Evolution and adaptation

MARIE: We have a book called The Comforts of Home for Parkinson’s Disease which we bought quite soon after Jon was diagnosed when we were looking both for information and also, in hindsight, for reassurance that PD was quite manageable if only one followed the seven-step plan or abided by the five M’s or remembered the twelve golden rules. As it turns out (happily and sadly), books about Parkinson’s don’t tend to offer up the shallow comforts and wild promises of more main-stream self-help books.

But The Comforts of Home does give lots of very useful advice and tips, and indeed our home is turning into a PD-enabled comfort zone. We don’t want the place to look like a home for the disabled (though interestingly, it was in fact the home of a disabled woman and her husband before we moved in), but nor do we want to disguise Jon’s illness as if it was some shameful secret.

So he’s got his big floor-to-ceiling pole to help him get in and out of bed and a handgrip in the shower plus another one ready to be fitted next to the urinal when necessary. Yes, the urinal – the plumber who installed it said the only other time he’d put one in a private home was for a gay couple. But a standing wee is much easier than sitting, particularly in the middle of the night. We also went for a toilet with extra height (easier to get up off), an extra-large shower cubicle with an extra-wide door and room for a stool, and lots of bright lighting.

In the living room we’ve done away with throw rugs and just have one large rug that’s been stuck down with carpet tape to reduce the risk of tripping. The sofa has hard boards under the seat cushions to give better support, we’ve abandoned our beloved deep easy chairs because they were just impossible for Jon to get up from, and after a year-long search we have now finally found an ‘electric chair’ that both reclines and has a seat lift and even looks quite reasonable – not cheap, as the beast has to be upholstered in leather so Jon can glide frictionlessly in and out of it.

Moving into wardrobes and cupboards, bookcases and drawers we’ve tried to take into account that Jon finds it difficult to reach high shelves and impossible to reach low ones. From that perspective, the current kitchen is a problem area as most of the lower cabinets have shelves rather than drawers. Anyone would find it difficult to reach stuff at the back of the bottom shelf, and for Jon those areas are about as accessible as the top of Mt. Everest. There’s no new kitchen in our budget just now, but we should be able to scrape together the funds for a refurbishment in a few years.

All in all it’s a bit of a balancing act. When buying new stuff or doing up the house it makes sense to pick products and solutions that will continue to work as Jon’s PD gets worse, but on the other hand it’s important to keep living as normally as possible and not start relying on aids before they’re really necessary – because, as the occupational therapist says, you use it or you loose it. In that spirit of grin-and-bear-it, we’ve just been to the sales for a pair of padded ski pants for Jon so he has one less excuse for skipping the ‘daily’ walk. For some reason, the cat is terrified of the trousers and goes into immediate panic mode when he sees them. They’re hardly the height of fashion, but I honestly don’t think they’re that bad.