CBD.

00:02:58 Dominic

Ophthalmologists are experts in eye health issues, and they will manage the overarching care of the patient.

00:03:07 Dominic

And you might see different ophthalmologists because they specialise in different things.

00:03:11 Dominic

So for example, you might see a neuro-ophthalmologist that assesses eye movements, or you might also see a oculoplastics ophthalmologist who specialises in lids.

00:03:24 Dominic

And then orthoptists, we’re experts in eye movement disorders.

00:03:28 Dominic

So our job is to test eye movements and pick up any eye movement issues with the eyes or with the lids.

00:03:38 Helen

Well, thank you.

00:03:39 Helen

That is really useful to know.

00:03:41 Helen

I didn’t know the difference myself.

00:03:44 Helen

So it’s a really great, easy to understand explanation.

00:03:50 Helen

In terms of being an orthoptist, as you are yourself, and you’ve spoken a little bit how you work with neurology departments to help provide care and support for people living with conditions like PSP and CBD.

00:04:07 Helen

I was wondering if you could explain what the main eye problems are that people living with PSP will commonly experience.

00:04:16 Dominic

Yeah, absolutely.

00:04:18 Dominic

Yeah, the orthoptist’s role is to pick up these eye conditions and treat what we can.

00:04:25 Dominic

And also we can track, we can pick up these eye conditions and record them over time to see if there’s any progression.

00:04:34 Dominic

And the final thing that’s really important when managing these cases is to ensure that the patient and the family has all the information available to them, how the eye movement problem will affect them and how they can

00:04:48 Dominic

compensate for those issues.

00:04:51 Dominic

Broadly speaking, the issues will involve how the patient moves their eyes and how they use their lids.

00:05:00 Dominic

Specifically with patients with, I’ll talk about PSP first.

00:05:03 Dominic

So PSP patients will have something called slow velocity vertical saccades, which is basically a fancy word for saying they will struggle to move their eyes up and down.

00:05:17 Dominic

And it affects the vertical eye movements before the horizontal eye movements, usually will be late stage when it starts to affect moving the eyes horizontally.

00:05:28 Dominic

And that’s because of the part within the brain that is affected initially.

00:05:34 Dominic

They will also have vertical supranuclear gaze palsy, which is quite a characteristic sign in PSP.

00:05:41 Dominic

And this is basically where they

00:05:44 Dominic

They struggle to move their eyes up and down, but rather than it being slow, they’re just not able to move in the elevated or the depressed positions.

00:05:56 Dominic

And the reason why PSP is called progressive supranuclear palsy is because most of these patients will get a vertical supranuclear gaze palsy.

00:06:07 Dominic

And supranuclear basically means that these patients

00:06:12 Dominic

voluntarily won’t be able to move their eyes, but involuntarily they will be able to move their eyes.

00:06:16 Dominic

So if you get the patient to look up and down, they will struggle to do that.

00:06:20 Dominic

But if you move their head to get them to move their eyes using the vestibular response, they will be able to move their eyes.

00:06:28 Dominic

And that basically means that some of the supranuclear pathways are getting to the area of the brain that are needed to move the eyes, but other pathways are not working.

00:06:42 Dominic

properly.

00:06:42 Dominic

So they will also get something called convergence insufficiency, where they struggle to move their eyes in and out.

00:06:54 Dominic

Other issues involve issues with the lids.

00:06:56 Dominic

So one lid issue is reduced blink rate, which is where instead of blinking, a typical blink rate would be

00:07:09 Dominic

about 14 per minute, but in patients with PSP, they only blink about twice per minute.

00:07:16 Dominic

And this can lead to issues with dry eye.

00:07:19 Dominic

So there’s things that we can do for that to help ease those symptoms.

00:07:27 Dominic

Other lid issues include blepharospasm, which is where the lids kind of spontaneously contract.

00:07:32 Dominic

And again, there’s things that we can do for that as well.

00:07:35 Dominic

I’ll talk about that a little bit later.

00:07:40 Dominic

And the final lid thing that they experience is lid opening apraxia, which is where they are not able to open their eyes after closing them.

00:07:49 Dominic

So they might kind of raise their eyebrows and try and force their lids open.

00:07:57 Dominic

The final thing that these patients can get is square wave jerks, which is where they their eyes

00:08:04 Dominic

oscillate and it’s hard to see to the naked eye, but when we assess it on the eye tracker, we can see that their eyes are kind of jerking back and forth.

00:08:12 Dominic

And if these are quite large and quite frequent, then it can disrupt their fixation and disrupt their vision.

00:08:19 Dominic

When it comes to CBD, these patients do experience some issues consistent with PSP, but they tend to be kind of less severe and later on in the disease course.

00:08:33 Dominic

These issues do cause debilitating symptoms for the patient, and these include double vision as well as the dry eye that I mentioned before.

00:08:47 Helen

And is it only an orthoptist that would notice these types of symptoms establishing, or could an optician pick up signs

00:09:01 Helen

during a routine eye check?

00:09:04 Helen

we all get called in about every two years just to double check.

00:09:08 Helen

Can they pick up anything to make relevant referrals?

00:09:12 Dominic

So an optician will certainly be able to pick up and manage the dry eye.

00:09:19 Dominic

In terms of these eye movement issues, they’re quite rare and opticians will struggle to identify these eye movement issues without

00:09:29 Dominic

a referral to an orthoptist.

00:09:31 Dominic

So it’s really important if they have any concerns that there’s a PSP picture or if there’s any kind of eye movement issue, it’s important that the patient is referred into the local eye department and they can do a full examination of the eye movements and pick up each individual eye movement and manage them accordingly to help ease those

00:09:53 Dominic

symptoms the patient might experience and provide all the kind of information and support that’s necessary.

00:10:01 Helen

And would you get a referral to an orthoptist from an optician or could you get it via your GP?

00:10:10 Dominic

Either is fine.

00:10:12 Dominic

Yeah, you can go through your GP, you can go through your optician.

00:10:15 Dominic

The majority of our referrals actually come from neurology.

00:10:18 Dominic

And that’s because a lot of patients are initially diagnosed with Parkinson’s disease, but then the neurologist finds that there’s maybe something else going on with their eye movements, which you wouldn’t usually expect with Parkinson’s disease.

00:10:33 Dominic

So that’s why that’s why the majority of our patients come through neurology.

00:10:40 Dominic

And then we do our assessment and write a letter back to the neurologist with our information.

00:10:46 Dominic

who will then kind of use that information to consider a different diagnosis other than Parkinson’s disease.

00:10:54 Helen

So you’ve mentioned Parkinson’s.

00:10:58 Helen

So how does the changes in eyes differ from what someone might commonly see in a Parkinson’s diagnosis?

00:11:08 Dominic

Yeah, so with Parkinson’s disease, it doesn’t really affect the eye movements too much.

00:11:14 Dominic

They might also have square wave jerks, which is where the eyes kind of oscillate a little bit.

00:11:19 Dominic

They might also have convergence issues where they struggle to move their eyes inwards.

00:11:28 Dominic

And the other thing that Parkinson’s disease patients might have is issues with tracking, which we don’t tend to find with patients with PSP or CVD.

00:11:40 Dominic

So yeah, slightly they have

00:11:43 Dominic

very different eye movement issues, quite minor and slightly different with Parkinson’s disease and certainly mid to late stage with PSP or some CBD patients, the eye movement issues are quite severe and quite debilitating.

00:12:00 Helen

What treatments and support is out there for anyone living with PSP and CBD that

00:12:07 Helen

starts to experience these issues with their eyes.

00:12:11 Dominic

Yeah, so with double vision, we can, the orthoptist can manage that for the patient.

00:12:17 Dominic

We can offer prisms to help join the two images back together.

00:12:21 Dominic

We can offer occlusion in different forms to help kind of block off one side so they’re not experiencing the double vision.

00:12:30 Dominic

This can come in the form of frosting or

00:12:33 Dominic

a patch or even an occlusive contact lens if that’s suitable for the patient.

00:12:41 Dominic

In terms of the dry eye, the main solution for that is eye lubricants, which can be purchased over the counter at the pharmacy.

00:12:51 Dominic

And we recommend using preservative-free eye lubricants because that means that they can use them as much as they like throughout the day.

00:13:01 Dominic

For the blepharospasm, there’s good research, good literature and good evidence supporting the useful Botox injections.

00:13:11 Dominic

So there’s good evidence that that can help for the blepharospasm as well.

00:13:20 Dominic

And as I mentioned before, we find that probably the most important treatment that we can give to patients and families is just the information and support.

00:13:30 Dominic

around how these issues will present to the patient at the different stages and how to get around these issues at home in daily living activities.

00:13:44 Helen

In terms of any treatments and aids like the prism glasses, would they get these from you or are there other avenues that they can access the treatments?

00:13:59 Dominic

So it depends what type of prism glasses are required, but the PSP Association do offer a certain type of prism glasses which help the patient look down without, or see down without having to look down.

00:14:15 Dominic

So these can help for patients that struggle to look downwards.

00:14:21 Dominic

So for certain tasks such as reading or kind of eating, these glasses can sometimes help.

00:14:27 Dominic

And in terms of the other optical appliances, they will have to come from the local eye department.

00:14:35 Dominic

So any other prisms, anything like that will come from the eye department.

00:14:42 Dominic

And one thing that’s really important with patients with PSP or CBD with a vertical eye movement problem is that

00:14:49 Dominic

bifocals or varifocals will not work because if they struggle to move their eyes up and down, they will also struggle to use the different parts of the lenses.

00:14:59 Dominic

So it’s really important with these patients that they have single vision lenses and a high street optician can prescribe those.

00:15:07 Dominic

But if the high street optician is also is not aware of the eye movement issues, then they might not

00:15:13 Dominic

fully understands that, which is why it’s I would always recommend these patients to be seen within the eye department where they could get a multidisciplinary approach.

00:15:23 Dominic

They could see the optician and the orthoptist at the same time.

00:15:28 Dominic

Pretty much all eye departments have an optician working within the eye department as well.

00:15:33 Helen

That’s good to know.

00:15:34 Helen

And also really useful information about the buried focals, because that’s something probably wouldn’t consider, especially if you’ve been

00:15:41 Helen

been using them for a while before these symptoms develop.

00:15:45 Helen

You mentioned about keeping on top of any changes and ensuring that people know how the symptoms might develop and when.

00:15:57 Helen

As part of that, should people be attending orthoptist appointments on a regular basis and what is

00:16:07 Helen

a regular basis?

00:16:08 Helen

Like how often should they come to appointments?

00:16:12 Dominic

Yeah, that’s a really good question.

00:16:14 Dominic

I think it depends on the patient.

00:16:17 Dominic

It depends on kind of how symptomatic they are, how well they’re coping with those symptoms, and how severe their eye movement issues are, and also how quickly the eye movement issues are progressing.

00:16:32 Dominic

So that will probably change depending on the patient, how soon they should be seen.

00:16:38 Dominic

But we tend to see our patients kind of between three and six months to monitor them for progression and also to ensure that they’re kind of as comfortable as possible with regard to

00:16:53 Dominic

their eye movement problems.

00:16:56 Dominic

But if they’re deteriorating more rapidly and if they’re quite symptomatic, then we will see them more regularly.

00:17:04 Dominic

And we might also see them with different clinics as well, with different professionals, depending on who is most suitable for that patient.

00:17:14 Helen

Have you got any tips for how people can look after their eyes in between appointments?

00:17:22 Dominic

Yeah, so it’s really good for us to know if things are changing at home.

00:17:27 Dominic

So I always ask our patients and our family to the families of the patients or the carers to look out for any changes in their vision, any changes in their eye movement issues.

00:17:45 Dominic

And I often will urge the patients to kind of

00:17:50 Dominic

do inform people if they have any new symptoms or any new new concerns and and let the eye department know and the the eye department can then review and get the patient in a lot sooner.

00:18:05 Dominic

Another one of the things that can be continued at home is the the drops and that’s one thing that will kind of ease those symptoms of of dry eye.

00:18:15 Dominic

So we recommend that those are kind of

00:18:19 Dominic

put in regularly.

00:18:22 Dominic

Up to four times a day is fine, although if the eye drops are preservatives free, then they can be put in more regularly.

00:18:30 Dominic

So those are the kind of things that can be done at home.

00:18:35 Dominic

And also kind of encouraging the use of optical devices and ensuring that they are trialled at home and yeah,

00:18:48 Dominic

try to see if they help with the symptoms or not.

00:18:51 Dominic

Sometimes they do, and sometimes they cause more problems than they actually solve.

00:18:56 Dominic

So it’s good to encourage the use of those optical devices so the patient can understand if they’re helpful or not.

00:19:06 Helen

Are there alternatives if, say, for example, someone gave

00:19:12 Helen

prism glasses a go to help with, you know, tasks like you said, like eating or it might even help with, you know, getting dressed, you know, putting a belt on and stuff.

00:19:22 Helen

Are there other options if something like that didn’t work for them?

00:19:28 Dominic

Yeah, so usually we start off with prisms because that enables, so if we can join the two images together, it enables the eyes to work together again.

00:19:37 Dominic

But usually because with PSP and CBD it’s progressive, the prisms will often only work for a certain amount of time.

00:19:45 Dominic

And we actually find that a lot of our patients prefer occlusion.

00:19:50 Dominic

So rather than kind of joining the two images back together with a prism, kind of blocking off one side with some frosting or some patching often is more comfortable for our patients.

00:20:04 Dominic

So yeah, we have kind of different options, really, when it comes to managing symptoms.

00:20:09 Dominic

And if one optical device is not working, then it’s it’s really important that the patient and the family get in touch with us and say, this is not quite right.

00:20:20 Dominic

It’s not working.

00:20:20 Dominic

We’ve tried it.

00:20:22 Dominic

Please, could we try something else?

00:20:24 Dominic

And in a lot of cases we will get the patient back in and review.

00:20:31 Dominic

or alternatively, what we could do is

00:20:34 Dominic

sometimes, in some cases, send out some other options in the post.

00:20:39 Helen

That’s quite reassuring to know that.

00:20:42 Helen

because I guess, like, if when you issue different devices, there can be a bit of a panic.

00:20:47 Helen

If something doesn’t work, it doesn’t sort of suit you well, that you’ve got to try and force it.

00:20:55 Helen

But to know that there are

00:20:57 Helen

other options out there, it means that, you know, it is reassuring to know that there are different things people can try.

00:21:05 Dominic

Yeah, we understand that people have different lifestyles.

00:21:09 Dominic

Some people might do a lot of close work, some people might get out and do more activities outside.

00:21:17 Dominic

So, yeah, optical devices does depend on the lifestyle of the patient and the

00:21:24 Dominic

some patients get on well with some and other patients need to find an alternative.

00:21:30 Dominic

So yeah, it’s about kind of taking each patient as an individual and sometimes it is the case of a bit of trial and error, trying different things and seeing what works for the patient.

00:21:45 Dominic

So that, yeah, unfortunately that does mean that sometimes it’s difficult to find the perfect solution straight away.

00:21:53 Dominic

But yeah,

00:21:54 Dominic

good communication with the patients and the families and with the eye department is really crucial to ensure that the patient is as comfortable as possible.

00:22:03 Helen

Because obviously people can have issues with their eyes that aren’t necessarily related to PSP or CBD.

00:22:13 Helen

How would someone know the difference between what is related to their condition and what isn’t?

00:22:22 Helen

Would the orthoptist

00:22:23 Helen

cover all elements of care or would they just focus on the PSP or CBD elements and they’d go to the high street optician for anything else?

00:22:36 Dominic

Yeah, so with PSP and CBD, the eye movements will be affected.

00:22:41 Dominic

So we expect there to be symptoms associated with that.

00:22:46 Dominic

We don’t expect the visual acuity or the clarity of the vision to be affected.

00:22:52 Dominic

So it’s really important that if there are concerns that there’s any visual distortion or visual acuity is reduced, there’s some blurry vision, that suggests that there might be something else going on, so a different eye condition.

00:23:09 Dominic

It might just be as simple as the glasses need updating, but it could also mean that there’s a– could also be that there’s a different eye condition.

00:23:19 Dominic

So in these cases, again, really important to contact the eye department.

00:23:24 Dominic

And this is where we’re very fortunate in the eye department to have these different professionals that we can work with.

00:23:31 Dominic

So if we have a concern that maybe the glasses do need updating, we can arrange for the patient to see an optometrist at the eye department.

00:23:40 Dominic

If there’s a concern something else is going on, we can book for the patient to be seen by an ophthalmologist to check the health of the eye and

00:23:48 Dominic

invest fully investigate that and treat that issue.

00:23:53 Dominic

So yeah, in terms of the issues that we expect at home, we expect there to be eye movement issues and hopefully they’re managed already.

