The Joys & Sorrows of MS Disability Aids
So, I've been thinking quite a lot about the various disability aids, i.e., mobility devices, that are part of daily life with multiple sclerosis. Also, how insanely stubborn I can be about using them.
As most of my friends know, I think, I've been using a cane for a long time. For most of the years since my initial diagnosis (2005), it was a "just in case" device. The symptoms of MS are unpredictable, and having a cane often prevented me from taking a sudden spill when my right leg decided not to work anymore. I buy all my canes from the same place: Fashionable Canes. They have a great selection, will cut the cane to size, and offer fast shipping and good prices. But not all canes are created equal, and there's a lot to consider, especially in terms of the grip.
For a long time, I used a very heavy cane with a hame handle. The hame is actually part of a horse harness. Then I switched to a slim cane with a Fritz handle. All that time, I was using it in my right hand (because my right leg is the one that tends to go on vacation the most). Turns out, I was doing it wrong - and if there's ever any proof needed for the reason we have physical and occupational therapists, there it is. So, I switched to my left hand. It was awkward at first (still is a little bit), but I'm getting better with it. Still, the slim cane didn't feel very stable over the past year, and I knew I needed to make a change.
It was then that I made the tragic mistake of trying a palm-grip cane. Much more stable, unless you count the fact that it caused nerve damage and I lost feeling in my arm from the elbow down to the three outermost fingers on my hand. I'm now about 90% recovered from that, and if anyone needs a 36" left-handed palm cane, let me know. You can have mine! I now use a heavier cane with a fritz handle and so far, so good.
Alas, the cane is only good for good days or short distances. It sucks at the bad days, longer distances. What to do? Forearm crutches. You'd think choosing those would be easy, but let me tell you my friends, it is not. The regular ones you can pick up at any Walgreens weigh about 900lbs and are clunky as hell. You end up sounding like the Terminator at the end of the original movie. My initial choice was smartCrutch but it appears that the company is run by a team of people who fail to realize that in order to sell a product, you actually have to have it in stock. They haven't - for months. I eventually gave up, and after a lot of research, went with Ossenberg Crutches. Those of you who saw me tooling around the Nebula Awards this weekend got to see them in all their glory. I'm quite happy with them so far - they're light, easy to maneuver, and quiet. So, for those days when the cane won't do, there's the crutches.
You'd think that would be enough, but not so much. My physical therapist has strongly recommended that I get leg braces. Specially, PhatBraces, which help the user by returning energy from each step taken. (Energy conservation is the name of the game in MS patients.) So far, I've resisted doing this, mostly because I don't like how the braces feel on my legs and feet. Maybe the custom ones would be better.
And then there's the last step. Right now, on my bad days or when I'm in an area that requires a LOT of walking, I'm in need of an electric wheelchair. This is the most annoying part of all these aids so far. You see, my physical and occupational therapists want me to have one - places like WalMart or when I'm on campus at Western - are simply too far. I can walk it (with forearm crutches), but I'm rapidly exhausted (energy conservation, remember?). Even the Nebula's this past weekend were a lot, and by the time I'd been there two days, I felt like I'd gone a few rounds with Ali. It took two days home to recover from two days there.
The problem is that my insurance company won't pay for the kind of chair I need right now (a transportable one). I've got my eye on the KD Smart Chair (and a couple of others like it). What's nice about it is that it folds up (like a stroller), which means I don't need either a new vehicle or massive (and expensive) modifications to our existing one. My insurance company will only pay for a regular electric chair AND if I must use it in the home. Well, I don't have to use it in the home and even if I did, I couldn't - my home is too small and two floors. (As an aside, my occupational therapist really wants me to move and use the chair at home when I need to - inside the house falls, which happen to me on a regular basis, are very dangerous, as are the stairs.) And a regular chair would require a new vehicle or modifications. And I'd have to move to a different, accessible house. Are you beginning to see the level of complications involved in this? So, that mobility solution is on temporary hold until we figure out some way to tackle the problems involved. (This is one of those times where money might not buy happiness, but it's very good at solving certain problems...)
I leave for the summer MFA residency at Western in just a few weeks, and the forearm crutches are going to have to do the job. If the campus were on a flat surface and not at an altitude of almost 8000 feet, I'd feel more confident. The other trick is how the hell does one carry all this stuff, even if I have it? I guess I could wear the braces, clip the cane to the chair, hold the crutches, and then pray it doesn't rain while I'm trying to get from one place to another. :-)
Well, in any event, we've got a large incoming group of fiction students that I'm excited to meet, and I anticipate a very busy summer session. Wherever you are and whatever you're doing, I hope all is going well in your world.
