Myasthenia Gravis Support Group

I have a husband that has Myasthenia....It leaves me frightened for the future. He is only 50 years old. The is a bull of a man with an intense work ethic. His pride and ego and self esteem was centered around his stregth. He was always stronger than most and even as a teenager was the football/hockey type man.

He has damages to both his knee and elbow, foot ankle etc. from those football days. He has always been involved with building, cementing, stonework, etc. He is a plasterer by trade at this point in his life.

The myasthenia is kicking his a--.

Slowly, thank god! but it seems surely that it is progressing.

We have three (somewhat old) houses that need work all the time.

I also have a home business that I used to depend on his help to make a profit.

I do not know how to handle it. If I baby him and don't give him work to do around the house he resents it. He even has gone to his moms and scraped and painted a few rooms after work when I was trying to let him rest.

I am asking you to help me be a better friend/wife to Sal. What is a good way to handle the sensible amount of energy he should be using?

His doctor says he will know when it is enough...I don't believe he does. He was always someone who had to work with pain, he had to function while exhausted, how is he supposed to know the limitations that are safe for this Mestinon induced muscle action??????

Hi Dotti-

I really do applaud our MG caregivers - it really is tough for - and sometimes us myasenthics forget it! I am sad to say that I believe that my diagnosis may have caused my husband a minor breakdown - i think that it reminded him of a time when i was going through some other intense auto immune problems (i'm wondering now if i was in crises then?).

anyways - you just have be supportive of him. when was sal diagnosed? it takes awhile to figure things out and adjust. i know that it's been tough for me and i was diagnosed almost three years ago and have a mild case. believe it or not, it's pretty emotionally impairing for the myasenthic and caregivers.

hope this helps!

leah

Hello Dotti,

You are asking us to tell you how to be a better friend to your husband? Girl, you are already there!

Leah said it takes a while to figure things out--it really does take time! Most men do not handle these difficulties as well as women. It goes back to cavemen...

I can appreciate how difficult it is to be a caregiver. You will need to let him find his own way, make his own choices, and make his own mistakes; that's a very difficult thing to watch. I know you will be there for him when he realizes he can't keep going at his current pace. When he gets angry and frustated, just listen to him. He is fighting to live his life--to get his life back. Your doctor is right. Your husband will get there...eventually.

Welcome!

Hi, My relationship started when I was first crashing, he, my now husband, stuck with me even though my one eye turned to the back of my head, I put on a eye patch to cover that eye, he stuck with me, till a correct diagnosis was given, then they sent me to another city, right off our island, he visited every weekend, I spent 6 months there, had a thymectomy, boy this was a test, what would he get back, well I was 35 then, now at 51, he has a very different wife, and at the age of 39 they had to research having a baby, we did, premature by 2 months, but healthy, he now a very smart 12 year old.. My husband/best friend is very similar to your husband, would hate to see this happen to him. As we have a few houses, I have learnt when to go and when to rest. He will even figure out when his mestinon has worn off, I use a whistle trick, if I can I,m not too bad. Since my husband and I meet at a Nautilus Club, we were regulars, we have a gym in bsmt. Your muscles still work but not as long, transfer to different muscle groups during workout, mix it up, its hard to figure out, talk to him. hope this helps

It's hard when your body can't keep up with your mind at times - that is one of my personal struggles. another is that i trick myself into feeling good and that over do things and pay for it later.

We just have to remember our nickels/spoons/whatever you want to call it and make decisions with our disease in mind.

Kerry - Thanks for sharing!

Leah

It was like you took the words right out of My mouth. I was diagnosed at 14 now Im 38. And I cried when I seen what you wrote. I often think what I would have been had I not had this disease. Do you ever wonder these things.

Krissy

Wow! reading your post has also opened My eyes to a lot. I want to work out but I end up working out and owing yet another gym for time I will never spend there. Now I know to switch between muscles. Thank you

Krissy