00:24:04 Dominic

But if there’s any issues with the vision, then it’s important that the eye department is notified and we can get that fully investigated.

00:24:12 Dominic

Usually if a patient is under the

00:24:16 Dominic

eye department.

00:24:17 Dominic

They will have assessments with the optician at the eye department, but not necessarily.

00:24:25 Dominic

It might be that they’re perfectly happy going to their optician for glasses checks.

00:24:29 Dominic

They’re the high street optician and then the rest of the eye care is supported within the eye department.

00:24:36 Helen

If you spotted anything, you might make a recommendation to go back to your optician or make a referral to the relevant professional.

00:24:44 Dominic

Exactly.

00:24:45 Dominic

Yeah.

00:24:46 Dominic

So we’ll, in some cases, we give them the option.

00:24:49 Dominic

Would you like to go to an optometrist at the eye department or go back to your high street optician?

00:24:56 Dominic

Sometimes they find it more convenient to go to their high street optician because then they can go back to that optician for any repairs or replacements for the glasses.

00:25:07 Dominic

Or another option is you get the, have the test done at the eye department, but then get the glasses made-up at the optician.

00:25:15 Dominic

So, yeah, there’s lots of different kind of options with regard to that.

00:25:20 Dominic

And yeah, we quite often sit down and offer the patient what we can do and they can decide what is best for them.

00:25:31 Helen

So if they are seeing different eye professionals, so

00:25:35 Helen

they’ve got their optician that they go to regularly for their glasses or contact lenses, but they’re seeing an orthoptist as well.

00:25:46 Helen

How can someone who’s living with PSP or CBD ensure

00:25:51 Helen

that it’s kind of all joined up, that the different eye professionals know about their condition and how that might affect them.

00:25:59 Dominic

Yeah, it’s really important for the optician at the high street to know the diagnosis and also understand the eye movement issues.

00:26:11 Dominic

So what we usually, what we suggest is after our assessment, we write a clinic letter explaining everything.

00:26:20 Dominic

and that will go to the patient.

00:26:21 Dominic

And we advise if they are keen to go to the high street optician for examinations, we advise they take the clinic letter with them to the appointment so the optician is aware and also to ensure that the patient, the family, the carer informs the optician of the history.

00:26:42 Dominic

And usually the

00:26:45 Dominic

we would expect the optician to do a case history anyway and find out that information.

00:26:50 Dominic

But just to be on the safe side, it’s definitely worth informing the optician of that history.

00:26:59 Dominic

And also in terms of us getting the information from the optician, it’s great if we can also get a copy of their report as well.

00:27:09 Dominic

Unfortunately, there’s no, the information is not put on the same system

00:27:13 Dominic

So we have to rely on getting both and receiving reports.

00:27:18 Dominic

But that is, there’s one argument for potentially keeping everything within the eye department because all of the notes within the eye department are kind of kept on one system.

00:27:28 Dominic

So we’re all, we’re all aware of what’s going on with the patient.

00:27:32 Dominic

But we understand that sometimes that’s not very convenient having regular glasses checks at an eye department because some,

00:27:40 Dominic

of our patients travel a long way.

00:27:42 Dominic

And we do realise that these patients that might struggle with their mobility will find it difficult to come to appointments.

00:27:53 Dominic

So we try and we do also try and get appointments on the same day.

00:27:56 Dominic

So if a patient needs to see an orthoptist and an optician or an orthoptist and an ophthalmologist, we try and book it as a joint appointment as well for that reason to make it as easy as possible for the family.

00:28:08 Dominic

And

00:28:10 Dominic

If a family does receive different appointments at different dates at the same eye department, it’s worth maybe contacting the eye department and asking if it’s possible to get them on the same day, because a lot of the time you can shuffle appointments around and it could be an option.

00:28:29 Helen

That’s good to know.

00:28:31 Helen

There are some opticians, I think, that do some home testing as well, but obviously that would just be

00:28:40 Helen

for your sight problems if you need glasses or contact lenses.

00:28:47 Dominic

Yeah, that’s another really good option as well.

00:28:49 Dominic

Yeah, you have domiciliary opticians that can come out and do the assessment.

00:28:54 Dominic

Again, it’s just important that they have all the background history when they do come out for the assessment.

00:29:01 Helen

If

00:29:02 Helen

It’s not all within one department.

00:29:05 Helen

How do people ensure that the optician or the eye professional does have all the relevant background information?

00:29:14 Dominic

So that comes back to us writing a clinic letter with all the information and asking the patient and the family to give that to the optician when they come out to kind of ensure that they have the information.

00:29:32 Dominic

So that would be the best solution to give them the clinic letter, which has the information from the most recent up-to-date assessment with us.

00:29:44 Helen

As well as your local optician and the hospital-based eye care that people might receive support from, are there any other charities or organisations that people could get some support from?

00:29:58 Dominic

There are, yeah, there’s some really great vision charities in England.

00:30:03 Dominic

So for example, there’s the RNIB, See Ability, there’s Guide Dogs.

00:30:09 Dominic

So there’s lots of these vision charities that offer amazing support for patients that have vision issues.

00:30:18 Dominic

There’s also

00:30:20 Dominic

charities that can provide audiobooks as well.

00:30:23 Dominic

So patients with PSP and CBD, they might struggle to read because of their issues with moving their eyes or their issues with tracking.

00:30:34 Dominic

And this can mean that audiobooks are more suitable for these patients.

00:30:40 Dominic

So there’s, I think the RNIB and your local library can offer audiobooks to these patients.

00:30:49 Dominic

And these patients really value that because a lot of them are avid readers.

00:30:54 Dominic

And when they lose that, it really, really affects their quality of life.

00:30:59 Helen

Yeah, I agree.

00:31:00 Helen

I’ve heard that.

00:31:01 Helen

We actually, PSPA work with RNOB to ensure that, you know, our quarterly magazine is also available as audio files.

00:31:13 Helen

And they’ve also been kind of helping us to ensure the website is accessible as possible and would

00:31:19 Helen

work with any assistive technologies that people might use if they do have some eye issues.

00:31:27 Dominic

Brilliant.

00:31:29 Helen

Do you have any final advice for anyone living with PSP or CBD?

00:31:35 Dominic

So my final advice probably would be to don’t feel you have to kind of deal with your ovular symptoms alone and if you do have any

00:31:46 Dominic

concerns, do pass it on to your carers, your family, your local eye department.

00:31:51 Dominic

And although we cannot cure the cause of the eye issue, we can kind of treat the symptoms and ensure you are able to kind of use your vision to the best of your ability at every stage of your disease.

00:32:05 Dominic

So please do contact your eye department and we can offer as much support as we can to help.

00:32:15 Dominic

alleviate those those symptoms that you’re experiencing.

00:32:20 Helen

Brilliant, thank you.

00:32:20 Helen

Really appreciate you talking to us today.

00:32:25 Helen

It’s been really informative.

00:32:26 Helen

And hopefully, all our listeners have picked up some tips and information that will help with their eye care.

00:32:42 Helen

If

00:32:42 Helen

If anyone’s got any questions about anything that’s been discussed in this podcast, you can get in touch with our helpline by emailing helpline@pspassociation.org.uk, or you can call them on 0300 0110 122.

00:33:04 Helen

Thank you.

00:00:32 Helen

Welcome to the PSPA Podcast.

00:00:35 Helen

I’m Helen Chapman, PSPA’s Communication Manager.

00:00:39 Helen

And today I’m here to discuss driving and getting about after being diagnosed with PSP or CBD.

00:00:46 Helen

This is a common question that our helpline here.

00:00:50 Helen

And as we thaw from the winter months, getting out and about more is often on our minds.

00:00:57 Helen

So to help plan your day-to-day errands,

00:01:01 Helen

days out or even a holiday away.

00:01:03 Helen

We’ll be discussing driving and other ways you can assure you can get about safely.

00:01:19 Helen

To help Dave into this subject, I am joined by Dionne Ward from the PSPA helpline.

00:01:26 Helen

Welcome, Dionne.

00:01:28 Dionne

Hello, Helen.

00:01:30 Helen

So before we get started in discussing the topic, I was wondering, it’d be great if you could quickly cover what you do in your role as a helpline care navigator, please.

00:01:43 Dionne

Yes, so I support people across Wales who have been diagnosed with progressive supranuclear palsy or corticobasal degeneration, as well as supporting their carers, family or loved ones.

00:01:56 Dionne

I also support healthcare professionals in the form of telephone or e-mail advice or education sessions.

00:02:05 Dionne

Recently, I’ve been part of running a PSP and CBD clinic in Newport and Swansea areas as well.

00:02:12 Dionne

So yeah.

00:02:15 Helen

Oh, fab.

00:02:17 Helen

Good to hear about supporting the clinic.

00:02:20 Helen

So anyone listening might and is located in that area might get to meet Dionne face to face.

00:02:28 Helen

So getting back to the subject of the podcast, driving and getting about.

00:02:35 Helen

Following a diagnosis, we regularly hear from individuals and families who want to discuss whether or not they should still drive.

00:02:44 Helen

Once someone has received a diagnosis and they are a driver, what should they do?

00:02:50 Helen

Should they contact the DVLA straight away?

00:02:54 Dionne

Yeah, well, legally, the person is required to inform their insurer and the DVLA of their diagnosis.

00:03:02 Dionne

And failure to inform the insurer may invalidate the policy.

00:03:06 Dionne

So it is important.

00:03:08 Dionne

This does not mean that your license will automatically be withdrawn immediately, though.

00:03:13 Dionne

The DVLA will probably ask the GP or consultant for a medical report to ensure that the person is still safe to drive.

00:03:22 Dionne

However, dependent upon the symptoms, it may be possible for the person to continue driving with PSP and CBD until symptoms change.

00:03:32 Dionne

The person may find that they want to stop driving before then, as driving may become more challenging and they may not feel actually safe doing so.

00:03:41 Dionne

There is further information on the DVLA medical inquiry site on the gov.co.uk to look at as well.

00:03:49 Helen

So if during a report from a GP it’s recommended that someone should stop driving but the individual still feels safe being a driver, is that a decision that can be appealed?

00:04:05 Dionne

Yes, it is.

00:04:05 Dionne

You can challenge a GP’s advice to stop driving.

00:04:10 Dionne

It’s not actually the GP that legally revokes the license.

00:04:13 Dionne

That decision is the responsibility of the DVLA.

00:04:17 Dionne

So you can also get a second opinion from another doctor if you aren’t happy with what the first doctor has written to the DVLA.

00:04:29 Dionne

So you could get a second opinion and it actually would be the DVLA that made the decision about whether you have your license revoked or not.

00:04:39 Dionne

However, what I would say is obviously the GP’s advice does need to be taken seriously.

00:04:44 Dionne

So make sure you have a full and frank conversation with your GP about your symptoms.

00:04:49 Helen

Okay, thank you.

00:04:51 Helen

I agree that it is a difficult decision to make.

00:04:57 Helen

to stop driving because I know people can feel like there’s a big loss of independence, but it is definitely something to take seriously.

00:05:08 Helen

If they were recommended to stay driving, would they have to take a driving assessment in order to continue driving?

00:05:18 Dionne

The DVLA will sometimes require a person to attend a driving centre and to be assessed for their ability to drive safely.

00:05:27 Dionne

The assessment may include things such as, has PSP or CBD affected your driving ability?

00:05:34 Dionne

Can you judge distances accurately?

00:05:37 Dionne

Do you experience confusion regarding the rules of the road?

00:05:41 Dionne

Things like, are you able to physically and mentally act quickly in the event of an emergency?

00:05:49 Dionne

And they will be assessing your safety and the safety of those around you.

00:05:53 Helen

Yeah, that’s a lot.

00:05:55 Helen

a lot to think about then in that assessment.

00:06:00 Helen

If people are allowed to continue driving with their PSP or CBD diagnosis, could they access support from a scheme like Motability?

00:06:11 Helen

What is Motability and what is the criteria for applying?

00:06:17 Dionne

So Motability is the scheme that allows people on certain benefits to enjoy a new car or a scooter or a powered wheelchair without the worry of owning or running one.

00:06:28 Dionne

I think they say at the moment around 600,000 people with disabilities and their families are benefiting from this scheme.

00:06:35 Dionne

So it’s obviously a worthy scheme to look at.

00:06:40 Dionne

The eligibility element of that

00:06:44 Dionne

So you can apply to join the mobility scheme if you receive an enhanced rate of mobility under the PIP, which is Personal Independence Payment.

00:06:55 Dionne

If you get the higher rate mobility under the part of the Disability Living Allowance, the DLA, the enhanced rate mobility part of the adult disability payment, which is available in Scotland,

00:07:12 Dionne

Also in Scotland, it would be the higher rate mobility component of the child disability payment.

00:07:20 Dionne

Also, if you have the War Pensioners Mobility Supplements, which is the abbreviation is WPMS, and the Armed Forces Independent Payment, AFIP,

00:07:36 Dionne

You need to have had at least 12 months left on your allowance if you’re applying to join the scheme.

00:07:42 Dionne

And you can check your award length on your allowance award letter, or you can contact your allowance provider and they will let you know.

00:07:53 Dionne

So there’s also a driving assessment grant, DAG.

00:07:57 Dionne

DAG is grant funded scheme supported by Motability Foundation.

00:08:02 Dionne

to assist drivers with disabilities who are not mobility, Motability customers.

00:08:09 Dionne

So this grant can help towards the costs of driving assessments or vehicle adaptations and familiarisation lessons at a driving mobility centre.

00:08:22 Dionne

That grant is available to disabled people who receive certain state benefits or are on low incomes.

00:08:29 Dionne

So if you contacted your local driving mobility centre, they can discuss that a little bit more with you.

00:08:36 Dionne

That grant aims to pay for a driving assessment at the mobility centre and recommend any vehicle adaptations.

00:08:45 Dionne

They are one of payments and any future maintenance alterations or updates relating to any adaptations are not covered.

00:08:53 Dionne

So it’s worth bearing that in mind.

00:08:56 Helen

I didn’t know about that second grant that you’ve mentioned, so that’s definitely worth knowing about.

00:09:02 Helen

But in terms of eligibility for either Motability or that grant, it does seem like it depends very much on the individual circumstances.

00:09:14 Helen

If you are unsure, if you are eligible for Motability, you can

00:09:19 Helen

Get in touch with the PSPA helpline.

00:09:21 Helen

He’ll be able to talk through the criteria with you.

00:09:24 Helen

And if you would be eligible, you can contact the helpline on 0300 0110122.

00:09:36 Helen

Moving on from schemes that can help with the assisting with purchasing a car or driving assessments,

00:09:48 Helen

or adaptations onto more accessibility to parking.

00:09:54 Helen

Can people diagnosed with PSP or CBD apply for the Blue Badge scheme?

00:10:00 Helen

What does that scheme enable people to do?

00:10:04 Helen

And do you have to be the driver in order to apply for the Blue Badge scheme?

00:10:10 Dionne

So the Blue Badge scheme is a UK based scheme and it provides special parking rights for people with severe mobility issues or hidden disabilities.

00:10:20 Dionne

So what it does is it allows them to park closer to destinations, often in disabled bays or on yellow lines for limited times.

00:10:29 Dionne

So please bear that in mind, but without charge.

00:10:33 Dionne

They’re normally administered by local councils.

00:10:37 Dionne

Particularly helps people with conditions like severe walking difficulties or certain mental health issues, whether driving or as a passenger.

00:10:47 Dionne

And yes, people who have been diagnosed with PSP or CBD can apply for the Blue Badge scheme.

00:10:53 Dionne

However, not everyone will be eligible.

00:10:57 Dionne

Some people may automatically qualify for the scheme if they meet certain criteria, such as

00:11:04 Dionne

the person receives a higher rate disability allowance under the mobility component, or the person receives the personal independence payment or PIP, scoring eight plus for moving around, or 10 for planning and following journeys as part of the PIP assessment.

00:11:23 Dionne

If the person is registered blind,

00:11:26 Dionne

if they receive war pensioners mobility supplement or if they receive a lump sum benefit from the Armed Forces Compensation Scheme.

00:11:35 Dionne

That comes under tariffs level 1 to 8 and if they have a permanent impairment preventing them from walking.

00:11:44 Dionne

If anyone falls into these categories, I mentioned it before, but they can apply directly at gov.uk or they can give us a call on the helpline at PSPA.

00:11:55 Dionne

Some people might be eligible if they have the inability, if they have severe walking difficulty, so the inability to walk or considerable difficulty in their walking, if they have a hidden disability such as autism, dementia or anxiety, if they have an arm disability, so severe disability to both arms, or if they have a personal, if they have, sorry, if they have a terminal illness.

