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Late on-set Multiple Sclerosis

Multiple Sclerosis (MS) | Last Active: 2 days ago | Replies (14)

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Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

My wife has had MS for a number of years being diagnosed over perhaps a five year span. She fights it every day, doing what she can when she can. If she can climb a hill, she will try. If she can't get out of the car, then she won't try. MS is strange in that it affects everyone differently, naturally because different parts of the brain or brain stem are damaged in all MS patients. It seems she can work her way around something if something is misfiring or not working. Ten minutes later all is more or less fine. She has trouble regulating body temperature, cannot be outside in the heat or she goes weak within minutes. There are times she cannot talk or she gets words mixed up. We laugh else we would certainly cry.
It is very hard to explain MS to someone who doesn't have MS. My wife says "you don't get it until you get it." You understand what is going on but people say you "look" fine. It's OK for people to be stupid I guess.
You get up in the morning with a pocket half full of pennies. Every thing you do costs you pennies. you brush your teeth, pennies. You get dressed, pennies. You walk outside to the mail box, pennies. Eventually you run out of pennies and that's it for the day. Maybe a nap at ten in the morning might get you a couple of pennies back but you never have enough pennies to get you through a normal day. You are exhausted, weak, worn out, but hey, you look fine. It's a hard adjustment. Fight every chance you get. Figure out ways to do normal things. If you need a wheelchair, maybe you just need one for an hour or two when you can get back up and walk again.
My wife has never given up. She cannot work a normal job because she never knows when the failure light will come on. But she has lived twenty years like this, fighting almost every day, taking trips, working the garden before the sun comes up, hugging the grocery cart for balance whilst shopping, crying when she wants to. It's all part of MS. No one enjoys this disease. No one wants this disease. As she says, "Life is what happens when you are making other plans."
Do the best you can. Reach out any time you need to. Life is never fair but tough people make it work.
Sorry to ramble on. You can do this.

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Replies to "My wife has had MS for a number of years being diagnosed over perhaps a five..."

@hrhwilliam hi William, my name is Teresa. I also like that view of a day is like pennies I run out of pennies as soon as I get out of bed in the morning. I now have advanced medicine and I've been confined to a wheelchair for years, I live in assisted living now and I'm on comfort care. I do what I can when I can. I miss being able to go for a walk, sync my feet into the sand at the beach, put my feet in the water in a stream stand up tall and touch the leaves in a tree, but I can go to the beach with my brothers and they can take me to the beach and put me in a chair and let me listen to the ocean sounds and I can watch the ocean come in and out and be mesmerized by the sound and be grateful that my children my two that I have still here are grown and I have grandchildren so tell your wife I'll pray for her and I'll pray for the people here, but say a prayer for me too. God bless everybody.