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Suzanne’s story

“I am not sure how I would have coped without PSPA’s support.”

Suzanne Craig’s husband, John, was diagnosed with PSP in October 2021. Here Suzanne shares details of John’s diagnosis and how she is now keen to help other carers.

“John and I have had a wonderful life together. He is a very kind and caring husband, and a great dad to our two children. He was a RAF Wing Commander, so was very busy, outgoing and used to taking the lead. He was physically fit too, not only for his job but also because he played squash and was part of a bob-sleigh team too.

John started to get physio privately, from around 60 years old. Such an active life had started to take its toll and he needed some regular session to keep on top of aches and pains. It was actually his physio who spotted his behaviour changes and suggested to John he should investigate.

The changes he was talking about were largely personality changes. He could lose his temper so quickly, very unlike him, and then forget about it just as quickly. This was very upsetting for me. He was apathetic and his voice became low so it was hard to hear him. He didn’t really notice the changes though, and at one point suggested I needed to get hearing aids!

In 2021, I went away for around six weeks, I needed a break from the pressure caused by John’s personality changes so visited my sister. When I returned I noticed a big change in John’s mobility.

After, John’s physio suggested we investigate, we sought private neurology advice. Within 20 minutes of arriving for the appointment, the consultant had diagnosed PSP. But is clearly had been developing for years.

Following John’s diagnosis, his condition seemed to accelerate. My son found PSPA in a google search and honestly, I am not sure how I would have coped without the charity’s support.

The Helpline in particular is so supportive. They not only helped in terms of practicalities – pushing me to get support at home. But also, emotionally – there were days I’d just call up and cry down the phone to them. They were so reassuring and they sent all the useful information and publications out, which I have shared with the GP, John’s physio and more recently his care home too.

The PSPA Helpline said I should ask for a dedicated GP, which I got straight onto. They were right, this really did help, and ensured they could read up on what PSP was and how best they could support John.

The NHS were great at providing small pieces of equipment, such as a chair, a walker and raised toilet seats. But everything else, we sorted ourselves.

One of John’s symptoms, that I struggled with most at this point, was him not being able to sleep through the night. He was up several times. I organised for carers to come in overnight so I could get a good night sleep, and be in good health to support John during the day. I also, would organise for carers to pop in during the day, once or twice a week. This was mainly so I could pop out to get the shopping and attend appointments myself, without worrying about John.

John’s falls were increasing more and more. And at 5 foot 11, and weighing in around 14 stones, it was impossible for me to get him off the floor on my own. My neighbours were a massive support, and would pop in to help with this. I used to call an ambulance, but although they were great when they arrived, I sometimes could be waiting five or six hours for them to arrive.

It was the falls really, which led me to look into housing John in a care home. His falls could be quite scary and at times involved a hospital stay.

My biggest criteria for a care home, was its locality as well as the facilities. I really wanted to be able to visit most days, and luckily a recommendation by a friend about a care home in her village, 10 minutes away, was successful. Following John’s last hospital stay, he then moved into the care home in October 2022.

He is happy in the home. He has built a great repour with the staff and he no longer experiences falls, due to staff being on hand to help him.

I still organise for him to have his physio regularly, as at the moment he still does have his mobility and we think this helps.

John now living in a care home has also given me a new lease of life. I have time now to see friends and family, and even take an odd holiday. This is very refreshing. It has also helped me to regain my role as John’s wife.

I received so much support from the charity, I am keen now to offer support back. Share some of the knowledge and tips I have developed since my husband was diagnosed.”

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