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Julia’s story

“This is the story of my journey towards acceptance and peace as I travel without a map through these unchartered waters.”

I am Julia, I love to laugh. I have four children and eight grandchildren.  I was born in Woking, Surrey but have travelled, worked and lived abroad.  I was a professional dancer, have owned my own gym and have always been able to turn my hand to anything.  As I have always been a “doer” and fiercely independent I find my condition with PSP very frustrating.  This is the story of my journey towards acceptance and peace as I travel without a map through these unchartered waters

My story starts in late summer 2018.

My flip flops must be getting old and stretched. These were my first thoughts as I somewhat awkwardly walked to the corner shop.

I had been to the GP about why I was feeling dizzy. I was upgrading a house in a nearby village and just thought I was doing too much! I was given anti psychotics as a remedy for the dizziness. It did help but it meant I couldn’t drive which was really difficult.

Little did I know what was to come…

At a routine dental check up I commented to the dentist that I felt something wrong with the back of my throat and I was struggling to get the end of a sentence breathing normally. This was beyond the dentist remit and I put it down to the disliking of having to spend four hours on the phone as part of my job, which no one in the team enjoyed.

I had gone to the appointment on my bike and on leaving the surgery I fell off my bicycle into a flower bed (my second fall, I hope nobody saw!)

By mid-summer 2019 my health had started to deteriorate. There was nothing I could really put my finger on just lots of little things. One evening, my partner was over and I had remembered him talking about his mother’s UTI’s and wondered if that was the reason for the urgency I felt to get to the bathroom.

The subsequent GP appointment saw the doctor dismiss my concerns although a blood test was prescribed. When the blood tests came back clear, I knew I needed another appointment to investigate further. The receptionist gave me an appointment for later that same day. Lucky me! Appointments are hard to come by.

Later however I received a telling off for accepting the offered appointment as it was apparently for urgent matters only and the doctor didn’t feel I fit that category!  I have never liked to bother doctors and this stigma of being a nuisance was uncomfortable.  As I was obviously still “whinging” about feeling dizzy, the doctor did refer me to the neurology department at the local hospital where I worked (I tell you that as it cut months off my wait to see a neurologist later). Unfortunately the referral was rejected, and an MRI was requested.

In the meantime, it was a Saturday and I was having chest pains so I took myself to the hospital for an ECG but they found nothing and I was sent home.  Perhaps this was the start of a cascade of stress related symptoms?  Certainly, the uncertainty, the ongoing nuances, the lack of knowledge and holding it all in were getting to me.

I focused on my plans for retirement on the 6 September. I was going to retire from my position at the hospital appointments division and look after my grandchildren while my daughter-in-law trained as a midwife.

After the MRI the neurological department finally accepted the referral although it was still considered routine and so there would be a considerable wait for an appointment (This is where my hospital connections worked in my favour).

The referral had only been submitted the day before, it had been triaged overnight and marked as routine. The first task daily, by appointment staff, was to fill any cancelled appointments. There were just 20 minutes to fill an appointment at 10am that day and I was the only person that we were going to be able to get to fill the slot before the 20 minutes were up (I didn’t jump the queue, I just got lucky!).

On the 5 September as a result of the MRI the neurologist, a movement disorder specialist, told me I probably had Parkinson’s disease (this will be familiar to almost everyone with PSP) and was given a follow up appointment for an agonising six months time.

I knew nothing about Parkinson’s and was looking for some informational leaflets as I left.  There was nothing! That night I spent searching the internet looking for answers. But what I found left me feeling devastated. I just had to keep it together for one more day, my last day of work before retirement. The following evening when I finally went to bed, I broke down in tears. I apologised to my partner, blew my nose and tried to sleep.
Realistically I was going to have to keep up a front.

Shortly after this I had to insist that my partner and I split up, I couldn’t expect him to care for me. That was hard but we are still friends.

By December my symptoms were becoming rapidly worse, and my appointment was brought forward with the neurologist.

My daughter came with me to this appointment and I felt the neurologist’s attention was focused on her rather than on me. My daughter is extremely attractive. The doctor quickly digressed, and the conversation became about her Canadian accent (which is where she had been living with her Canadian husband and her family.).

At this point I could still walk with an arm swing, although over shorter distances and I had slowed thumb to finger reactions, but it was still doable. The reports of my eyes not opening as normal seemed to fall on deaf ears.  I was put on Parkinson’s medication and sent away, bet that’s a familiar story to many of you?

