A few months ago, I was running a 10k. This morning, I was walking home from synagogue, 400 meters away according to Google Maps. It took about 15 minutes of hell, walking at the slowest pace imaginable—well, actually shuffling. I could hardly walk, and it was terrifying. My balance is so bad that when I stand still, I instantly fall back, and thankfully, with willpower and my cane, I got home. I made it.
I put my mind to it and made it.
Why was it so hard? I walked there okay-ish (really, I slid there, not able to lift my feet), but it was relatively okay.
I don’t know! Balance, slow gait, and vertical eye palsy, which I also have, are hallmarks of PSP, so I shouldn’t be surprised, and it is not the first time, but it is so hard to accept that things have gotten this bad. My world has shrunk so much it is almost unfathomable.
I am left with a massive choice: Do I do the logical thing and move to a wheelchair, buggy, or frame, or do I fight on with the stick?
Each comes with pros and cons. Obviously, the physios will say the first option to avoid the risk of falling, which is very real and dangerous.
But it is giving in to the illness and losing the very little freedom I have left. I know what people will say—plenty of people use a wheelchair or frame; it is not a big deal. I know that, but to a 49-year-old who a few weeks ago was driving a car and running 5k, it simply is…
I gave up driving of my own volition but probably far too late. Will I keep going and fall dangerously? I can’t do this. But to voluntarily surrender is not pushing hard enough. That is not me. It is an age-old debate.
The answer is almost certainly going to be the first soon, but I just can’t accept it yet, especially as I have better moments. I reckon my unofficial shuffle as a percentage of walks is about 35%, which is clearly too high. A month ago, I would have gauged it at 20%.
This is not good KPI performance.
Why am I writing this?
I am hugely positive and remain so in spite of everything, but at the same time, I simply have to accept and not deny. It is simply avoiding the truth and putting myself in massive danger. I have to fight against the real enemy and opponent, not someone or something I underestimate. I have to make the right calculations.
So which way to go? I have to give it some thought.
I know it is hard to hear or read, but I need people who know me to be aware of the reality of the situation and help me, as I am not just “you look great.” Obviously, that is fine when I am sitting down, but it is not my reality.
There are positives today… apparently, I made my wife laugh. I was sleep-talking and apparently doing some sort of comedy routine about a jacket potato. My daughter heard us laughing. I, of course, remember nothing, but at least it seems I have some “unconscious stand-up/lie-down comedy skill.” Please.
3 Responses
My husband insisted on walking the dog on his own’ just around the corner’. He returned shortly afterwards with his face and hands bleeding after falling forwards on the gravel lane, Bruno had pulled on the lead to avoid a car! The lady in the car ran after Alan, I think she thought he was drunk. He apologised, insisted it was his fault and felt totally embarrassed. I was holding a flood of tears back whilst bathing the blood off his face, the face I had loved for over 50 years and although at this point he had not been diagnosed I feared he had PD-MSA. After this episode we went from my husband linking me upright, then linking me and almost pulling me over ! Moved onto the walking stick, then to frame with wheels, to frame without wheels. He tried everyday to walk in the house holding onto furniture, me behind ready to catch him if he fell…and he did. He moved onto the wheel chair… there are thousands of people using wheelchairs and have a good life , it wasn’t the end of the world …it took all the pressures and hard work trying to get back to walking, he still did exercises in his wheelchair, we always had hope., loads of it. We took everything in our stride, did what we felt best for both of us. Good luck x