00:12:25 Dionne

So that would be a life-limiting illness and that would be accompanied by an SR1 form.

00:12:31 Dionne

So that would be something to discuss with a GP.

00:12:35 Dionne

If anyone falls under these categories that I just mentioned, they can apply for the Blue Badge scheme online.

00:12:42 Dionne

That would be via their council and the council may arrange for an assessment with a healthcare professional.

00:12:48 Helen

Thanks, Gion.

00:12:49 Helen

I think it’s really

00:12:50 Helen

helpful to know that you don’t have to be the driver in order to apply.

00:12:56 Helen

This means that any carers or families who regularly drive around with their loved one living with PSP or CBD can apply to the scheme to help with getting out and about so that you can access better parking bays.

00:13:18 Dionne

Yeah, it makes such a huge difference to families and to people with these conditions.

00:13:23 Helen

Definitely can take the worry out of having to navigate a long distance from, say, a car park to the shop’s entrance or a doctor’s surgery entrance.

00:13:37 Helen

So it is a great scheme.

00:13:41 Dionne

One thing I would say, Helen, is that often I speak to people maybe in the earlier stages of their diagnosis who don’t want to apply for the blue badge for various reasons.

00:13:51 Dionne

And that is absolutely okay if you don’t.

00:13:53 Dionne

But what I would say is, as early as you can, get that application in for the blue badge, because it does make a huge difference to getting out and about.

00:14:02 Helen

Yeah, and it can obviously take time to process that application before you

00:14:11 Helen

receive the blue badge if you’re successful.

00:14:16 Helen

And we always recommend, don’t we, to try and get on top of things as early into the diagnosis as possible so that everything’s all in place for when you actually do need it if you don’t need it at that moment.

00:14:31 Dionne

Yeah.

00:14:33 Helen

So if someone can’t drive anymore, what recommendations are there?

00:14:39 Helen

that they can, so that they can still get about and still be part of their community, see their friends and families, do their errands.

00:14:49 Dionne

So the first thing probably we would ask is, are there any friends and family or neighbours or loved ones who can drive?

00:14:59 Dionne

And to have a chat with those people around you and see if they can support you to get out and about.

00:15:08 Dionne

And and if if it’s if the difficulty is getting in and out of a car, then adaptation adaptations may help that.

00:15:16 Dionne

So for example, you can get seats that that twist.

00:15:19 Dionne

So it might be that you have a seat that twist that goes in other people’s cars when they when they take you out.

00:15:26 Dionne

That would be something to ask the occupational therapist about actually if if it is that somebody else is taking you out about.

00:15:32 Dionne

and getting in and out of a car is difficult.

00:15:35 Dionne

But yeah, I’d say the first port of call normally is we would say, is there anyone around you, friends, family, loved ones, neighbours, that you might be able to ask and get support from?

00:15:46 Dionne

There are things like community transport services and these are very different in different areas.

00:15:52 Dionne

So I would highly recommend calling your helpline care navigator at PSPA to have a chat about these.

00:16:00 Dionne

They will be able to help you see what is in your area, work out what local transport services there are.

00:16:07 Dionne

You can also search on the gov.uk website for community transport services and shop mobility and you pop your postcode in.

00:16:17 Dionne

some areas there are private drivers who will take you to a place and wait and bring you back.

00:16:23 Dionne

There would be a cost to that.

00:16:25 Dionne

and they are sometimes hard to find.

00:16:27 Dionne

Again, I would recommend speaking to your helpline care navigator at PESPA or any support groups you go to, any healthcare professionals you might see or any local networks that you might have because they might know in your area what local transport there is.

00:16:49 Helen

I know in my area, so I live in Northamptonshire, there’s a volunteer driver scheme available.

00:16:58 Helen

I think you pay like an annual membership fee and then you pay a subsidised amount for your journeys.

00:17:06 Helen

And that’s there to kind of help you get to medical appointments, dentist appointments, or go and get your shopping, bits like that.

00:17:17 Helen

And they can be

00:17:18 Helen

really useful schemes to join up to.

00:17:22 Dionne

And there’s some areas there are, I cover Wales and where I live, we have an organisation called Pavo who are a voluntary organisation and you can phone their helpline and they know what community transport is in the area.

00:17:37 Dionne

So yeah, it’s about speaking to people in the community or your helpline care navigator at PSPA, you know, get some help with that.

00:17:45 Dionne

Don’t feel like you’re on your own and happen to find that.

00:17:49 Helen

Yeah, great.

00:17:50 Helen

the helpline is a great resource to tap up for signposting onto local services and support.

00:17:59 Helen

Now, I mentioned earlier before that giving up driving, it can feel like a massive loss to your independence, but it doesn’t have to be that way.

00:18:10 Helen

What would you say to anyone who might be feeling a bit like that?

00:18:17 Dionne

Absolutely, Helen.

00:18:18 Dionne

I’d say it can be really worrying to feel that for most people, that’s a big part of their independence for those of us that drive.

00:18:25 Dionne

So a huge loss, really, when you find out that you’re not able to do that anymore.

00:18:35 Dionne

I guess what I would say is that give yourself a bit of time to allow those feelings to be and then

00:18:45 Dionne

I think it’s about understanding that it may feel that you’ve lost your independence because the driving license has been taken away.

00:18:55 Dionne

However, it doesn’t stop you from getting out and about.

00:18:58 Dionne

It’s about finding the right people to support you with that.

00:19:02 Dionne

Having conversations, reaching out, reaching out to us or to people around you, to local support groups and networks and finding out what’s out there.

00:19:12 Dionne

And you might actually be surprised.

00:19:14 Dionne

And sometimes what I think it can do is open other avenues for people as well, because potentially then if you are going out and using community transport, you’re meeting other people that might be having similar struggles or you’re able to make a different network that you may not have realised before.

00:19:31 Dionne

So sometimes there can be some different benefits when life changes, I guess.

00:19:39 Helen

Yeah, I think that’s a, I think that’s a great way of looking at it.

00:19:42 Helen

And I completely agree that, community transport can open up a new network of people that you can see and speak to on a regular basis.

00:19:51 Helen

So it’s definitely worthwhile having a look at what is about for you in your area.

00:20:00 Helen

So as well as like community transport, if people are still

00:20:05 Helen

I feel comfortable getting out and about on public transport.

00:20:09 Helen

Are there any discount passes available?

00:20:13 Dionne

There are, and they are different in different areas.

00:20:17 Dionne

So I’ll go through the different areas if that’s okay.

00:20:19 Dionne

So for England, as part of the English National Concessionary Travel Scheme, it’s quite a mouthful, isn’t it?

00:20:27 Dionne

You may be eligible for a disabled bus pass.

00:20:31 Dionne

So the best thing to do is either, again, I keep saying this, but contact us, your helpline care navigators at PSPA, or you can contact your local council to find out who issues the bus passes in your area.

00:20:46 Dionne

So that’s England.

00:20:48 Dionne

Scotland, you get a free bus pass if you’re disabled and live in Scotland, and you meet the eligibility criteria.

00:20:56 Dionne

You can also in Scotland get free travel for a companion if you qualify for it, so that’s worth knowing.

00:21:03 Dionne

And again, either speak to your helpline care navigator in Scotland or you can go on the mygov.scot/disabledbuspass and you can get some more information from there.

00:21:17 Dionne

For Wales, you do get free bus travel.

00:21:22 Dionne

Again, like some of the other things, you may qualify for it.

00:21:25 Dionne

So contact your local council or ask at PSPA to find out.

00:21:32 Dionne

In UK wide, you can get a disabled person’s rail card.

00:21:36 Dionne

So that means you get one third off of rail fares for both you and a friend or a carer with a disabled person’s

00:21:46 Dionne

rail card.

00:21:46 Dionne

So that’s what you would get with that rail card.

00:21:50 Dionne

And they’re available on the Disabled Persons Rail Card website.

00:21:55 Helen

That’s really worth knowing about the discount that applies to your carer or friend or family member as well.

00:22:03 Helen

Are there any other aids available to ensure people can get about as safely as possible?

00:22:10 Dionne

Yeah, so with regards to travelling in a vehicle and then getting to and from the vehicle to the destination, it would be worth speaking to your occupational therapist, have an assessment.

00:22:22 Dionne

They can give you some advice on what extra aids would be helpful.

00:22:27 Dionne

There are various aids to get in and out of cars and to help you travel from and to your destination, such as a rollator,

00:22:38 Dionne

wheelchairs, things like swivel seats can be really helpful.

00:22:41 Dionne

I touched on it just a minute ago, can help you get in and out of the car without twisting too much.

00:22:48 Dionne

There’s also supportive car handles.

00:22:50 Dionne

They’re kind of, they’re like handles that can go on the car as you get in and out so that you can give yourself some extra support and things like

00:23:00 Dionne

a hoist to help lift someone in and out of a car.

00:23:03 Dionne

But your occupational therapist is definitely the best person to do an assessment and make sure you’ve got the right mobility aids to travel.

00:23:12 Helen

Yeah, I have seen those handles for cars being advertised and they do look really handy.

00:23:19 Helen

I think it can often, when you swivel around, you’ve got your legs out, you can lean forward and

00:23:26 Helen

use the door to put some weight on.

00:23:29 Helen

But then often it’s like, what do you use for the other side to kind of push on, push up on?

00:23:37 Helen

And they can attach to the car kind of by the side of the seat to give you another platform to kind of push your weight up on and get out.

00:23:46 Helen

So I think they look really, really useful.

00:23:50 Helen

And in terms of accessing these aids, you mentioned occupational therapist.

00:23:57 Helen

How would someone, if they’ve not already had an assessment, how would someone go about getting that assessment in place so that they could look at what aids they need?

00:24:08 Dionne

Often if someone has a neurologist or a geriatrician or a consultant, they will refer the person for occupational therapy.

00:24:17 Dionne

If you don’t see your consultant very often, you could ask the Parkinson’s nurse, if you have a Parkinson’s nurse or your GP, they could refer to occupational therapy.

00:24:29 Dionne

If you feel like you don’t know who to ask, again, I would always say pick up the phone to us because we can help you and steer you in the right direction.

00:24:38 Helen

And I’m guessing it’d be the OT as well as part of this same process that if say you need something like a walk

00:24:47 Helen

looking frame or rollator or wheelchair in order to get from the car to your destination, that’d be the ones that would be able to help with that as well.

00:24:57 Dionne

Yeah, absolutely.

00:24:58 Dionne

Any type of mobility really, occupational therapist or OT would be the person to sort of assess your mobility, see what your needs are, track to you about, you know, are you going out in the car?

00:25:11 Dionne

What sort of distances do you need to travel?

00:25:13 Dionne

And then they can advise on the best mobility aids for you to be able to

00:25:18 Dionne

to live in the way that you wish to live.

00:25:21 Helen

Great.

00:25:22 Helen

Are there any other tips that might help people plan their outings?

00:25:27 Dionne

One thing I would say, it kind of leads a little bit to what I was saying before, is often I hear from people that, or people, I hear from people that they don’t want to bother someone or they don’t think they can do something.

00:25:40 Dionne

But what I would say is just from having those conversations, you’ll probably be surprised at what you can do.

00:25:45 Dionne

So for example, people might not know

00:25:47 Dionne

about the external car handles that you just, talked in a little bit more detail about.

00:25:54 Dionne

So sometimes I think you might feel that, well, there’s nothing I can do.

00:25:58 Dionne

But once you’ve had a few conversations with the right people, you find out that, oh, there are these other aids that actually could help me get into my loved one’s car or get in and out of a car easier or walk about.

00:26:09 Dionne

So, yeah, please do talk to your healthcare professionals or us.

00:26:16 Dionne

to keep you as mobile as possible and as independent as possible.

00:26:19 Dionne

One other area I would suggest is worth looking at is our online forum, which is called Health Unlocked.

00:26:26 Dionne

So the forum has a wealth of information shared by other people who have been diagnosed with PSP or CBD or their loved ones and carers.

00:26:38 Dionne

It’s a really useful peer-to-peer

00:26:43 Dionne

format.

00:26:44 Dionne

So there’ll be lots of people on there talking about, oh, my mum has PSP, we bought her this item to help her get in and out of the car.

00:26:55 Dionne

And lots of people posting questions of a similar thing.

00:26:57 Dionne

Well, what can I do for my husband?

00:27:00 Dionne

I still want to take him out or he still wants to be able to drive.

00:27:03 Dionne

Have you got any suggestions in regards to AIDS or that kind of thing.

00:27:08 Dionne

So yeah, I’d recommend having a look at Health Unlocked for some advice from other

00:27:13 Dionne

people in similar circumstances.

00:27:16 Helen

You can also read about different people’s personal experiences in PSPA Matters, our quarterly magazine.

00:27:25 Helen

We regularly feature experience of people living with the conditions in the magazine and actually our edition in December

00:27:36 Helen

So the last edition of 2025, it did actually include some experiences of people who access support grants from us, PSPA, in order to help them with their day-to-day living.

00:27:50 Helen

And it included one couple who used the grant to help get an electric wheelchair.

00:27:57 Helen

And that sort of enabled them to spend a little longer outside, go for a walk down the coast,

00:28:05 Helen

take a look at the shop displays rather than just head straight to the cafe for a drink and then straight back to the car again.

00:28:14 Helen

So that’s also a wealth of information for the magazine.

00:28:17 Helen

So if you’re not already subscribed, please do get in touch and we can ensure you receive a copy.

00:28:24 Helen

So you mentioned that an OT might recommend different aids and equipment

00:28:29 Helen

to help them get out and about or in and out of a car.

00:28:32 Helen

Are there any funding available that could help them purchase any of the equipment that is recommended?

00:28:41 Dionne

Yes, certainly.

00:28:42 Dionne

I mean, some of it may be paid for by local authority.

00:28:46 Dionne

So it’s worth having that chat with an occupational therapist.

00:28:50 Dionne

But if it isn’t, then PSPA offer a support grant of up to 300 pounds.

00:28:56 Dionne

So that could be used for anything that makes the person’s daily life better.

00:29:02 Dionne

That would certainly be for something like a mobility aid for the car, like a swivel seat or towards a wheelchair or a rollator.

00:29:09 Dionne

So yeah, speak to us about the support grant.

00:29:14 Dionne

If you need to purchase something, one of the mobility aids, yeah.

00:29:28 Helen

The helpline is here to help.

00:29:30 Helen

If you have any questions off the back of the discussion we’ve had today, you can e-mail them at helpline at pspassociation.org.uk or you can call on 0300-011-0122.

00:29:48 Helen

Also, we would love to hear about the different ways that you’ve found have helped you

00:29:55 Helen

to get out and about.

00:29:56 Helen

So if you do have any ideas or experiences of getting mobility aids or anything that has helped you get in and out of a car or ensure you still manage to visit your friends and family, we’d love to hear from you.

00:30:10 Helen

So do post up on our social media platforms on Facebook and Instagram.

00:30:15 Helen

It’s at PSP Association on Facebook and Team PSPA on Instagram.

00:30:23 Helen

Thank you.

00:00:30 Helen

Hello and welcome to the PSPA podcast, providing informative discussions to help support everyone affected by PSP and CPD.

00:00:42 Helen

I’m Helen Chapman.

00:00:44 Helen

I’m PSPA’s Communication Manager and I’m here today to discuss the difficult topic of dealing with a diagnosis of PSP or CBD.

00:00:54 Helen

To help delve into this topic, I’m joined today by Anna Smith from Rare Minds.

00:01:01 Helen

Rare Minds are an organisation that provides specialist mental health support for the rare disease community.

00:01:08 Helen

PSPA are proud to have partnered with Rare Minds since April 2024 as part of our Mind, Body, Soul project.

00:01:18 Helen

Anna will help us to look at how receiving a diagnosis can affect us, tips for managing emotions and stress around this, and also the support that’s available.

00:01:38 Helen

Welcome, Anna.

00:01:40 Helen

Thank you for joining us today.

00:01:42 Anna

Thank you for having me.

00:01:44 Helen

So to get started in looking at this topic of gaining a diagnosis, first off, I just wanted to look a little bit at the process.

00:01:56 Helen

So like with many rare diseases, a diagnosis of PSP and CBD can follow a lengthy process of appointments.

00:02:06 Helen

investigations and in some cases, an initial diagnosis of another condition.

00:02:13 Helen

In our last survey of people living with PSP and CBD, we found that an accurate diagnosis can take up to three years.

00:02:23 Helen

From your experience, can you tell us a little bit about the impact this lengthy process can have on an individual experiencing the symptoms and also their family too?

00:02:32 Anna

Yeah, of course.