Write on,
Russell
As most of my friends know, I think, I've been using a cane for a long time. For most of the years since my initial diagnosis (2005), it was a "just in case" device. The symptoms of MS are unpredictable, and having a cane often prevented me from taking a sudden spill when my right leg decided not to work anymore. I buy all my canes from the same place: Fashionable Canes. They have a great selection, will cut the cane to size, and offer fast shipping and good prices. But not all canes are created equal, and there's a lot to consider, especially in terms of the grip.
For a long time, I used a very heavy cane with a hame handle. The hame is actually part of a horse harness. Then I switched to a slim cane with a Fritz handle. All that time, I was using it in my right hand (because my right leg is the one that tends to go on vacation the most). Turns out, I was doing it wrong - and if there's ever any proof needed for the reason we have physical and occupational therapists, there it is. So, I switched to my left hand. It was awkward at first (still is a little bit), but I'm getting better with it. Still, the slim cane didn't feel very stable over the past year, and I knew I needed to make a change.
It was then that I made the tragic mistake of trying a palm-grip cane. Much more stable, unless you count the fact that it caused nerve damage and I lost feeling in my arm from the elbow down to the three outermost fingers on my hand. I'm now about 90% recovered from that, and if anyone needs a 36" left-handed palm cane, let me know. You can have mine! I now use a heavier cane with a fritz handle and so far, so good.
Alas, the cane is only good for good days or short distances. It sucks at the bad days, longer distances. What to do? Forearm crutches. You'd think choosing those would be easy, but let me tell you my friends, it is not. The regular ones you can pick up at any Walgreens weigh about 900lbs and are clunky as hell. You end up sounding like the Terminator at the end of the original movie. My initial choice was smartCrutch but it appears that the company is run by a team of people who fail to realize that in order to sell a product, you actually have to have it in stock. They haven't - for months. I eventually gave up, and after a lot of research, went with Ossenberg Crutches. Those of you who saw me tooling around the Nebula Awards this weekend got to see them in all their glory. I'm quite happy with them so far - they're light, easy to maneuver, and quiet. So, for those days when the cane won't do, there's the crutches.
You'd think that would be enough, but not so much. My physical therapist has strongly recommended that I get leg braces. Specially, PhatBraces, which help the user by returning energy from each step taken. (Energy conservation is the name of the game in MS patients.) So far, I've resisted doing this, mostly because I don't like how the braces feel on my legs and feet. Maybe the custom ones would be better.
And then there's the last step. Right now, on my bad days or when I'm in an area that requires a LOT of walking, I'm in need of an electric wheelchair. This is the most annoying part of all these aids so far. You see, my physical and occupational therapists want me to have one - places like WalMart or when I'm on campus at Western - are simply too far. I can walk it (with forearm crutches), but I'm rapidly exhausted (energy conservation, remember?). Even the Nebula's this past weekend were a lot, and by the time I'd been there two days, I felt like I'd gone a few rounds with Ali. It took two days home to recover from two days there.
The problem is that my insurance company won't pay for the kind of chair I need right now (a transportable one). I've got my eye on the KD Smart Chair (and a couple of others like it). What's nice about it is that it folds up (like a stroller), which means I don't need either a new vehicle or massive (and expensive) modifications to our existing one. My insurance company will only pay for a regular electric chair AND if I must use it in the home. Well, I don't have to use it in the home and even if I did, I couldn't - my home is too small and two floors. (As an aside, my occupational therapist really wants me to move and use the chair at home when I need to - inside the house falls, which happen to me on a regular basis, are very dangerous, as are the stairs.) And a regular chair would require a new vehicle or modifications. And I'd have to move to a different, accessible house. Are you beginning to see the level of complications involved in this? So, that mobility solution is on temporary hold until we figure out some way to tackle the problems involved. (This is one of those times where money might not buy happiness, but it's very good at solving certain problems...)
I leave for the summer MFA residency at Western in just a few weeks, and the forearm crutches are going to have to do the job. If the campus were on a flat surface and not at an altitude of almost 8000 feet, I'd feel more confident. The other trick is how the hell does one carry all this stuff, even if I have it? I guess I could wear the braces, clip the cane to the chair, hold the crutches, and then pray it doesn't rain while I'm trying to get from one place to another. :-)
Well, in any event, we've got a large incoming group of fiction students that I'm excited to meet, and I anticipate a very busy summer session. Wherever you are and whatever you're doing, I hope all is going well in your world.
Write on,
Russell
No comments have been added yet.
