Liz Baxter has been a Helpline Volunteer since January 2018, following her dad’s diagnosis of PSP.
“Like everyone else, I’d never heard of PSP so I was really glad there was such good information and support available on the illness from PSPA.”
“I was also really lucky to have a brilliant Neuro-Outreach Matron, Julie Brignall-Morley and also a fantastic District Nurse, Carol Tinsley who I could also go to for extra help and advice – without them, I couldn’t have looked after my Dad at home and I will be forever grateful for their expertise and kindness.
“When I saw a volunteering advert in PSPA Matters I thought I’d call in and see if I could be of use to someone. After what we had gone through, I really wanted to help someone else. Soon after, I completed the training and was ready to take my first call.
“Initially I felt quite scared, I guess it is the fear of the unknown and of doing a different ‘job’ to your usual ‘day job’ so I wasn’t as confident. I got as prepared as I could – paperwork out, laptop on and also reminded myself I had done the journey from diagnosis right through to death, so had good insight into living with the condition.
“Speaking to people, you see how they are struggling to deal with what they have been presented with. It is so difficult when there is no real pattern, everyone’s journey is different and new symptoms present and then switch on and off all the time.
“When I was caring for my dad, I promised him he could stay at home. It was the most difficult thing I have ever done in my life, but also probably, in hindsight, one of the most rewarding. It’s impossible to describe the stress I felt at times managing his care and I think I probably did go a bit crazy in places. So, when someone calls and cries down the phone, is stressed, panicking or feels unable to function or carry on – I can totally empathise with what they are going through and it is good to pass on some ‘top tips’ that I picked up along the journey to help others.
“Watching his old life being dismantled like this must have been unbearingly hard for David. Not that he ever complained or asked ‘why me’?
“He was the easiest person in the world to take care of. I nursed David for four and a half years. He had a PEG fitted, was on a ventilator, could no longer see or speak. In the end, he was bedridden.
“Maggie Rose, one of the first employees at PSPA, got in touch. I attended the very first meeting and helped make teas and coffees. When I was asked to help coordinate the meetings I didn’t hesitate. I’ve done it ever since. Remembering the impact of Michael Koe’s call, I wanted to try and have that impact on other families.
“I think living through an experience like this makes you a more patient, kinder person and you learn a lot.
“After Dad died I thought, I have all this time on my hands I should give something back. I work full time but volunteering on the Helpline doesn’t interfere too much with my private life – it is just a couple of evenings a month and the other volunteers are great and always happy to swap evenings on the rota if a party or meal outfalls on your allocated shift, so it is easy to commit to and flexible.
With both PSP & CBD being so rare and the symptoms being so unusual and at times alarming, it comforts me to know that people affected by PSP & CBD can pick up the phone and speak to someone who has been there and who understands.”