00:02:32 Anna

I think, you know,

00:02:34 Anna

having such a lengthy diagnosis process and, you know, especially getting diagnosed with other things beforehand, you know, I know it’s quite common to get a diagnosis of Parkinson’s beforehand.

00:02:45 Anna

It can lead to, you know, lots of conflicting feelings.

00:02:48 Anna

You might feel anger, sadness, grief, disbelief, frustration, and even denial sometimes, you know, when you’ve been diagnosed with one thing and then you’re diagnosed with another, it can be difficult to really settle into that diagnosis and accept

00:03:05 Anna

that that’s what’s happening for the person who’s diagnosed and for the family as well because it’s almost like the family also gets the diagnosis, they don’t escape it.

00:03:14 Anna

really impacts everyone.

00:03:16 Helen

That’s so true.

00:03:19 Helen

That’s why in recent years we’ve been really expanding some of our support to reach out to family members and carers as well as the individuals themselves.

00:03:34 Helen

Once people finally receive a diagnosis, we can hear that this throws up a mixture of emotions.

00:03:43 Helen

You know, they finally know what’s wrong, but they’ve not heard of the condition before.

00:03:47 Helen

And then, of course, they get told that there’s not a treatment or a cure available.

00:03:53 Helen

So it could be a lot to take in.

00:03:56 Helen

Could you give some insight into the thoughts and feelings that people might experience after receiving a diagnosis?

00:04:03 Helen

And do you have any tips to help guide people as they digest what they’ve been diagnosed with?

00:04:10 Anna

Yeah, I think, you know, straight after diagnosis, it’s really important to remember that and that dealing with things like this takes time and that nothing’s going to happen for you immediately.

00:04:22 Anna

That it’s something that

00:04:24 Anna

You have to allow yourself to feel all the emotions that are coming up, all the conflicting emotions.

00:04:29 Anna

You might feel angry and you might feel sad.

00:04:31 Anna

You might feel grief and loss over what you thought you had.

00:04:34 Anna

And you also might be in complete denial that, no, this is not happening to me.

00:04:38 Anna

This can’t possibly be happening.

00:04:41 Anna

And just to allow yourself to feel those things.

00:04:45 Anna

and to not, get too caught up in, I should be feeling this way and I should be feeling that way.

00:04:50 Anna

Because if anything, that’s only going to make it worse, not having the time or the patience that you need.

00:04:56 Anna

And I think it’s really important to remember to keep talking, talking to family, talking to friends, maybe you’re part of a religious community, talk to who you can and who you feel comfortable talking to.

00:05:11 Anna

You also, when you receive a diagnosis, have got a team of healthcare professionals there.

00:05:16 Anna

And I know that often in the diagnostic process, we’re sort of given a diagnosis and sent away.

00:05:22 Anna

But it’s important to remember that you are allowed to ask questions as well.

00:05:26 Anna

And you might not know even what you want to ask when you’re first given your diagnosis.

00:05:31 Anna

But what can be really helpful is if you go away and write some questions down.

00:05:35 Anna

And that’s you as the person with the diagnosis or as a family member or a friend.

00:05:40 Anna

you can then always talk to healthcare professionals afterwards.

00:05:43 Anna

You can make another appointment, you can take them to your next scheduled appointment.

00:05:47 Anna

And knowing that you, and having the confidence to take up that time to ask the questions as well, that that’s what they’re there for.

00:05:55 Anna

They’re not just there to give you information and then send you away.

00:05:59 Anna

That is really important that you say, no, these are the questions that I have and I’d like them answered.

00:06:04 Anna

And some of the answers might be, we can’t tell you, we don’t know.

00:06:07 Anna

And that’s part of the process as well.

00:06:09 Anna

And that

00:06:10 Anna

that might lead to disappointment or frustration and further denial.

00:06:14 Anna

And I think, if you’re really struggling, organisations like Rare Minds are there to support you with the diagnostic process as well.

00:06:25 Anna

You know, you can come straight after diagnosis.

00:06:27 Anna

You can come three years after diagnosis.

00:06:30 Anna

You know, it doesn’t matter to us.

00:06:32 Anna

We’re here to provide that support and talk to you about

00:06:36 Anna

the process that you’ve been through that can be quite traumatic or the thoughts and feelings you have afterwards or even, as you go along the different symptoms show themselves.

00:06:46 Helen

Yeah, I think writing down any questions is such a good idea.

00:06:52 Helen

Even if you go away and think about it, when you return to another appointment, sometimes being in that room, going through kinds of

00:07:04 Helen

chats with your consultant, you can easily forget what was on your mind without a little prompt there to help.

00:07:15 Anna

Yeah, it can be quite nerve-wracking as well, can’t it talking to a consultant or somebody who’s in charge.

00:07:20 Anna

So writing things down can be really helpful.

00:07:22 Helen

Yeah, definitely.

00:07:25 Helen

Initially, you mentioned that some people might experience a sense of denial.

00:07:33 Helen

How long do you think people would feel this sense of denial?

00:07:37 Helen

And is it common for family members to also struggle to accept a diagnosis?

00:07:42 Anna

I think how long it takes for somebody to feel the denial and work through it varies massively from person to person.

00:07:50 Anna

Some people find it harder to be in that denial because they have sort of really present symptoms when they first get their diagnosis, whereas other people hardly have any symptoms at all.

00:08:01 Anna

But it, does really vary and it probably will come and go as well.

00:08:07 Anna

one day you might feel that the diagnosis sort of hits you and then the next day you might feel, this is my life continues as it was going and I can’t possibly have PSP or CBD because nothing’s changed.

00:08:22 Anna

And I think that’s one of the most difficult things with this is that you’re told things are going to change, but things don’t necessarily change straight away.

00:08:30 Anna

So that can be really hard to accept and can really, settle you into that place of denial.

00:08:37 Anna

And it might also come and go, with the development of different symptoms as well.

00:08:42 Anna

Because we know that symptoms can come and go from day-to-day as well.

00:08:45 Anna

Maybe one day you’re more stiff, maybe one day it’s harder to speak.

00:08:49 Anna

another day’s sort of normal functioning resumes.

00:08:54 Anna

So I think the denial can come and go.

00:08:56 Anna

I don’t think it’s one set thing.

00:08:58 Anna

And like I said, it varies from person to person.

00:09:02 Anna

And, you know, in terms of family members, I think it’s it might be harder to get out of that place of denial because you don’t have the bodily cues about what’s going on.

00:09:15 Anna

you’re just sort of told this is the diagnosis and you don’t have those bodily feelings about, well, yes, I can feel that this is progressing or that I can feel that this is slightly worse today or this is slightly better today.

00:09:26 Anna

You’re reliant on somebody else communicating with you and telling you that that’s what’s happening.

00:09:32 Anna

And you also, as a family member, lack that medical support.

00:09:36 Anna

You might not be at the appointments, you might not be there at time of diagnosis, you might not get to ask the questions that you want to ask.

00:09:44 Anna

And

00:09:45 Anna

the person who has the diagnosis might not want to talk about it all the time when you want to talk about it.

00:09:51 Anna

you might have questions and the person with the diagnosis might think, actually, I don’t want to talk about it today.

00:09:57 Anna

And then that can be easier, I think, to slip into that place of denial of this is not happening.

00:10:03 Anna

And I think because PSP and CBD come with that uncertainty, don’t they, that

00:10:09 Anna

we don’t know what’s going to happen or how it’s going to happen or when it’s going to happen.

00:10:13 Anna

It can be quite easy to just push it to the back of your mind and think, okay, then this is not happening.

00:10:18 Helen

Yeah, I agree with that.

00:10:20 Helen

And certainly we do hear from people who they might experience progression in certain symptoms in kind of a flurry, but then things can plateau.

00:10:34 Helen

So

00:10:36 Helen

it can leave some questions of like, things were changing a lot and that and now and now things have sort of stabilized, like what’s going to happen next and when or did they get it wrong even?

00:10:50 Anna

Yeah, and I think, if you’ve had a misdiagnosis like Parkinson’s and then you’re told, no, it’s PSP or CBD, how can you trust that is what it really is?

00:11:01 Anna

You know, that sort of sense of, well, they could be wrong about this.

00:11:06 Helen

So we hear from people who is part of coming to terms to their diagnosis, can try and cope with themselves.

00:11:15 Helen

This could be managing caring elements for a loved one by themselves, or if they’ve got the conditions themselves, trying to hide how bad symptoms are getting and making excuses for certain behaviours.

00:11:31 Helen

What advice could you offer to someone who is experiencing this?

00:11:37 Anna

I think first it’s important to say that this is a really normal part of the process.

00:11:41 Anna

If you find yourself doing it, don’t worry.

00:11:44 Anna

Because I think it fits into that denial, doesn’t it?

00:11:47 Anna

You know, I don’t want to admit that I feel as bad as I do.

00:11:51 Anna

You know, and I think in order to function sometimes that’s where we go that I’m just going to play down my symptoms.

00:11:58 Anna

I’m not going to say how bad things are.

00:12:01 Anna

And we also don’t want other people to see us as vulnerable.

00:12:05 Anna

that’s really hard to admit that this is something that I’m struggling with, or this is something that’s not as easy as it once was, or this is something that I need your help with.

00:12:14 Anna

I think especially, you know, if we’re like, if we’re relying on, maybe it’s our children who are supporting us, that can be really difficult.

00:12:22 Anna

You know, if we’re meant to be the adult, we’re meant to be the parent, we’re meant to be the ones doing the caring.

00:12:27 Anna

And then we have to rely on our mostly adult children.

00:12:31 Anna

That can be really hard and we can be tempted to sort of play down things.

00:12:37 Anna

But I think it’s really important to remember that family need to be fully aware of your symptoms and what might possibly arise so that they can give you the best care possible.

00:12:48 Anna

And that by sort of admitting the vulnerability that you have at the present time,

00:12:54 Anna

it actually leads to further independence, which sounds a bit contradictory.

00:12:59 Anna

But if you are able to say, right, this is what I need your help with and this is what I don’t need your help with, you can get your wants and needs met.

00:13:07 Anna

Whereas if we just deny everything, it’s more difficult to then actually ask for what we need.

00:13:12 Anna

Because there might be some days where you need to hold someone’s arm when you’re walking and other days when you don’t.

00:13:18 Anna

And to be able to foster that independence to say, I need this today, I don’t need that today, can actually be quite freeing.

00:13:26 Anna

But it’s really scary to take that first step into the vulnerability of admitting how difficult things are at times.

00:13:37 Anna

And I think, there are things out there that can help you.

00:13:39 Anna

I know that PSPA provide lanyards and badges and, information that if you don’t feel like talking about it, you can give those to somebody else, you know, or if you wear the PSPA lanyard or even the, you know, the sunflower lanyards that came around sort of in COVID that people recognise quite a lot now.

00:14:04 Anna

people might recognise that you might need a bit of extra help with something, but you don’t have to explain yourself all the time.

00:14:10 Anna

Just that sort of, you know, I’m just highlighting that I’m someone who might need some help when I’m out and about.

00:14:15 Anna

But also, you know, I do have a sense of independence still.

00:14:20 Helen

And I guess that sense of being honest about your needs, what you can and can’t do, is applicable to people caring for a family member or a friend as well.

00:14:31 Anna

Yeah, definitely.

00:14:32 Anna

Because I think it can be tempting to say, yes, I’m available for everything all of the time, you know, and to completely lose yourself in caring for someone.

00:14:44 Anna

But actually, that’s not that’s not how we’re going to be most helpful.

00:14:48 Anna

Because

00:14:48 Anna

We’ve all got our own lives, maybe you’ve got your own job, maybe you’ve got your own family, maybe you’ve got small children.

00:14:55 Anna

and maybe it’s not possible all the time.

00:14:57 Anna

And maybe you need some help with the caring responsibilities.

00:15:00 Anna

So to be able to say, I can’t do that today, but here’s the plan for what we’re going to do instead, you know, rather than saying yes and burning yourself out and then not able to do anything else, you know, being able to say, actually, I’m really struggling with this part of the PSP.

00:15:17 Anna

I think it’s something that I hear a lot from partners, you know, as

00:15:23 Anna

as the sufferers sort of progress in their journey is, you know, I’ve stopped being a partner and I’ve started being a carer.

00:15:30 Anna

And then, you know, there’s a lot of work about, okay, how do we, how do we enlist professional care help and get you back to being a partner?

00:15:39 Anna

Because you, you know, that you can lose your identity in that, I think, and lose your relationship with someone.

00:15:45 Anna

And that’s really important that that relationship stays because

00:15:49 Anna

That’s how it’s always been.

00:15:49 Anna

And that’s what people deserve to be able to stay as partners or children or wider family members, friends.

00:15:57 Anna

There are carers out there who can help, but we have to admit that that’s what we need first.

00:16:02 Helen

In terms of someone caring for a loved one, do you have any advice for them?

00:16:08 Helen

Say, for example, they might struggle to state when they need help because it must be difficult caring for someone you love and

00:16:19 Helen

wanting to be able to provide for everything that they need.

00:16:23 Anna

Yeah, and I think, it’s a big responsibility to take on, isn’t it?

00:16:27 Anna

And it can sometimes feel like I’m the only one who can do this or I should be the one to do this.

00:16:33 Anna

But it’s a little bit like, you know, when you get on a plane and they make the safety announcement about put your own oxygen mask on before you help anyone else with theirs.

00:16:41 Anna

I think the same principle applies here, that you’re the caring that you’re doing for someone else.

00:16:47 Anna

cannot be necessarily what they need if you’re not also looking after yourself.

00:16:52 Anna

So I think it’s really important to identify what it is that you can do and maybe what it is that you’re willing to do.

00:17:01 Anna

So, you know, if I am capable of taking someone to the toilet, do I want to be doing that for them?

00:17:09 Anna

You know, and it’s okay to say no, it’s okay to say, actually, I don’t want that to be part of my caring responsibilities.

00:17:16 Anna

And it’s okay to ask for extra help with, anything like that.

00:17:21 Anna

Because it’s physically demanding, caring for someone else.

00:17:26 Anna

And anything that’s physically demanding is also emotionally demanding.

00:17:30 Anna

And as you know, the two really interplay with each other.

00:17:34 Anna

So I think it’s really important to remember that we can only care as well as we’re caring for ourselves.

00:17:40 Helen

Yes, definitely.

00:17:41 Helen

And I guess like this question kind of links in with this.

00:17:46 Helen

So you might have people that are in denial, but then on the other side of things, do you have people that kind of hyper focus on an element of care or symptom management, such as researching different medications or practicing certain exercises?

00:18:03 Helen

How could they ensure that any habits like this would remain healthy?

00:18:08 Anna

Yeah, so I think that’s, quite common as well.

00:18:13 Anna

that people, I think because especially with PSP and CBD, you’re told there’s nothing we can do.

00:18:19 Anna

That drive to find something to do and maybe to find a cure or to find a way to stop it or to slow it, that’s really tempting.

00:18:29 Anna

But I think it’s really important that we follow what the healthcare professionals are telling us to do in terms of medication, diet, exercise, and, to not overdo it with any of those things.

00:18:42 Anna

And it can be, really tempting to turn to Dr.

00:18:46 Anna

Google, for medication information or symptom information, because what we’re doing there is we’re trying to give ourselves a sense of certainty, you know, when we’re given such an uncertain

00:18:59 Anna

diagnosis.

00:19:00 Anna

All we want is the predictability of life back.

00:19:05 Anna

So I think it’s important to remember that actually, you can live with uncertainty because you do it all the time.

00:19:11 Anna

You just don’t know that you’re doing it all the time.

00:19:14 Anna

You have the resources to do it.

00:19:16 Anna

just feels really scary when you’re first diagnosed.

00:19:19 Anna

It feels almost impossible.

00:19:22 Anna

And I think, you know, again, turning to sort of extra support, like places like Rare Mines,

00:19:29 Anna

or the PSP helpline as well.

00:19:33 Anna

You know, they can be really helpful things to talk through, to talk through sort of what you’re feeling and how you’re managing.

00:19:41 Anna

And I guess, you know, how do we incorporate our diagnosis into our everyday life as well?

00:19:49 Anna

Because for a certain amount of time after you get your diagnosis, things are going to stay the same.

00:19:54 Anna

So how do we incorporate our medication in?

00:19:58 Anna

How do we incorporate our healthy eating, our healthy living, our symptoms into our everyday life?

00:20:04 Anna

And it might be things like you set a timer on your phone or an alarm on your phone when you take your medication and you take it at that time every day when the alarm goes off and then you don’t think about it again.

00:20:16 Anna

And your mind will wander, what about this medication?

00:20:20 Anna

What about that medication?

00:20:20 Anna

Actually, I’m not thinking about that right now.