My daughter, with her usual tenacity and unerring determination to look for answers had found a Danish therapist named Lillian who was trying to set up a website in English and was convinced that the disease was entirely due to stress. To be honest, I thought so too. I took up the offer of therapy in exchange for correcting the English, allowing my sessions to be videotaped and used on the site.

We did both put in hours of work with each other, but I wasn’t getting any better. I was still at the gym every day and then lockdown hit…

At this point, I had done everything asked of me, including moving into rented accommodation to relieve the stress of living with my mother.

There had been a further telephone consultation with the neurologist and a change in medication. The change in medication continued to make no difference whatsoever.

By this time I had finally been contacted by the Parkinson‘s nurse.  She had recommended yet another change of medication and also weekly phone calls to support me. None of this support ever happened and I was increasingly feeling let down by the system.

I had been to the opticians for a regular eye test and discovered that I had nystagmus recorded on my notes for the last six years. I had no idea, I had never been told. The optician wrote to my GP asking for an urgent appointment to the hospital as this could be the cause of my still unexplained dizziness.  The doctor refused to refer me to the hospital, I was told I was already under a neurologist that should be sufficient.

At this point my daughter moved back to England with her family and stayed with me for a few weeks while they found accommodation.  This period also marked the end of me driving, I no longer felt safe on the roads.

During this time I had received a letter from the neurologist stating that I probably had “atypical” Parkinson‘s. As far as they were all concerned there was nothing else they could do for me and I was left feeling totally abandoned.

My daughter again with her usual tenacity, researched the atypical Parkinsonism and found a doctor in Southampton that specialises in the condition.

All this time I was still working with Lillian, who was trying to complete and promote her website. I was feeling incredibly despondent as nothing was getting any better and I felt I was being told it was my fault for not trying hard enough.

I think my GP was glad to get me off her back and referred me to the doctor in Southampton. Thank goodness, at last someone was going to help.

By this time I had had several falls although I had still been able to pick myself up if I could get onto my knees.

To make life even more complicated, I was also diagnosed with diabetes.  Now suspected to be triggered by stress it was uncovered by a trainee GP.

It was November by the time I received an appointment to Southampton and I had been ill for over a year. I had tried craniosacral therapy, acupuncture and was continuing to do everything asked of me by Lillian.

Going for my appt in Southampton the neurologist immediately diagnosed PSP (as best they can) with the tell-tale sign of my eyes not being able to follow his finger. I was put in touch with PSPA and the Hampshire Support Group has been a fantastic support network that I am grateful for.

I had tried to stay with my original GP when I had moved as I wanted consistency but events meant I had to change to my new local GP. Oh boy do I wish I’d done that sooner. They were brilliant, putting in place all the things the other GP didn’t do including the urgent referral to the eye department at the hospital. I cannot speak highly enough of them.

Coupled with the support and diagnosis from the hospital at Southampton this feeling of care was a welcome relief. The neuro physio has been a tremendous help constantly answering my emails and going back to the doctor for answers to my questions. The neurologist in Southampton alerted the hospice nearby and they are now on my case.

With the combination of the new GP and the support of Dr Ghosh and his team in Southampton I was suddenly inundated with phone calls, support, help and equipment to make my life easier.

In trying to maintain my independence I had bought and trialled an adult tricycle, the anticipation the night before it arrived was so great I couldn’t sleep.  I was soon disappointed when I found even trying to mount it was difficult and I reluctantly took to a scooter that I had originally bought for my 93 year old mother.

By Easter 2021 I have had to move to a flat with supported living. l wear a pendant that alerts a member of staff and not the ambulance, as before.

My sister is coming every morning to get me up and often comes back to put me to bed. My daughter is also involved heavily in my care, coming over often. I feel so guilty.

The feeling of guilt is what is driving me towards relieving the pressure on my family and have a live in carer.

I have been granted CHC (continuing health care) so now I must find someone to look after me. The hardest part is finding an approved agency.

As of summer 2021 after a couple of false starts I now have a live in carer.  This transition and loss of independence has been one of my biggest challenges.  My carer however has wonderful experience, she is well versed with in the MND field although I am her first patient with a PSP diagnosis so we are learning together.

I am now in a wheelchair and my speech has been deteriorating and I now have an electronic device to help communicate.  I have been researching eye crutches as I continue to find eye closure an issue but fortunately dizziness is no longer a concern.

My journey isn’t finished and I continue to be surrounded by the love of my family and the noise of my grandchildren.

If nothing else I hope that this story helps anyone going through the process to know they are not alone. It is certainly a bumpy ride but there are people out there cheering us on and wanting to help. I may not be here as long as I would have hoped but I plan to leave my own legacy and donate my brain to further the PSP cause and find a better solution.

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