I’m writing this partly to help me come to terms with the decision I’ve made in the face of PSP, and honestly, I need to explain it to myself as much as to anyone else. If it feels a little defensive, that’s because it is. So many people have asked me about this, and I want to explain.
I’ve always been a fairly black-and-white person when it comes to decisions. When something becomes unsafe, I act. That’s why I voluntarily gave up driving when I realised I was a danger to myself and others. I couldn’t see the traffic lights properly, and my vision was blurry.
Now, I’ve made a similar decision about my electric wheelchair.
Inside the house, I can often manage with a walker, though sometimes I still need the wheelchair depending on the time of day. If I rest and avoid being too active, life feels safer. Technically, I could still shuffle around at times, sort of hopping from counter to table, but that would be asking for trouble, and yes, I’ve tried, and it wasn’t wise.
I probably could have coped a little longer, especially in the mornings when I feel stronger. But three incidents made the decision clear. I froze while driving forward with my hand on the joystick; if there had been a cliff, I would have gone over. I almost reversed into children because I can’t see behind me. At a wedding, I froze during the ceremony, and we struggled back to the car because the wheelchair was not manual and hard to manoeuvre.
Others might persevere, but I realised it was time to stop.
The danger with those better periods is that they make you feel overconfident. History shows that’s when I make fundamental mistakes. I retired early to reduce stress, and while I sometimes wonder if I did so prematurely, I know it helped me cope with the disease. Without that decision, I’d be far worse off.
We rented a manual wheelchair, and I tried it twice. It’s hard work to push me because I’m not small. To make life easier for those around me and give myself a little control in an ever-shrinking world, I bought a lightweight wheelchair designed for taller, bigger people. It arrives in a couple of days. It’s a good model, though not exactly thrilling.
Alongside this, we’re starting the carer process. I can’t quite believe it’s happening so fast, but it’s not a difficult decision. It’s needed.
If I planned based on my best moments, I’d eat normal food because I don’t always choke, use the electric wheelchair, and take the stairs. But the risks are huge. I could choke, crash, or fall.
There are areas where I probably take too many risks. For example, I haven’t adopted all the best ways of changing and I often take chances using the bars for support instead of relying 100% on a chair. But you can’t change Rome in a night.
Some people take a different view and keep driving far too long. When I quit, I knew I was already gambling with other people’s lives.
My daughter’s wedding is in a few weeks, and I need to do everything I can to take care of myself. That’s all I can really do in the face of PSP, along with buckets of faith and prayer.
I’ll admit, the last day has been tough. This is everything I didn’t want. But it’s unbelievable how quickly you get used to reality and move on.
I’m okay. I’m doing all I can. And I will keep fighting.