00:20:23 Anna

I’ve got a set time to think about my medication and this is not it.

00:20:27 Anna

And it’s, I suppose, just reminding yourself that there is a time and a place to think about those things, but it doesn’t have to be every moment of every day.

00:20:36 Anna

And if you find yourself sort of ruminating and, you know, going over things over and over again and you can’t let go of things, I think then it’s time to sort of seek that extra support, talk to family, friends, community, healthcare professionals, rare minds, PSPA, you know, there’s lots of support out there.

00:20:53 Helen

There is, there is.

00:20:54 Helen

And I think it’s important to sort of highlight that because our helpline is called a helpline.

00:21:00 Helen

Sometimes people think, oh, I need specific help with something in particular.

00:21:05 Helen

I need to have a specific question to ask to have to call the helpline.

00:21:11 Helen

But actually it is there if you just need to talk through an appointment or talk through what your symptoms are.

00:21:18 Helen

Just all helps with, as you say,

00:21:21 Helen

keeping to talk about it and enhancing your understanding of your diagnosis and your condition.

00:21:28 Helen

So if someone was struggling to accept a diagnosis, whether it’s the person who is diagnosed themselves or a family member, what advice would you give to them and what support could the individual or the family access that would help them?

00:21:45 Anna

So my first advice is always to keep talking.

00:21:50 Anna

Don’t keep it in.

00:21:51 Anna

Don’t think that people don’t want to hear it.

00:21:52 Anna

Don’t think that nobody will listen because people will.

00:21:56 Anna

And I think it’s important to talk and talk and talk about how you’re feeling.

00:22:00 Anna

And, you know, there are places that you can go to do that, like Rare Minds.

00:22:05 Anna

We’ve got our individual and couples counselling services that we run through PSPA.

00:22:11 Anna

You know, I know that PSPA run

00:22:15 Anna

I’ve attended some of the groups that you run, where people can get together to talk about how they’re feeling with people in a similar place in their diagnostic journey or with their symptom management.

00:22:27 Anna

You can also talk to your healthcare professionals.

00:22:30 Anna

You know, there’s, I know that there’s, it might be difficult to talk to a consultant, but there’s often nurses that you can talk to.

00:22:36 Anna

You can also go and talk to your GP and they might be able to refer you to a counselling service in the NHS.

00:22:45 Anna

And then that won’t be specific PSP or CBD support like it is through Rare Minds, but sometimes that’s what people want as well.

00:22:53 Anna

They want to go and be able to talk without anyone having the knowledge of the rare conditions.

00:22:57 Anna

So both of those things can be really helpful.

00:23:01 Anna

And I think using other support like your family, your friends, your community, they’re really important for maintaining this sense of normality, I think, that

00:23:12 Anna

You can be a person with your family and your friends and your community.

00:23:16 Anna

You don’t just become your diagnosis because they knew you before and they knew you after.

00:23:22 Anna

And I think that knowing you before is really important.

00:23:25 Anna

You know, they’ve got the knowledge of exactly who you are.

00:23:29 Anna

They chose you to be their family or their friend or part of their community before the diagnosis.

00:23:34 Anna

They know exactly who you are as a person without PSP or CBD.

00:23:40 Anna

So I think talking to people, even if it’s about what you had for dinner last night, or maybe it’s about how you feel about what the next five years look like, different people will be able to provide you with different things, different ways of talking, and talking about different aspects of you and your diagnostic journey as well.

00:24:02 Anna

So I think using as much support as you can spread widely is really important.

00:24:10 Anna

And I know it can be difficult and I know it can feel, I don’t want to take up this time, I don’t want to take up this space, but you’re entitled to.

00:24:19 Anna

You’re just as important as you were before your diagnosis.

00:24:22 Anna

You’re entitled to talk to someone, to seek help when you need it.

00:24:25 Helen

Yeah, that’s a really good point.

00:24:27 Helen

Really good point to press there.

00:24:29 Helen

If people have been struggling after a diagnosis, what reassuring signs can they look out for that they are actually progressing and coming to terms with it?

00:24:40 Anna

I think it’s when it starts to stop feeling like a battle, and it might, living with PSP or CBD might feel like a battle every day.

00:24:49 Anna

But I suppose this battle might feel a little bit different because it might feel like a battle that you’re having with yourself.

00:24:56 Anna

You know, because even if we feel anger, we get this sense of I shouldn’t feel that and I shouldn’t feel this.

00:25:02 Anna

You know, if we feel grief and loss, I shouldn’t feel that, I shouldn’t feel this.

00:25:06 Anna

And I think

00:25:08 Anna

You know, when people are reaching that place of more acceptance, they stop having those battles with themselves.

00:25:14 Anna

It’s about, I accept that this is the way that I feel in this moment today, and that’s okay.

00:25:21 Anna

You know, that it’s all right though.

00:25:22 Anna

I just feel really sad about it today.

00:25:24 Anna

It’s all right though.

00:25:25 Anna

I just feel really angry with the world today.

00:25:27 Anna

I don’t think those feelings ever go away, but the battle that you have with yourself about having those feelings, that will lessen.

00:25:35 Anna

And I think as well,

00:25:37 Anna

You know, when, when you can sort of start to incorporate it into your everyday life that, you know, I have a diagnosis, but life does continue and it looks different how I thought it would.

00:25:50 Anna

But my life hasn’t ended at this point.

00:25:53 Anna

Because I think that’s often what happens with diagnosis.

00:25:55 Anna

We’re given a diagnosis and we feel this is the end right now.

00:25:59 Anna

And it’s not, you know, and I think people often come to that realisation that, oh, I could have 10 years of this.

00:26:07 Anna

So I’m just going to accept that every day is going to be different.

00:26:11 Anna

I’m going to feel different every day and not going to worry about what five years is going to look like.

00:26:16 Anna

I’m just going to live today as best I can.

00:26:19 Helen

And in terms of a timeline of acceptance, that of course varies massively from person to person as well.

00:26:26 Anna

Yeah, massively.

00:26:27 Anna

And I think it’s not something that comes and necessarily stays either.

00:26:33 Anna

You know, you might feel acceptance.

00:26:36 Anna

for a while.

00:26:37 Anna

And then, like you say, some people get a cluster of symptom deterioration in that it might throw you right back into denial.

00:26:44 Anna

But then you’ll get to acceptance again, and then you might go back to denial or anger or grief, and then you’ll go back to acceptance.

00:26:51 Anna

I’m not sure it’s something that can ever stay long term for any of us dealing with anything, but it’s something that will become more frequent and get easier.

00:27:01 Helen

Yeah, that’s, I guess, really the kind of messages around being kind to yourself, really, and just letting yourself move through the different feelings that you have.

00:27:15 Anna

Yeah, definitely.

00:27:16 Anna

And I think, just being aware that any feeling that you have is perfectly valid and it’s perfectly normal.

00:27:23 Anna

You might think no one’s ever felt this before.

00:27:26 Anna

But if you go along to the PSPA support groups, you’ll hear that other people have felt that before because it can feel really isolating getting a diagnosis and you can feel really lonely.

00:27:35 Anna

But actually knowing that there’s other people out there who might also be feeling deep, deep frustration with themselves and other people in the world and their diagnosis, we can sometimes feel bad about that.

00:27:47 Anna

But as soon as we find out that other people feel that way too, makes it a little bit easier.

00:27:51 Helen

Yeah, it does.

00:27:52 Helen

And as you say,

00:27:53 Helen

Our support groups are a great mechanism for connecting with other people living similar experiences.

00:28:01 Helen

Well, thank you very much, Anna, for joining us today.

00:28:04 Helen

It’s a really insightful discussion and hopefully we’ll provide families coming to terms with a PSP or CPD diagnosis, some nuggets of useful information and support to help them.

00:28:26 Helen

If any of our listeners would like to chat to someone about their diagnosis or managing care, please do get in touch with our helpline.

00:28:34 Helen

The helpline is open Monday to Friday, 9am to 9pm.

00:28:40 Helen

You can contact them on 0300 0110122 or by emailing helpline at PSP Association.

00:28:56 Helen

It’s important to remember as well that the helpline is a real gatekeeper to all of our other support services, such as the support we deliver with Rare Minds.

00:00:31 Helen

Hello and welcome to the PSPA podcast, providing informative discussions to help support everyone affected by PSP and CBD.

00:00:43 Helen

I’m Helen Chapman, PSPA’s Communication Manager.

00:00:47 Helen

Today we will be talking about how PSP and CBD can become better understood.

00:00:55 Helen

Particularly what we want to do with this podcast is to help ease any frustrations people living with the conditions as well as their families might feel whilst accessing support from healthcare professionals.

00:01:11 Helen

To help them pick this topic, we’ve gained some insight from people with lived experience via social media and support groups.

00:01:20 Helen

And Dr.

00:01:21 Helen

Vicky Marshall is joining us to give hints and tips to ensure you can navigate appointments and support, being fully informed about what to expect.

00:01:41 Helen

Welcome, Vicky, and thank you for joining us today.

00:01:46 Dr Vicky

Thanks very much, Helen.

00:01:47 Dr Vicky

It’s absolutely my pleasure.

00:01:49 Helen

So, Vicky, before we delve into the podcast topic, I was wondering, could you tell us a little bit about yourself and your role at the Queen Elizabeth University Hospital in Glasgow?

00:02:02 Dr Vicky

Of course, yeah, so I’m A neurology consultant.

00:02:06 Dr Vicky

I sub-specialise in people with movement disorders.

00:02:10 Dr Vicky

and I’ve been a consultant for about 16 years or so.

00:02:15 Dr Vicky

I set up the atypical Parkinsonism clinic approximately 4 years ago, which looks after people

00:02:25 Dr Vicky

affected by PSP and CBD, as well as patients with multiple system atrophy as well.

00:02:34 Dr Vicky

So this came on the back of identifying that people in the neurology clinics weren’t, you know, these people weren’t really getting a fair deal over time.

00:02:44 Dr Vicky

They weren’t getting the multidisciplinary team input that they really required.

00:02:49 Dr Vicky

And so for neurology patients, this has really transformed

00:02:56 Dr Vicky

their care.

00:02:57 Dr Vicky

So they’re looked after, it’s two consultants, but we have quite a big team.

00:03:03 Dr Vicky

So we have physio, speech and language therapy, neuropsychologist, we have somebody from the carer centre attending, and we have specialist nurses.

00:03:14 Dr Vicky

And we try to see the patients fairly regularly and give them

00:03:20 Dr Vicky

Quite a lot of time, around 45 minutes for each appointment.

00:03:24 Dr Vicky

That’s new and return appointment.

00:03:26 Dr Vicky

So that’s much longer than you’d normally anticipate in just a kind of regular movement disorder appointment.

00:03:33 Dr Vicky

One of the biggest things that we do is raise quite closely with the charity.

00:03:38 Dr Vicky

So we raise very closely with the PSP Association and we have close links with care navigators and the same with the MSA Trust.

00:03:49 Dr Vicky

too.

00:03:49 Dr Vicky

So I think that has made a difference.

00:03:52 Dr Vicky

So yeah, so I’m here because I’m, I suppose I’ve set up the service and I’m really quite passionate about improving the services for your

00:04:02 Dr Vicky

the people that are listening to this podcast, their families and for people affected by these conditions.

00:04:08 Dr Vicky

So I totally appreciate that there will be some people listening who don’t have that.

00:04:13 Dr Vicky

So this is really what I think is most likely to be the gold standard.

00:04:17 Helen

So just thinking if anyone listening hasn’t sort of been offered a full range of support off the back of

00:04:27 Helen

meeting with their neurology consultant, what would you suggest they ask either the consultant or the GP in order to try and gain access to the different services that you can get within multidisciplinary support?

00:04:43 Dr Vicky

I suppose probably, open up a conversation with the consultant or the specialist nurse or whoever is, that person is seeing might be quite helpful.

00:04:55 Dr Vicky

So just to say, look, I appreciate that there might be other therapists open to me for my condition.

00:05:01 Dr Vicky

I have heard that speech and language therapists might be of benefit.

00:05:05 Dr Vicky

Can I be referred to one?

00:05:07 Dr Vicky

But I suppose it’s

00:05:09 Dr Vicky

It’s about knowing a little bit more about your condition as well.

00:05:11 Dr Vicky

You know, why is it that I might need a speech and language therapist?

00:05:16 Dr Vicky

And that’s because, well, they can help you formulate speech.

00:05:19 Dr Vicky

They can identify that there is a progression and unlikely trajectory, and they might wish to discuss things like voice banking, that’s, you know, recording your voice.

00:05:32 Dr Vicky

for the future because we do know that unfortunately invoice will change over time.

00:05:37 Dr Vicky

So it’s really important to do that now, right at the very start and not wait years in order to do that.

00:05:46 Dr Vicky

So it’s really, yeah, I suppose you have to be a little bit forceful sometimes, you know, if you’re within a team where you feel like they don’t really understand it, then you actually have to take a role in

00:05:58 Dr Vicky

showing them the information and hopefully getting them to understand that.

00:06:05 Dr Vicky

It may just be that they’re not used to looking after a person with this condition and they’re not familiar with things like voice banking or how early it’s supposed to be done.

00:06:14 Helen

I don’t think people are.

00:06:16 Helen

I think someone said recently in a support group meeting that I attended was you don’t know what you don’t know.

00:06:23 Helen

So I think this, like with this podcast, that’s some of the questions we want to kind of try and help with is that people don’t necessarily know what support is out there.

00:06:37 Helen

And

00:06:39 Helen

Sometimes it feels, I guess, like you can’t prepare ahead if you don’t know what you might be needing in the future.

00:06:47 Helen

Like you said, with this speech and language therapy, thinking about it from an early stage, it might not be an issue now.

00:06:55 Helen

So you might think, I can just put that on the back burner, but there’s things like voice banking and I know there’s kind of exercises that people can do to try and strengthen their muscles for swallowing.

00:07:09 Helen

speech that they can be doing from an early stage to try and maintain as much as they can for as long as possible.

00:07:17 Dr Vicky

That’s exactly right.

00:07:18 Dr Vicky

Yes.

00:07:19 Dr Vicky

And thinking along the same lines, ways in which to manage pulling of saliva, which is a common problem and the really simple things that can be done at an early stage that don’t require medications, you know, that can be helped with.

00:07:40 Dr Vicky

Yeah, I was just recently speaking with someone who felt that because they recognised that there were going to be problems in the future, but nobody could tell them exactly what the trajectory was going to be.

00:07:54 Dr Vicky

I think we’re all as staff quite fearful of telling people exactly, you know, what changes are to be expected.

00:08:01 Dr Vicky

But people want to know.

00:08:03 Dr Vicky

I recognise that people want to know.

00:08:06 Dr Vicky

And so, you know, particularly it can be upsetting.

00:08:09 Dr Vicky

But planning for the future is incredibly important.

00:08:13 Dr Vicky

And if you’ve got all that information, then you’re forearmed.

00:08:18 Dr Vicky

And that’s exactly what we’re talking about.

00:08:19 Dr Vicky

It’s about having all the information, knowing what’s going to change, and then be forearmed in terms of getting access to

00:08:28 Dr Vicky

people that you really should be given access to.

00:08:30 Dr Vicky

I think the PSP Association is really, really good at doing this for patients and your care navigators and helpline will definitely, you know, the people who are manning it are definitely able to communicate all of these issues.

00:08:45 Dr Vicky

I think that’s a great support for many people.

00:08:48 Helen

Yeah, and I think sometimes people think that because it’s called a helpline, if they don’t specifically need help with a problem that it not to call us, but actually we’re here for any kind of thoughts, feelings, questions, conversations.

00:09:09 Helen

If you just need to talk through

00:09:12 Helen

an appointment or what you’re experiencing and you just want someone to listen, we can be there.

00:09:19 Helen

We can also signpost.

00:09:21 Helen

We’ve got a lot of resources on our website.

00:09:24 Helen

In particular, I was thinking as you were mentioning some of the questions that people could ask their consultant or their GP,

00:09:33 Helen

in terms of gaining access, we do have a leaflet called what to expect from your care.

00:09:38 Helen

And if someone wants something to reference, we have one leaflet that’s for people with PSP and another one for people living with CBD.

00:09:48 Helen

And it follows a similar line, but it does give you kind of an idea of some of the questions you could be thinking about and what you could ask to different healthcare professionals.

00:09:59 Helen

So our helpline can kind of

00:10:02 Helen

direct you into the right direction for any resources that might be helpful as well.

00:10:08 Helen

So working in a clinic for people with PSP and CBD, obviously, yes, we’ve just been talking about you’ve got

00:10:18 Helen

a lot of insight into the provision of support for patient-centred service.

