Multiple Sclerosis is a nasty, rare, incurable disease, but there are lots of nasty rare incurable diseases out there.
As nasty, rare, incurable diseases go, it's one of the better ones. If you must acquire a nasty, rare, incurable disease, MS is one of the best things going!
I should mention that MS comes in many different forms , and the different forms have multiple variations. I'm really only able to address my own variant. YMSMV.
My particular flavor is "Primary Progressive" MS. This type represents about 15% of MS cases. This type tends to appear in older folks (I was pushing 60 when the symptoms started to become noticeable, and 63 when I was finally diagnosed.) My own case only affects me from the waist down, an my neurologist doesn't expect it to spread northward.
I think of it as not so much a "tragedy" as a Really Major Inconvenience.
Anyhoo, rather than focusing on the negative, this article is about the good things about MS:
That's a biggie! Folks with MS seem to have average lifespans within about 5 years of the general population. Compare that with smoking, which appears to shorten average lifespan by 13-14 years!
To quote Michael Flynn:"There's nothing like not being dead to improve a fellow's outlook!"
I don't think this applies to all MS presentations, but in my own case there's no pain as a direct symptom. The only pain I get is when I fall down and hurt myself, and a very occasional cramp that may or may not be MS related.
Another great thing about MS is that it's guilt free and blame free!
Since nobody knows what causes it, nobody thinks it's because you didn't eat your vegtables, or had sex with the wrong person, or took inappropriat drugs, or lived in a place you shouldn't have, or didn't go to the gym as often as you should have!
I miss riding my bicycles. Indeed, that's the worst of it for me, but these days I ride a wonderful Greenspeed recumbent tricycle instead. This thing is soooo cool, super comfortable, and a lot of fun. The sling seat is actually more comfortable than any chair in the house, sort of like a Barcalounger on wheels.
I can't handle hills so well due to the weakness of my legs, but I'm close to some nice bike paths that run along the Charles River. These paths are not the greatest place for riding a bicycle, but they're terrific for tricycles!
Trikes are much more comfortable going slow than bicycles are, and stopping is no hardship, since I don't even have to unclip my feet from the pedals. On a bike, the folks out walking their dogs on the "bike path" are a nuisance and a hazard, but on a recumbent trike, it's great to stop and make friends with the dogs! My face is at about eye level with a medium sized dog, and I like to stop and pet them. I always tell their humans what nice dogs they are. Dogs are really nice creatures when they aren't spooked by bicycles!
On a bicycle I always wore a helmet, but I really don't think it's necessary on the trike. I'm much lower down, so I don't have far to fall even if I found some way to tip the trike over. If I crash into something, it'll be feet first. In fact, I'm much more prone to falling down and bumping my head while trying to walk than I am on the trike! Besides, vitamin D is considered to be especially important for those of us with MS, so letting the sun shine on my bald dome is a Good Thing.
Then there's the matter of those electric scooters. You've probably seen folks zipping around on those, and felt, in the back of your mind, that those actually look like they might be fun.
The fact is, they are! These things are a blast to drive. They're amazingly maneuverable, and all in all great fun. However, if you're not sick, you're not allowed to enjoy this cool mode of transportation.
Folks who see me hobbling around on my canes, or even zipping around on my scooter are universally helpful. They hold doors for me, offer to help me carry stuff, and generally are much nicer to me than they might be to a more nimble person.
Motorists seeing me trying to cross the street always stop for me, whether I'm usng my canes, scooter or tricycle.
Flying has never been so easy! Most airports these days, most of the folks are forced to walk long distances from terminal to terminal, and to wait in interminable lines for the security checkpoints. Not me!
I just arrange ahead for "wheelchair assistance" and a helpful person appears at curbside with a wheelchair for me. They push me wherever I need to go, and then when we get to Security, we go straight to the head of the line!
I've saved the best for last, in true dramatic fashion. You can't imagine how nice it is to have a handicap parking placard or HP license plates. You never have to pay a parking meter, you can park all day in the half-hour parking zones if you want, and when the poor ablebodied schlubs are circling the block looking for a space, there is often a place reserved just for us! This feature alone makes the whole thing almost worthwhile!
Last Updated: by Harriet Fell