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PSP forces you to make tough choices at high speed and adapt to them just as quickly. I think we are doing this well overall, although far from perfectly.
In the space of a year, we have made so many decisions. It is not just the choices themselves, such as skipping our joint 50th birthday cruise, retiring, stopping driving, rejecting the recommendation for a feeding tube and changing my diet completely, or moving downstairs and renovating. It is also the ability to time these choices well and adapt to them fast. I have decided to term it: choose, time, adapt and move-on (C-TAM). I so wanted it to be C-BAM but that’s life!
A good example is the manual wheelchair. I could have continued for a while with the walker or the electric wheelchair. I can still take a few steps without support, but I am extremely slow, have very little balance and was falling a lot. I could have stayed with the electric wheelchair, but I often felt out of control and there were incidents where my hand froze on the forward joystick and I could not stop.
My decision came from one goal, which is the same goal that shaped my diet. I want to reduce or stop falls and choking and avoid a PEG feeding tube for as long as possible. I want to prevent anything that could additionally accelerate the progression of PSP. Is the timing perfect? No one can know, but overall I think it is.
There is always the danger of moving too fast and giving in versus being too stubborn and putting yourself in danger – I doubt anyone gets it 100% right but my view has been to be slightly ahead of the PSP curve.
It is awful to move into a manual wheelchair, especially when you are big. But a couple of weeks in, I can say that even old dogs can learn new tricks.
Because PSP support in this country is limited, I rely on support groups and YouTube. For example, I watched videos about how to dress while sitting down. It was difficult, but I finally got it once I realized that I needed to turn the chair toward the wall and the bar so that I could lift myself at the right moment. I have also watched videos on how to drive a manual wheelchair and learned the huge benefit of using doorframes and similar structures to help propel myself indoors.
This proves to me that even at 50, which is not as old as some, I can still change and adapt. The key is choosing the right moment, learning the techniques that allow quick adaptation and maintaining some positivity. It helps to embrace the challenge and find humor in the absurd moments along the way.
As the journey continues there will be more of this need to choose, time, adapt and move-on (C-TAM). I hope we remain as agile as we have proven so far.