00:10:24 Helen

And that’s exactly what you’ve been saying about a multidisciplinary team.

00:10:29 Helen

I think these are some of the frustrations that people we’ve been speaking to have experienced in terms of what to expect.

00:10:38 Helen

and how to shape appointments and services to their needs.

00:10:44 Helen

For example, Sonia, whose mum sadly died of PSP earlier this year, her family were quite frustrated because during appointments, people tended to address Sonia or other members of the family rather than the mum who had PSP.

00:11:04 Helen

So I was wondering how

00:11:06 Helen

Could other families who’ve perhaps had similar experiences where questions or conversations within an appointment are being directed mainly to family members?

00:11:19 Helen

How would you recommend that you could help shape it to keep the person with PSP or CVD at the centre of discussion, even if speech is weakening or lost?

00:11:31 Dr Vicky

Yeah, OK, so.

00:11:34 Dr Vicky

Unfortunately, I think it is a common problem.

00:11:39 Dr Vicky

And I suppose it’s about knowledge and the person that’s looking after your, you know, you or the person with PSP or CPD, recognising that there are numerous different problems that lead to the issue with speech.

00:12:02 Dr Vicky

And this includes, you know, slurring of speech and also language difficulties.

00:12:10 Dr Vicky

And also the fact that people with the condition, their facial expression changes and the people who are looking after them then may think that they’re not so interested because their facial expression has changed and looks a bit blank or the gaze is affected.

00:12:27 Dr Vicky

So

00:12:28 Dr Vicky

There’s that.

00:12:29 Dr Vicky

There’s also, with these conditions, there can be a slowing of thought.

00:12:34 Dr Vicky

So it can take a very, very long time in some patients for the thought to kind of reach the lips, if you like, and then for the actual speech production.

00:12:44 Dr Vicky

So there’s many different aspects at play here.

00:12:48 Dr Vicky

And what I think is probably the best thing to do is for that person to take in somebody who knows them very well.

00:12:57 Dr Vicky

the family and for the family, if they feel able to, say immediately, even at the door before they sit down, look, my…

00:13:07 Dr Vicky

whoever it is, wants to be part of the conversation, understands exactly what you’re saying, please address your questions to her or him.

00:13:19 Dr Vicky

We might fill in or answer and, you know, when it’s appropriate, but she or he can communicate or this is the best way in which to communicate.

00:13:31 Dr Vicky

Or even if they can’t communicate, it’s still important that the questions are still addressed to them.

00:13:37 Dr Vicky

It’s about like totally taking charge of the consultation, walking in saying this is the way it is and you, you know, our family member is here and wants to be part.

00:13:51 Dr Vicky

And the other thing that I would suggest is that if it’s about slowing of speech and if that person can speak but it takes a very long time, is to request in advance a longer appointment.

00:14:09 Dr Vicky

And, because you have the right to be heard and it’s okay to remind the doctor or whoever it is that is listening that they should take more time.

00:14:21 Dr Vicky

Now, they’re not going to be able to take more time unless they’ve been told in advance to do that because clinics are just, you know, stupidly busy.

00:14:29 Dr Vicky

But there might be some leeway with that.

00:14:31 Dr Vicky

Or in fact, if the

00:14:36 Dr Vicky

person with the condition or if the family or carer wants to actually e-mail questions or kind of top issues in advance of the appointment.

00:14:49 Dr Vicky

That’s another really, really good way of just directing everyone’s thoughts when, you know, when the appointment comes around.

00:14:59 Dr Vicky

It might mean that the conversation can actually be a little bit shorter as well and can be much more directed and kind of going at a pace that’s much more appropriate to being able to hear exactly what the person with the condition wants or what issues there particularly are.

00:15:21 Dr Vicky

Also, it might, I’ve always found it useful asking up front, if somebody is using a communication device, how they would like to use it, whether, some people when their voices are very poor, might use a yes, no.

00:15:40 Dr Vicky

device, thumbs up, thumbs down, and to find out, I ask and find out a little bit about how accurate those are, because we know that sometimes maybe a little bit inaccurate as time goes on.

00:15:51 Dr Vicky

And so it’s just to kind of lay it all out and to make it make sure everyone knows that it’s okay to lay it out as soon as you go in the room, basically.

00:15:58 Dr Vicky

But preferably, I’d try and make sure that there’s

00:16:03 Dr Vicky

Is it better to send an e-mail in advance and just ask for a longer appointment or to lay out the top priorities there?

00:16:12 Helen

I think that’s such a good tip, asking for a longer appointment or sending some questions through beforehand.

00:16:20 Helen

You often get your appointment letter either by text, e-mail or in the post.

00:16:27 Helen

you do just note the date and the time and don’t really think any further until you get there.

00:16:33 Helen

But I think thinking ahead and thinking about things like that, about whether more time is needed is great advice.

00:16:40 Helen

So thank you.

00:16:42 Helen

Got a bit of a similar question from Lorna, not in a medical setting, but she is living with PSP herself.

00:16:52 Helen

And

00:16:53 Helen

when she might bump into neighbors or see friends, because her speech is becoming a bit quieter now and it can take her a bit longer for her to.

00:17:02 Helen

kind of process her words.

00:17:05 Helen

She does sometimes find that people think she’s already finished what she’s said and might try and finish the conversation and walk away.

00:17:17 Helen

How do you ensure that she sort of gets enough time, whether it’s in appointments or with family and friends, to have the time and space to

00:17:27 Helen

say what she needs to say.

00:17:29 Dr Vicky

So for Lorna, I wonder if providing people that she’s likely to see and meet regularly with information on PSP, so one of the booklets that are leaflets that is available for PSP or CBD from the association.

00:17:52 Dr Vicky

So that might be helpful so that other people know exactly what the issues are and what the problems she might have with her speech is.

00:18:01 Dr Vicky

But the other thing that might be helpful is if simply she has something to hand over to them just at the start of a conversation, something brief.

00:18:13 Dr Vicky

It could be, a laminated message to say, my speech is very slow.

00:18:19 Dr Vicky

I really want to speak to you.

00:18:21 Dr Vicky

Can you be patient?

00:18:22 Dr Vicky

You know, give me some time.

00:18:24 Dr Vicky

Something as simple as that.

00:18:26 Dr Vicky

And that would, you know, I think allow that kind of time and space for her to be able to be

00:18:34 Dr Vicky

heard and understood and probably take the pressure off her as well.

00:18:38 Dr Vicky

If she’s trying to speak quickly and trying to get everything said within two, within two minutes, then that’s really quite frustrating as well.

00:18:47 Dr Vicky

It can be really quite upsetting.

00:18:49 Dr Vicky

So again, it’s about, again, educating the people that you’re coming up to.

00:18:56 Dr Vicky

And I think that’s probably one of the best ways to do it.

00:18:59 Dr Vicky

Or if you’re with a family member or friend, then to actually tell them to say to this other person, this is the situation.

00:19:09 Dr Vicky

So it can be difficult to be upfront like that.

00:19:12 Dr Vicky

That’s the only problem.

00:19:14 Helen

Yeah, I think PSPA does have these emergency medical cards, which does give a really short summary of some of the symptoms that you might experience if you’ve got PSP or CBD.

00:19:29 Helen

And it does mention some slowness of speech.

00:19:32 Helen

So there’s always those for an option.

00:19:35 Helen

But

00:19:36 Helen

kind of what you suggested, maybe something a bit more personalised, could perhaps have a note in their pocket or something that is a bit more personalised.

00:19:46 Dr Vicky

It’s very personal to that person, isn’t it?

00:19:48 Helen

Yeah.

00:19:49 Helen

So another question we had was, Chris’s mother-in-law has developed a form of dementia alongside her PSP, which was

00:20:02 Helen

diagnosed previously, he found that it took 12 months for him and his wife’s concerns to be investigated as they sort of felt that all of the symptoms being experienced were being kind of lumped into the PSP diagnosis.

00:20:22 Helen

So if someone feels like there might be something else going alongside

00:20:28 Helen

their PSP and CBD diagnosis or you might need clarity that if the symptoms are part of the condition or not, what recommendations would you give to family members like Chris?

00:20:44 Dr Vicky

Right, okay, so this is a difficult one actually.

00:20:47 Dr Vicky

I think it happens with most chronic conditions where one of the jobs that we have is to

00:20:55 Dr Vicky

not presume absolutely everything is due to that condition.

00:21:00 Dr Vicky

And so you do it better when you’re familiar with that particular condition.

00:21:07 Dr Vicky

And I suppose it’s about educating again, it’s about educating potentially your GP.

00:21:12 Dr Vicky

Now, GPs have to know so much about everything and these are rare conditions.

00:21:17 Dr Vicky

So you ultimately, you know, don’t, they won’t understand the condition and that’s okay.

00:21:23 Dr Vicky

All right.

00:21:24 Dr Vicky

But

00:21:25 Dr Vicky

you can educate by, in fact, again, that the PSP Association booklets for professionals are really, really good on that.

00:21:34 Dr Vicky

But, you know, they might not read it, I suppose.

00:21:38 Dr Vicky

And I think you just have to

00:21:42 Dr Vicky

You could speak to a care navigator and you could speak to your consultant or your nurse or anybody.

00:21:47 Dr Vicky

Speak to as many people as you can about whether this is definitely related to the condition or not or what you know.

00:21:57 Dr Vicky

And if there’s some uncertainty, then you just have to kind of press and push to, you know, for that to be kind of further assessed or investigated.

00:22:10 Dr Vicky

So

00:22:12 Dr Vicky

It sounds like for Chris, it was his mum, was it?

00:22:18 Dr Vicky

Mother-in-law.

00:22:19 Dr Vicky

Mother-in-law.

00:22:19 Dr Vicky

So there’s both the diagnosis of PSP and dementia.

00:22:25 Dr Vicky

And well, actually, we do know that you can get cognitive impairment, so an impairment of brain functioning in PSP.

00:22:34 Dr Vicky

So you get a type of dementia in PSP.

00:22:37 Dr Vicky

But it sounds like here there was both PSP and

00:22:40 Dr Vicky

a different type of dementia.

00:22:42 Dr Vicky

So that would be quite unusual.

00:22:45 Dr Vicky

It might be very difficult then for actually anybody to untangle that.

00:22:52 Dr Vicky

But I suppose the most important thing is actually identifying that there is cognitive impairment there.

00:22:59 Dr Vicky

And then recognizing that, allowing whoever else is involved in care, including

00:23:08 Dr Vicky

if they’re in a care home, for example, recognising that there are issues with cognition, that it’s not just a physical problem and helping support, helping with strategies in relation to that as well.

00:23:22 Dr Vicky

So it’s a very important thing to recognise.

00:23:26 Dr Vicky

It’s very difficult when there are numerous different types of conditions going on, but you know, these conditions are more common as we age.

00:23:36 Dr Vicky

And as we age, we get multiple conditions.

00:23:39 Dr Vicky

So we do have to be aware of that.

00:23:45 Dr Vicky

Healthy degree of concern, I think, is reasonable, but always just keeping the conversation open with the care.

00:23:54 Dr Vicky

I think once the diagnosis is made-up, you know, it often takes far too long for these diagnoses to be made.

00:24:02 Dr Vicky

But once it is made, you are often looked after by people who know lots about the condition.

00:24:10 Dr Vicky

So I don’t think, I don’t think we have to worry that too much has been missed generally.

00:24:16 Dr Vicky

But if you did feel that something wasn’t right, then you have the ability, it’s your right to ask for a second opinion within the NHS.

00:24:26 Dr Vicky

So that’s something to, you know, just to have a, to be aware of.

00:24:30 Helen

Yeah, and consider.

00:24:32 Dr Vicky

Yeah.

00:24:33 Helen

The next question has come in actually from multiple avenues because it’s a few people have mentioned this.

00:24:41 Helen

So following a diagnosis, you might get an appointment to see your neurology consultant around every six months for a checkup.

00:24:53 Helen

What happens if people have questions or things change in between appointments?

00:25:00 Helen

Who could people turn to?

00:25:03 Dr Vicky

I would hope that people might have a specialist nurse available.

00:25:10 Dr Vicky

I know that doesn’t always happen.

00:25:13 Dr Vicky

There’s gaps in service.

00:25:14 Dr Vicky

We’ve just had a large, rather large gap in our service, so we didn’t have a specialist nurse available.

00:25:20 Dr Vicky

Or there are clinic coordinators who may be a physiotherapist or an OT or something like that.

00:25:26 Dr Vicky

There’s often other people other than the consultant available.

00:25:31 Dr Vicky

And so what I would suggest is that you would contact one of those people and ask for an appointment.

00:25:40 Dr Vicky

Or if that’s not available, then to ask for an early appointment with the consultant.

00:25:48 Dr Vicky

Now,

00:25:50 Dr Vicky

Six monthly might be okay for some people, particularly if the condition is reasonably stable.

00:25:57 Dr Vicky

But I think probably with these types of conditions, a three to six monthly appointment might be okay.

00:26:04 Dr Vicky

That might be seen a consultant at one point and then a nurse consultant or, you know, there’s various different models.

00:26:13 Dr Vicky

So I think it is.

00:26:14 Dr Vicky

If somebody has got more problems or if they’re changing quickly, then it’s going to be much more important to see them much more quickly.

00:26:22 Dr Vicky

And I think if there are big issues which are impairing function, then it’s right not to wait for five months, you know, to see the consultant or whoever it is in five months time.

00:26:38 Dr Vicky

I think you just have to be a bit pushy and ask for an early appointment and

00:26:44 Dr Vicky

Yes, the system is under strain, but ultimately it’s you and your loved one.

00:26:49 Dr Vicky

You just have to try and get around it.

00:26:53 Dr Vicky

And we will know that you’re having problems if you don’t let us know as well.

00:26:58 Dr Vicky

Sometimes we can actually try and give regular appointments, but something goes wrong with admin and the appointment is lost or given slightly later.

00:27:08 Dr Vicky

We might not recognise that because we don’t have oversight of that.

00:27:11 Dr Vicky

So we do need

00:27:13 Dr Vicky

That’s why a clinic coordinator would be a really good role, I think.

00:27:16 Dr Vicky

Not everyone has one, but we do need you to get in touch with us if there’s any problems.

00:27:22 Helen

That’s great advice.

00:27:24 Helen

Don’t wait for your appointment, ring and see if you can speak to someone sooner.

00:27:30 Dr Vicky

Yeah.

00:27:31 Helen

So we’re on the last question now.

00:27:34 Helen

Again, it focuses on awareness of symptoms.

00:27:38 Helen

So we have a couple who experience

00:27:42 Helen

of a parent who was diagnosed with PSP.

00:27:46 Helen

After receiving the diagnosis, the GP was still trying to investigate the backward falls, which are part of the PSP condition.

00:27:56 Helen

In such a situation, how would you recommend symptom management isn’t held up by further investigations that in this case weren’t needed?

00:28:09 Dr Vicky

That’s a tricky one, actually, because

00:28:12 Dr Vicky

It’s all about knowledge.

00:28:16 Dr Vicky

And if the GP doesn’t have the knowledge and there’s no one there to tell the GP, then it’s very, very tricky.

00:28:23 Dr Vicky

But backwards falls are a cardinal feature of, say, PSP.

00:28:28 Dr Vicky

So if you’re being looked after or if you ask that question from many people who knew about PSP, they would know not to potentially investigate that.

00:28:40 Dr Vicky

So

00:28:43 Dr Vicky

so much of the other questions, it’s about gaining knowledge yourself if possible.

00:28:48 Dr Vicky

A physiotherapist could have answered the question about the backwards falls as well.

00:28:55 Dr Vicky

And maybe for everyone, we should actually be sending out the information booklet, you know, sending those out to the healthcare professionals and asking them to be familiar with it.

00:29:07 Dr Vicky

without the knowledge, I don’t really know what you can do.

00:29:10 Helen

Yes, we do have a specific booklet that is aimed at GPs.

00:29:16 Helen

And we also have some animations that talk about the key symptoms of the condition.

00:29:25 Helen

So I guess they are tools that people could utilize at appointments if they felt there was

00:29:33 Helen

a bit of an knowledge gap between what the symptoms are and conditions.

00:29:40 Dr Vicky

Yeah, I think what we do, part of our role is trying to figure out what is related to the condition or not.

00:29:48 Dr Vicky

And we’re doing that constantly in clinics.

00:29:54 Dr Vicky

So, as we know the most, then it’s probably just as easy to let us know what’s happening and find out whether we think it could be related or not.

00:30:04 Dr Vicky

That’s probably the best advice because we can very quickly say, well, of course it’s related or I’m not sure if it’s related.

00:30:12 Dr Vicky

Maybe it does need to be investigated or it’s completely unrelated, you know.

