I’ve been diagnosed since 1984 (I was 36 at the time and I hope to one day to be able to say that I’ve had MS for half my life). I was walking for ten years, on crutches for a while and not walking (or standing) for the past six years. A few months ago I had another exacerbation and fell from my chair and broke my leg. I’ll make it with a little help from my friends.
We have to start thinking outside the box. You can get a shower seat, shower bars, a ramp, and the like, and get yourself set up for a while, but MS usually progresses and accidents can happen and some equipment becomes unusable as time goes on.
We want (need) more than most average individuals can get on their own. We need to band together and find a solution that fits our needs. “Assisted living” as it currently exists is not an answer. The same goes for nursing homes. Unfortunately there’s nothing in between.
We need collective action to solve our problems. We hate to lose our autonomy. We’re too young and too smart yet to go into nursing homes or assisted living that doesn’t meet our needs.
This is my vision, I think it’s within reach. PWMS need a place where we can get
· regular physical and occupational therapy,
· massage therapy,
· yoga and meditation classes,
· roll-in showers (when ordinary bath chairs become too difficult to use),
· modified bathrooms and kitchens for wheelchair access,
· a pool for aquatherapy, invaluable for relief of spasticity,
· accommodations and respect for individual dietary regimens,
· non-interference with individual choices of resident’s medical treatments,
· respect for individual choices of alternative therapies,
· housekeeping help (e.g. laundry, shopping).
I know this is going to run into money. Most of us are not in a position to bear the full cost. I don’t have the answer in my back pocket. If I did it would be a reality already. But that’s why I call it a vision, and when you consider the costs of the alternatives my vision looks cheap and what value would you place on self respect? This can happen!