Stockpiling Useless Equipment

We are building an incredible collection of short-term used equipment, and at quite an expense, but it is a corralry to the progression of the disease.

First came a treadmill when Parkinson’s was still regular – that turned out to be irrelevant.

Then came a table tennis table because it’s great for PD. I don’t use it, but at least others do and will continue to.

The cane made an initial entrance (first a fold up and then a proper one).

Then came the walker. It’s still useful inside the house when I feel well enough to move (shuffle/slide) from point A to B, but outside it’s redundant. I can slide around the downstairs of the house slowly with the walker some of the time and at other times with the wheelchair, but eventually the walker will become less and less effective.

Then came the electric wheelchairs – two of them. I’ve decided to stop using them because, to be honest, I’m a danger to myself and others. Twice I froze while driving. In Thelma and Louise style if there had been a cliff (or a busy road) straight ahead I would simply have gone over. Together with that I couldn’t see people behind me. They have remote controls, so they might still be useful when a carer is around.

My glasses changed to prism ones, which helps a little, but not much.

Now the exercise bike is ready for a change. It’s a normal high one, and today I almost fell off it. My physio, who is almost always right, advises a low rehab-style bike with arm and leg movement capabilities.

We’ve moved downstairs, and the shower chair arrived (which is still great by the way) and my car has gone, and inch by inch the second-hand materials pile up.

Then came the glorious chair, which I love.  

The yoga mat is still in daily use, as is the roller, although I fell off it this morning.

This pile-up of equipment is draining both money and mental energy, but we move on. There are so many gizmos I could try, but there’s a limit, and the pile keeps growing. No doubt there’s more unpleasant equipment to come, but the good news is I’m positioning myself as a potential product manager for this group of products.

I went out this evening for the first proper time in the manual wheelchair, and it was actually okay. The truth is the work is all on the other person, which makes me feel bad because I’m not light and now eat lots of eggs, yoghurts and cheese to avoid choking incidents – two happened today, thankfully minor.

The next big expense will be a carer, which will hopefully ease a lot of strain on the family. The good news is there are no pharmaceutical treatments, so that avoids the need to invest in a whole new batch of medications, although acupuncture, pilates, physio, massage and gym work with the Physio are a mini-industry on a weekly basis.

Change is happening at the most rapid pace, yet the days drag, even though I have a lot to do. I thought the electric wheelchair was simply the best thing and enjoyed the freedom of the six months or so with it, but it’s time to move on. It’s important for me to acknowledge it, accept it and move forward.

PSP moved at seemingly incredible pace but I am most grateful of all that my cognition is not taking the same path. I am still able to write about it and sensible enough to make the right decisions to move onto the next phase. I pray this continues as this is the most important thing.

Oh – there is one other thing – the Australian Open Tennis is on TV – so for two weeks I have a great distraction as I actually enjoy watching tennis. And the timing is perfect as it is on throughout the night and the morning.