00:30:17 Dr Vicky

So, and we find that often quite easy to do.

00:30:22 Dr Vicky

So you’re having a good communication channel with your team is probably best.

00:30:29 Dr Vicky

So I think most I think most consultants and nurses are happy to communicate or be communicated to via e-mail, for example, might be to the my patients and families might communicate to my secretary and she forwards it on the e-mail and then I can, you know, do whatever I need to with that.

00:30:50 Dr Vicky

So

00:30:52 Dr Vicky

I think, if I was in that position, that’s probably what I’d do just to double check, big issues like that.

00:31:03 Dr Vicky

Because it is a waste of time.

00:31:04 Dr Vicky

You’re absolutely right.

00:31:05 Dr Vicky

You don’t want it to hold up all of the treatment and therapy.

00:31:10 Helen

Yeah.

00:31:11 Helen

And I guess going back to a previous answer that if you feel that.

00:31:18 Helen

the condition needs more explanation, you could always ask your neurology consultant to write something that you could pass on.

00:31:27 Dr Vicky

Yeah, exactly.

00:31:28 Dr Vicky

I was just going to mention that in, I don’t know what it’s like in England, but actually in Scotland.

00:31:34 Dr Vicky

patients are looked after by neurologists or medicine for the elderly consultants as well.

00:31:39 Dr Vicky

So actually there’ll be many, many people who are looked after very, very well by medicine for the elderly consultants who have also the day hospitals and DME, so MDT set up to.

00:31:52 Dr Vicky

So just to kind of, just to make sure that people don’t think they have to be looked after by a neurologist.

00:31:59 Dr Vicky

And I don’t know if that’s peculiar to

00:32:02 Dr Vicky

Scotland or not?

00:32:03 Helen

No, it’s always good.

00:32:07 Helen

People might be looked after by a different consultant, if that is true.

00:32:11 Helen

Yeah.

00:32:12 Helen

Well, thank you very much for joining us today.

00:32:16 Helen

It’s been a really useful discussion and hopefully it’s given some of our listeners some takeaway advice they could apply to their appointments or care.

00:32:36 Helen

If you’d like to access any of the PSPA resources that we’ve mentioned, you can visit our website, which is pspassociation.org.uk, or you can contact our helpline on 0300

00:32:53 Helen

010122.

00:32:56 Helen

Also, you might like to find out more about our Understood Research Appeal, which is aiming to raise awareness and funds for life-changing research to help us better understand PSP and CBD.

00:33:12 Helen

You can also find this on our website.

00:33:16 Helen

If you look into the research section, you’ll see Understood Research Appeal.

00:33:22 Helen

Thank you.

00:33:23 Dr Vicky

Thank you very much.

00:00:31 Helen

Hello and welcome to the PSPA podcast, providing informative discussions to help support everyone affected by PSP and CVD.

00:00:44 Helen

I’m Helen Chapman, PSPA’s Communication Manager, and today we will be talking about the benefits of movement and what that can look like for you.

00:00:55 Helen

To help discuss this topic, I am joined by Laura from Neuro Heroes.

00:01:01 Helen

Laura will help to give an insight into the different ways you can keep moving

00:01:06 Helen

how physiotherapy can help, and the online classes you can take part in with PSPA and Neuro Heroes.

00:01:23 Helen

So to get on with the episode, welcome.

00:01:26 Helen

Welcome, Laura.

00:01:28 Laura

Hi, Helen.

00:01:30 Laura

Thanks for having me on.

00:01:32 Helen

So before we get stuck into the discussion about the benefits of movement, could you tell us a little bit about yourself and what neuro heroes do, please?

00:01:45 Laura

Sure.

00:01:46 Laura

So my name’s Laura.

00:01:47 Laura

I’m a neurophysiotherapist based in London, and I work solely with people living with neurological conditions.

00:01:55 Laura

So like PSP and CBD, but also multiple sclerosis, Parkinson’s, and things like brain injury.

00:02:03 Laura

And about four and a half years ago, me and my business partner set up Neuro Heroes, and that is an online neuro gym.

00:02:12 Laura

And we’re a team of neurophysios who support people all around the UK to get active by doing live online exercise classes.

00:02:22 Laura

And these are on Zoom in small groups.

00:02:24 Laura

And a big part of what we do is helping people stay engaged in exercise week to week, keeping things varied and interesting, and most importantly, keeping activity and exercise enjoyable.

00:02:39 Helen

Oh, fab.

00:02:41 Helen

We’ve had some really great feedback about the classes, but we’ll get onto that a little bit later.

00:02:48 Helen

So today we’re here to talk about the benefits of movement.

00:02:52 Helen

Often movement can be thought of as bigger activities like doing an exercise class, going for a walk or taking a bike ride.

00:03:03 Helen

That can seem a little bit unachievable when living with PSP and CBD.

00:03:08 Helen

So Laura, how would you encourage people living with the conditions to move and why?

00:03:16 Laura

So I totally understand your point there because movement and exercise can feel quite overwhelming and intimidating, I think, for a lot of people.

00:03:26 Laura

But often I talk to my clients about how activity may look different to how it has in the past, but how it’s still a really powerful tool.

00:03:36 Laura

And there’s really tangible effects that everybody can get from it.

00:03:41 Laura

So you can get benefits even from really small bits of movement.

00:03:45 Laura

And that could be something like moving your arms in the chair, or working on your posture, or practising standing up.

00:03:53 Laura

And what we know is that these small bits of movement have lots of impact.

00:03:59 Laura

Exercise and movement can help manage particular symptoms, so stiffness,

00:04:05 Laura

or weakness we can improve on by adding in particularly targeted exercises.

00:04:11 Laura

And because of that, in turn, exercise can help your physical and mental health.

00:04:16 Laura

And a lot of people find that movement can really boost quality of life overall.

00:04:20 Laura

We can talk about that a bit later.

00:04:23 Laura

So what do they actually do?

00:04:24 Laura

So small movements can help people maintain function and delay a decline in strength or abilities.

00:04:34 Laura

They can also help reduce the risk of falls and injuries.

00:04:38 Laura

And that’s a really important one because we want people to stay healthy and strong for as long as possible.

00:04:45 Laura

I suppose the question is practically in day-to-day life, what does that look like?

00:04:50 Laura

And the message is that a little can go a long way.

00:04:53 Laura

So we like to talk about exercise, snacking sometimes.

00:04:56 Laura

And this can be having a few ideas for small movements people can do by themselves.

00:05:02 Laura

I mentioned swinging the arms in the chair, but it could be holding a bottle of water or a tin of beans, pushing that out in front of you or up above you for maybe 20 or 30 seconds or a minute once you get used to it.

00:05:17 Laura

Or things like kicking one leg out in front of you in the chair just to wake up the muscles and do some movement that gets you going.

00:05:26 Laura

And ideally, you want to move daily, even if it’s small things, those chair exercises, or maybe doing a little bit more standing than you would usually.

00:05:35 Laura

Integrating those sorts of exercises into your day, a bit more activity than usual.

00:05:41 Laura

Sometimes attaching it to a time of day is useful.

00:05:44 Laura

So stretching before a meal or standing in an advert break of the TV time can be a useful way of building those things into your day so you remember to do them.

00:05:55 Helen

Oh, fabulous.

00:05:56 Helen

I really love that term, exercise snacking.

00:06:00 Helen

It’s perfect for the small ways people can introduce movements into their days.

00:06:06 Helen

I know at one of our family and friends today, an OT spoke about how catching a tissue or a cloth out in front of them kind of gives that kind of

00:06:21 Helen

stretch and grab kind of action, which is kind of one that you could do several times a day, sat in the armchair watching some TV.

00:06:31 Laura

Absolutely.

00:06:32 Laura

And these things don’t need to have big bits of equipment.

00:06:35 Laura

You don’t need to have set aside lots of time or space.

00:06:40 Laura

There are so many things you can do just in your usual space where you spend time.

00:06:45 Laura

that can help you practice movements that are useful.

00:06:49 Laura

And I like that exercise snacking analogy because it really goes to show that you don’t need to do 20 or 30 or 40 minutes exercise.

00:06:58 Laura

You could do two different movements for 30 seconds.

00:07:02 Laura

have a rest and then you might do that a few times later in the day, but it really is about snacking rather than having that bigger meal of exercise.

00:07:10 Laura

The snacking can be just as useful and I think it feels a lot more achievable for people who haven’t maybe done much activity for a while or are starting out in new type of movement.

00:07:22 Helen

Yeah, definitely.

00:07:23 Helen

I think that is a good way to start and you can always build it up if you feel you want to stretch things a little further.

00:07:32 Laura

Certainly.

00:07:33 Helen

So after diagnosis, people living with PSP and CBD will be offered a range of different support services.

00:07:42 Helen

As part of that, they might be referred onto a physiotherapy service to help manage some of their symptoms.

00:07:50 Helen

Could you tell us a little bit more about what might be discussed or reviewed during physio appointments?

00:07:57 Laura

Yeah, so it depends where you live and what the services around you

00:08:03 Laura

are like as to what that will look like.

00:08:05 Laura

So some people might be referred into a hospital setting, you go for an outpatient appointment.

00:08:11 Laura

Some people might be seen by a community therapist that come to them at home.

00:08:16 Laura

So that of course changes the type of session you might have with a physio.

00:08:21 Laura

But people will likely be referred either for one particular reason, like maybe benefiting from a walking aid, so they’re being assessed for that.

00:08:31 Laura

or for a general overview.

00:08:33 Laura

And as a physio, a big part of my job is getting to be a detective.

00:08:39 Laura

So my job is to look at how people move and try and work out why some things maybe look different than they used to or feel different.

00:08:49 Laura

And then working out from that a plan to help manage that or improve on that.

00:08:55 Laura

So we might look at lots of specific things within a physio assessment.

00:08:59 Laura

It could be things like stiffness or spasms in a particular area, maybe the trunk or the legs.

00:09:08 Laura

It might be that we look at balance in the chair, so moving around, sitting on the edge of a bed or in the chair, or balance in standing.

00:09:17 Laura

And if I were to assess someone’s balance, what I’m really looking for is what’s lacking and how might I be able to reduce their risk of falls?

00:09:26 Laura

Or if somebody moves quite slowly, how can I integrate bigger, faster movements into their routine that we then try and sort of carry over into their normal day-to-day life?

00:09:39 Laura

So lots of it is about looking at the way someone moves and seeing if there’s things we can

00:09:45 Laura

we can add in to improve on the way they’re moving or to reduce risk or make life a bit easier.

00:09:53 Laura

And I think what’s important to know is if you have been referred to physio, physio can be what you want and need it to be.

00:10:01 Laura

It’s useful to go with your main challenges written down even so that the physio can review those things with you, whether that’s getting in and out of bed or getting on and off a chair,

00:10:13 Laura

Or knowing that turning around is really difficult and that’s a particularly kind of risky time for you in your day.

00:10:20 Laura

Or if you might find something hard, thinking about whether there are any bits of equipment or strategies or exercises that might help those particular targeted areas.

00:10:32 Laura

So it might be that the physio gives some things to practice and repetition to improve on something.

00:10:39 Laura

or different ways around a challenging task.

00:10:42 Laura

I quite often give people a few bullet points to help them do a particular thing.

00:10:47 Laura

So sitting out, standing up, sorry, from a chair is an interesting example because there’s a few things you can do that make that a lot easier.

00:10:56 Laura

So I might be writing down a few little strategies for people and then getting them to practice that as well so that they can build those things into their routine, maybe get a bit more active.

00:11:06 Laura

But what physio can be really good at is targeting the areas that you’re having difficulty with.

00:11:11 Laura

So definitely think about that in advance if you have been referred to physio.

00:11:16 Helen

Yeah, that’s a really good tip.

00:11:18 Helen

Putting you on the spot a little bit, and obviously within the parameters of knowing that everyone’s a little bit different with their symptoms and severity, but we know that commonly people with PSP and CBD will experience balance problems, falls, and maybe some fine motor movements like grasping a cup to have a drink of a cup of tea.

00:11:46 Helen

Is there anything that you would suggest movements to help maintain those as much as possible?

00:11:54 Laura

Yes, and I think the important thing you said is that it really depends on what that person is like right now, because everybody has different abilities.

00:12:03 Laura

And my main concern as a physio is

00:12:07 Laura

is the person’s safety.

00:12:08 Laura

So it’s really important to do the things at the right level for you right now.

00:12:14 Laura

But things like balance, we know that we commonly see in PSP, people tend to fall backwards or step backwards and not have the ability to sort of bring themselves forwards again and often lose their balance that way.

00:12:28 Laura

So in our neuro heroes classes, I quite often work on people moving forwards.

00:12:35 Laura

not just in standing, but even just getting used to that in the chair.

00:12:38 Laura

So as long as you’ve got your two feet firmly on the floor and you feel safe, just having the hands on the arms of the chair and leaning forwards, bringing your nose forwards over your toes is a great way of reminding your brain that coming forwards is safe and not always being backwards.

00:12:55 Laura

So people can get into habits that we then have to try and help them unpick a bit, I suppose.

00:13:02 Laura

So leaning forwards in the chair and remembering to bring your weight forwards onto your toes.

00:13:06 Laura

If you’re somebody that does get that sensation of falling back regularly is they’re useful things to remember.

00:13:14 Laura

Practicing standing more often is usually good.

00:13:17 Laura

Your balance is never going to get better if you sit in the chair all the time.

00:13:21 Laura

But we do know that

00:13:23 Laura

If you’re someone that needs some support, either with equipment or with a care partner as you stand up, it’s great to practice that in the way you usually do, but maybe a few more times than you usually would in your day, because then your balance is challenged and your balance will only improve if you are on your feet and getting a little bit of challenge.

00:13:44 Laura

So it’s about the really fine line between challenge and safety.

00:13:51 Laura

and giving your body the opportunity to practice some things that are hard as long as you’ve got the support you need or the person with you to feel safe while you’re doing it.

00:14:01 Laura

And you also mentioned hands.

00:14:03 Laura

I haven’t come to that yet.

00:14:06 Laura

But hands, keep them moving.

00:14:08 Laura

Anything with your hands that’s repetitive, with even just twiddling a pencil between your fingers or with nothing in your hands, but

00:14:18 Laura

closing the hands and opening them really widely again, or flicking one finger against the other, or pretending you’re flicking water off to your hands after you’ve washed them.

00:14:30 Laura

They’re nice, easy little things you can do while you’re sat in your chair.

00:14:33 Laura

But think about big movements and explosive movements to really get the hands going.

00:14:40 Laura

So that

00:14:41 Laura

you’re asking something of those muscles and keeping those muscles moving with everyday movements.

00:14:48 Laura

But it can also be turning the page of a magazine or sticking photos into a photo album, anything that you’re using your hands for, crafty things or knitting or looking through magazines if you’ve got a real hobby based on one area.

00:15:06 Laura

All of those things are useful as well.

00:15:09 Helen

Really interesting, isn’t it, how you don’t think about some of the things that you do every day to keep doing them is really useful.

00:15:21 Helen

I think it was really interesting what you said about the leaning forwards and how that can help with balance and protecting against falls.

00:15:31 Helen

Just because, as you say, you’re having your brain learn that that movement is safe

00:15:38 Helen

That’s really important and something that I certainly hadn’t thought about previously.

00:15:43 Helen

So thank you for sharing that.

00:15:45 Laura

But the thing to remember there is that because it isn’t what some people’s brains feel is safe or normal, it can be really daunting or really hard to start doing.

00:15:57 Laura

So don’t put yourself in a position where you don’t feel safe.

00:16:01 Laura

But it’s maybe something to have a go at and just try in a small way and you can always build on it.

00:16:08 Laura

But I think practicing the things that are tricky is important because all too often we see people find something difficult and then start to avoid it.

00:16:17 Laura

So if you could keep doing those things, then you’re more likely to preserve the function of your hands or your balance.

00:16:25 Helen

So we’ve mentioned that people might start to get some exercises that are tailored to themselves during some physio appointments they might be referred to.

00:16:37 Helen

Well, we know that the physio appointments, it’s normally a set programme of weeks that you progress through and then it’s up to you to take those exercises into your routine and do them

00:16:54 Helen

daily, weekly, or as often as you can.

00:16:58 Helen

How would you recommend people continue to maintain or develop movement that they’ve learned through these appointments?

00:17:09 Laura

It’s a tricky one, isn’t it?

00:17:10 Laura

Because we know it’s important to keep it up.

00:17:12 Laura

That’s the main message.

00:17:13 Laura

And probably what the physio will say is keep practicing, keep working on it.

00:17:18 Laura

And of course,

00:17:19 Laura

Sometimes motivation is a factor, or not necessarily being accountable to someone, you know.

00:17:24 Laura

If you know you’re seeing your physio the next week, you’re a bit more.

00:17:28 Laura

You’ve got that little bit of enthusiasm or encouragement to keep going.

00:17:32 Laura

But what’s important to remember is, if you have learned a strategy for a movement that works.

00:17:38 Laura

you know how to

00:17:40 Laura

lean forwards and put your socks on more safely, or standing up from the toilet.

00:17:44 Laura

If you’ve got some things in that movement that work really important to keep it up.

00:17:50 Laura

And the reason behind that is because that’s how we learn, and that’s how our brain learns.

00:17:56 Laura

If you imagine a baby or toddler learning to walk, they make

00:18:01 Laura

so many attempts to stand up.

00:18:04 Laura

They might fall down again, but then they stand up again and they have failure after failure after failure, but they keep getting up and they keep trying again.

00:18:11 Laura

And the problem with us adults is we’re less curious and we’re a bit less resilient in our attempts.

00:18:17 Laura

But actually, and I don’t want people, of course, to put themselves in a situation where they’re unsafe and falling to practice, but

00:18:26 Laura

really that shows is we’ve got to keep persevering to get better at something, to learn any new skill or to maintain a skill.

00:18:35 Laura

So don’t give up.

00:18:37 Laura

If something works, you know, keep doing it because actually that in itself is a piece of exercise.

00:18:45 Laura

So if you’ve learned that new hand exercise or if you’ve learned that leaning forwards works for you when you stand up,

00:18:52 Laura

Just doing it once will give your brain that message again, that it’s that it’s an efficient way of doing the task.

00:19:00 Laura

your brain will learn from that.

00:19:01 Laura

So we like efficiency and then the more you practice these things, the more second nature they become.

00:19:09 Laura

So what a physio will be aiming for is you to practice something enough that that becomes your natural way of doing it, rather than a concerted effort.

00:19:18 Helen

If people get to a point where they feel that

00:19:23 Helen

what the programme of exercise they were given by the physio is starting to become a bit more unachievable to do in a safe manner.

00:19:34 Helen

Would it be prudent for them to get re-referred to a physio to have another review and maybe given a new set of exercises that are tailored to any changes that might have occurred?

00:19:49 Laura

Yes, I think that is definitely a reasonable thing.

00:19:55 Laura

It depends on the service nearby as to how realistic it is to be seen again after a certain amount of time.

00:20:03 Laura

But definitely if somebody feels they’re less safe, it’s certainly worth getting a review because it might be that the physio could add in a piece of equipment or some other ways of doing things that then keep that person safe.

00:20:17 Laura

And that’s the

00:20:18 Laura

The whole ethos and aim of physio and other therapies is to keep people safe and well.

00:20:27 Laura

So can certainly request a review.

00:20:31 Laura

And if movement has changed, then maybe it’s sensible to change what you’re doing a little bit.

00:20:38 Laura

You could make the movements a little bit smaller that you were asked to do as a physio programme, or maybe do fewer of them.

00:20:46 Laura

or maybe move a little bit slower so you’re not working as hard and fast.

00:20:50 Laura

So you can make some adaptations.

00:20:54 Laura

But you asked earlier about how people can keep things up.

00:20:57 Laura

And actually, as humans, we work well when we’re accountable to someone or something.

00:21:03 Laura

So if you know that you practice better when you’re with somebody or when you know when you’ve got to do it, then maybe some sort of

00:21:13 Laura

weekly session or time in your week when you know that you’re going to do something, whether that’s an organised something like a class, or it might be an informal thing like meeting with a friend or a family member to go through those physio movements or go through some general exercise snacks that we talked about before.

00:21:32 Laura

That can be another useful strategy.

00:21:35 Laura

We’re better at doing things with other people when we know when they’re going to happen.

00:21:39 Laura

So utilise that

00:21:41 Laura

as a good motivation factor as well.

00:21:44 Helen

Well, this actually leads on nicely to my next question, and that’s surrounding the online exercise sessions that Neuro Heroes currently work with PSPA to deliver.

00:22:00 Helen

So I understand that you deliver two types of classes online.

00:22:06 Helen

Could you tell us a little bit about the classes and

00:22:10 Helen

what people who may want to attend a class could expect.

00:22:16 Laura

Yeah, so in our online exercises, you can expect a small group, so there’s usually about eight to 10 people, all of whom living with PSP or CBD, and have been grouped together by ability.

00:22:31 Laura

So we’ve got two levels of class.

00:22:34 Laura

One has some standing elements in where people will do some movements in standing during the class.

00:22:42 Laura

The other is mainly seated, but we do do sit to stand practice, either with your equipment or maybe a part care partner, if that’s what you usually do.

00:22:52 Laura

And in each class we usually follow the same structure, but we change the exercises week by week.

00:22:59 Laura

So we’ll do a warm up.

00:23:01 Laura

Full body warm-up, getting the arms going a little bit, the legs going a little bit.

00:23:05 Laura

We’ll also do a face and hands warm-up.

00:23:08 Laura

So a bit like we were talking about movements for the hands.

00:23:11 Laura

And because we know people sometimes struggle with movement of the face, or that’s a little bit slower than it used to be, we do lots of movements of the face to get those muscles warmed up as well.

00:23:23 Laura

We might pull some silly face each other and puff the cheeks out and pucker the lips, all sorts of things like that.

00:23:30 Laura

We’ll then often have a functional focus.

00:23:32 Laura

So that’s an everyday movement that we’ll practice.

00:23:37 Laura

So we sometimes practice movements you need for getting in and out of a car.

00:23:42 Laura

There might be movements needed on the toilet or in the bathroom.

00:23:48 Laura

day-to-day real life things, movements you need for getting dressed, that sort of thing.

00:23:53 Laura

And then we’ll work on a bit of strength and fitness where we’ll do some things a bit like the exercise snacks and we might use a weight or a water bottle there to make things a bit harder.

00:24:04 Laura

And then, as I mentioned, we will always do a bit of standing with your usual walking aid or with a care partner to give people hints and tips on how to do that best and most efficiently, but to give people practice of standing because we know that

00:24:21 Laura

probably people could do a little bit more than they than they do.

00:24:24 Laura

And so it’s a chance in a week to really have a go at moving in different ways and doing a bit more than what you usually would.

00:24:34 Laura

The groups are on Zoom, so there’s a physio in front of you on the screen, and you’ll be copying the movements that the neurophysio is doing and guiding you with.

00:24:44 Laura

And they’re going to be watching you all the way through.

00:24:46 Laura

So they’ll give personal feedback and encouragement on how to do particular movements and what to focus on.

00:24:54 Laura

And it’s all about giving things a go.

00:24:56 Laura

There’s no comparison between people of whether one person’s better than the other.

00:25:01 Laura

It’s just about moving in different ways.

00:25:04 Laura

taking people out of their usual habits and moving in a feel good way.

00:25:08 Laura

It’s not a strict environment.

00:25:11 Laura

We have the music on.

00:25:12 Laura

It’s purely for enjoyment.

00:25:14 Laura

And it’s about having a physio there so you feel safe and supported, but then maybe having some really task specific things to think about, as well as fitness for endurance and strength and posture work.

00:25:28 Laura

We’ll also do some stretching.

00:25:30 Laura

And it’s a nice social interaction.

00:25:32 Laura

We don’t

00:25:34 Laura

We don’t talk to each other hugely through the class.

00:25:37 Laura

People are on mute at their end.

00:25:39 Laura

But it’s that weekly connection with the physio and with the group of people that you know are in a similar boat to you.

00:25:45 Laura

And hopefully it feels accessible.

00:25:48 Laura

So people can log in from home, do as little as much as they like, and hopefully build a bit of confidence by coming each week for eight weeks.

00:25:58 Helen

So if anyone does want a little bit of support with continuing movement after their initial physio appointments finish, or if it’s been a while since you’ve seen the physio and you just want to get back into

00:26:20 Helen

doing a bit more movement, these classes might be for you.

00:26:23 Laura

One element I think is really important to remember about these exercise sessions is that they’re specifically designed for people with CBD and PSP.

00:26:35 Laura

And we sometimes have people coming along that have been to other types of sessions that are designed for Parkinson’s and maybe didn’t feel like those classes were appropriate for them.

00:26:48 Laura

And these classes are very much designed with you in mind, working on the challenges specifically faced by people living with PSP and CBD and working at a pace that is suitable for people so that we’re really getting into the heart of things that matter to you as a community rather than

00:27:13 Laura

a community with a different condition.

00:27:17 Laura

So I think that’s also why we’ve had such good feedback is that people really feel like they’re part of something that is made for them and not for other people.

00:27:28 Laura

And

00:27:29 Laura

We’ve had some really nice evidence of how useful people have found these classes in the scores on one of the questionnaires that we get people to do before and after the classes.

00:27:42 Laura

And we’ve seen a statistically significant change in how people are feeling their overall well-being is.

00:27:52 Laura

So we have found that people are saying,

00:27:56 Laura

their well-being has improved from coming to these classes on different levels of that scale.

00:28:03 Laura

So do consider it because I think it might help you in ways that you might not consider it would as well.

00:28:10 Helen

And although it’s an eight-week block of classes, if they came along, did two or three and really found that it wasn’t for them,

00:28:24 Helen

they can choose to stop attending.

00:28:28 Laura

Absolutely.

00:28:29 Laura

There’s nothing saying you have to keep coming.

00:28:33 Laura

You’re in control of how you use these classes.

00:28:36 Laura

So we run them as an eight week course.

00:28:39 Laura

But if somebody comes along and feels like the class is a little too challenging, maybe, or not challenging enough, we might suggest a different type of class.

00:28:50 Laura

Or it might be that if somebody’s unwell, we put their classes on pause and they might come later in the year.

00:28:57 Laura

We’re really flexible and there’s always a person at the end of an e-mail or a phone to be able to help with those sorts of booking queries as well.

00:29:06 Laura

But of course, if it’s not for you, that’s fine.

00:29:09 Laura

But you’re welcome to come and have a go if you’d like to.

00:29:12 Helen

What sorts of goals do people attending the classes want to achieve?

00:29:18 Laura

All sorts of things, Helen.

00:29:20 Laura

So the biggest thing that people talk about is mobility.

00:29:24 Laura

People want confidence in walking, or they want to be able to be up for longer or walk for longer, or more specifically things like improving their stepping or improving their turning.

00:29:36 Laura

So keeping going for longer is, we can address by building fitness and stamina.

00:29:43 Laura

So we can do other movements, marching in the chair, for example, we can get the heart rate up and get a bit fitter by doing those things.

00:29:52 Laura

But things like turning and standing, we can do that repetitive task practice, like I mentioned before, and hopefully learn some strategies on technique.

00:30:02 Laura

Sometimes it’s technique can make a big difference with movements.

00:30:06 Laura

So hopefully we can help with some of those mobility goals.

00:30:12 Laura

People often talk about very specific things that they want to or they find difficult.

00:30:17 Laura

So turning over in bed.

00:30:20 Laura

We can do lots of trunk movement exercises, lots of twisting and trunk mobility.

00:30:26 Laura

So we don’t do the task itself, but we can reimagine what those movements are like and move to to address the areas that are needed for specific things like that in the classes.

00:30:38 Laura

Quite a lot of people say they want to feel fitter or stronger.

00:30:41 Laura

They just feel like they’ve lost some of those abilities and would like to feel stronger in themselves.

00:30:48 Laura

And then we also get quite a lot of people mentioning a hobby that they’d love to return to or do more of.

00:30:53 Laura

So we’ve had golf, dancing,

00:30:56 Laura

art, painting, gardening on the list, absolutely anything and everything.

00:31:01 Laura

So we can hopefully work towards all sorts of goals in these sessions and also give people ideas of things they can practice between the sessions if they feel like something’s particularly pertinent to their movement challenges.

00:31:18 Helen

You mentioned before that it’s a programme of

00:31:24 Helen

eight weeks, so you do one class a week across eight weeks.

00:31:28 Helen

If people have attended and they’ve enjoyed it and they felt they really got outcomes from attending, can they apply to attend again?

00:31:39 Laura

Yes, we’ve had lots of people attending several courses now because people get into a good habit and they want to maintain that, which is great.

00:31:49 Laura

What we say is that we ask people to make sure there’s space for any new people if they want to join.

00:31:57 Laura

So we will, if we have any newer attendees that haven’t come yet, we will give them the places first.

00:32:06 Laura

But if we have any spare places, we will absolutely give them to people that have been before.

00:32:12 Laura

Because of course, we want to help people keep those movement habits up once they’ve worked hard to reach them.

00:32:19 Laura

But what we’d really love to see is more people who are maybe newly diagnosed or closer to their diagnosis, because what we can help with is

00:32:29 Laura

using those strategies at a time when it’s really useful for people to hear about those physios, sort of golden nuggets, and they can keep using them every day.

00:32:39 Laura

And we have had feedback that people wished they’d started doing this sort of class earlier.

00:32:46 Helen

So of the people that have attended and they’ve had a really good response, what would you say is some of the feedback you’ve had

00:32:59 Helen

that people have said that they’ve been able to achieve after taking part in the eight-week programme.

00:33:07 Laura

Should I read you a few quotes?

00:33:09 Helen

Yeah, that’d be fine.

00:33:10 Laura

I’ve got a few things here that I thought might be useful for people to hear because it’s really hard to know what to expect, isn’t it?

00:33:16 Laura

And what you might get out of something.

00:33:18 Laura

So here’s what a couple of other people have said.

00:33:21 Laura

The first person said, I’m able to participate more in everyday life and have more energy.

00:33:28 Laura

Somebody else said, I get a great sense of achievement at the end of the class when I’ve managed to do some of the exercises.

00:33:36 Laura

Somebody else said, I feel more capable using my arms and legs and the classes have given me confidence in moving.

00:33:46 Laura

And then one really nice one, if anyone’s concerned about how these exercise classes are run, somebody said, I haven’t used this technology for anything like this before, and I found it very stimulating and rewarding as the environment wasn’t threatening or stressful at all.

00:34:02 Laura

They go at the right pace and seem to include everything and leaves one feeling positive.

00:34:07 Helen

Oh, lovely.

00:34:10 Helen

If someone was thinking about joining but were a little bit apprehensive, what would you say to them?

00:34:18 Laura

I’d say come and have a go.

00:34:20 Laura

It’s not as scary as it seems.

00:34:23 Laura

And we really run these classes in a way that is accessible, we hope, to everybody.

00:34:30 Laura

If you’ve got a little bit of movement in your arms or your legs, come and have a go at moving in different ways than you usually would.

00:34:39 Laura

because these classes are designed purely for movement for leisure.

00:34:45 Laura

Then we’re not trying to achieve a particular strength gain or push yourself to do a certain number of repetitions of anything.

00:34:55 Laura

It’s not like going to the gym.

00:34:56 Laura

It’s having the music on.

00:34:59 Laura

doing some things that you wouldn’t usually do, but also having somebody there motivating you, maybe pushing you a little bit harder than you need to push yourself.

00:35:07 Laura

And I think that’s where people get that feeling of a sense of achievement, because what a lot of people say with our classes is that they do more than they think they would be able to.

00:35:17 Laura

And actually, because somebody else is there guiding them and spurring them on, they work a little bit harder than they might.

00:35:26 Laura

at their own pace or on their own.

00:35:29 Laura

So I think it’s worth giving it a go, seeing what it’s like and seeing if you enjoy it and seeing if it gives you ideas, things you could also do on your own.

00:35:40 Laura

And even if you don’t keep coming to the sessions, but to get you into good habits for moving a bit more day-to-day.

00:35:56 Helen

Well, thank you very much, Laura.

00:35:59 Helen

Hopefully, this discussion has done some inspiring, and people that might have thought about doing a little bit more movement or trying a class might actually reach out and

00:36:16 Helen

sign up.

00:36:17 Helen

So if you are interested in joining Neuro Heroes and PSPA at an online exercise class, you can find details on our website.

00:36:28 Helen

That’s pspassociation.org.uk.

00:36:32 Helen

And if you search for online exercise classes in the search box, or you can get in touch with our helpline on 0300 0110 122.

00:36:46 Helen

and they’ll be able to signpost you on.

00:36:49 Helen

We do ask that there is an assessment questionnaire that you should answer before the classes take place.

00:36:58 Helen

Laura and the team will review your assessment questionnaire just to make sure they can help you in the best and safest manner.

00:37:08 Helen

But it’s been a pleasure.

00:37:09 Helen

Thank you so much, Laura, and look forward to seeing you on a Zoom

00:37:16 Helen

Zoom screen soon.

00:37:18 Laura

Thank you for having me and look forward to seeing some new faces in the classes soon.