I often wonder what in the world I have to blog about, and then I make a comment on someone else's blog and think to myself, "That would make a good post."
Thursday night I attended a support group for patients and caregivers of people with myasthenia gravis. I was diagnosed with MG back in 1990 and was quite sick for a while. After a few years with the right medication, it has been under good control. (Most of the time) MG is an auto-immune neuro-muscular illness. It isn't terminal, neither is it a disease in which the muscles waste away.
When one has MG, fatigue causes certain muscle groups not to respond correctly. One of the noticeable symptoms of MG is droopy eyelids. Other symptoms are difficulty chewing and swallowing, double vision, slurred speech, breathing difficulties, and weakness in the limbs. Any or all of these symptoms can appear.
After all these years, I've learned to live with it. Right now, my main problems are in swallowing and occasionally by evening I have difficulty speaking well. Often it is noticeable only to me, but it is there nonetheless. It really isn't worth mentioning.
However, the other evening, there was a young couple there at the support group. The husband was diagnosed in January after experiencing several symptoms. His dear wife is expecting a baby this week. I am not sure if it is their first child or not. My heart just went out to them. He is so concerned about not being able to help around the house, and then, of course, there is his job. He was very soft spoken, and I didn't get exactly what he does, but it appears that it is some type of work where he can take breaks to rest a bit.
We have a wonderful doctor who attends each meeting, and he reminded this young man of the ADA and the fact that businesses have to accomodate disabilities. I'm hoping for the best for this couple. I wanted to embrace them and assure them that everything was going to be all right. And I'm sure it will be for them, but I know they must be scared to death, not knowing exactly what they're dealing with.
On a lighter note, there was one of those feel good articles in our newspaper that is just too good not to mention. A St. Bernard/Pyrennees mix was found on the streets by animal service and taken to the humane society. They cleaned him up, checked him out, and waited the necessary time for an owner to come claim him.
When no one did, they knew they would have to find a home for him. They received a call from a lady at an assisted-living facility who wanted to know if they had a big dog. It seems they were looking for one to their place, a dog who would be tall enough so that the folks in wheelchairs could put him easily. It seems to be a match made in heaven. What a nice valentine for this dog and the folks at the facility. Read about Liam here.
13 comments:
I haven't heard of myasthenia gravis before so that is good information. I'm sorry, though, to read you suffer from it, Beverly.
And, that's a great story about the big dog. I love it when everything works out in the end.
Upon reading this, I wish you did not have to deal with MG. Thankfully it is only when you are tired...I guess when you get to be our age, we have one thing or another. My clotting disorder is under control with medicine.
I loved the photo of Liam, he has a sweet look.
I may call you one day...I smiled when I got your e-mail...
I haven't heard of MG either.
My daughters were both born with a dislocated hip, things were scary at first, but as we went to hospitals and doctors we saw and realized that their problems weren't so bad and they both ended up fine. But I still recall how hard it was on Lovely Wife and me because we were overwhelmed and were frightened that the worst would happen.
Hopefully as time goes on they'll begin to see that, like you, there's lots of life yet to live.
Hello Beverly
I stopped by your website after you made such a lovely comment on my blog about my battle with Cystic Fibrosis. I wanted to thank you for reading.
Your granddaughter Ella is absolutely adorable! I hope she has a very healthy, long and fun life!
I am very surprised to find that you have MG. My very dear aunt Donlyn has MG too. What a strange coincidence.
I wish you (and little Ella and your family) good health!
Take care,
Aspen
(Salty and Sweet)
I had heard of MG but didn't know the symptoms of it. Thanks for the enlightenment and I am so glad yours is under control. Great story about the dog too.
Beverly, you didn't tell me that you have MG, and you are right, I'd never have known it. It is nice for you to go to that group, as you can be of help to the younger ones.
Anytime we are given a diagnosis of something I think it makes us stop and swallow hard...and go forth...my husband was recently diagnosed with Parkisonism. It was a really scary thing. He had had such minor symptoms at first and we both chalked it up to 'old age' creeping up. When the muscles in his hand had almost stopped working we both felt it was more than just 'age'. So after some time now with a neurologist and sinemet we know that he is suffering from a form of Parksonism. Thankfully he doesn't have tremors, but he has most of the other symptoms. He is almost to retirement and his only worry has been he wouldn't be healthy enough to enjoy living...thankfully the medication is doing well and he has regained some of his old vigor. But I can't help but worry a bit and wonder what the future holds...
Add my thanks for the information about MG. Had heard of it, but was otherwise ignorant.
What a great dawg story! A boon for him, and for the folks where he's now welcomed.
Yes, had heard of MG before, but never knew the symptoms. It's great that it can be controlled with meds.
Love your Ella photos; adorable!
I have one eye that does not open in the morning, every morning, for about 10 minutes, and tends to close when I am tired in the evening. After visiting several drs. I have been told that it most likely is ocular MG. The good news is my symptoms have not gotten any worse and for most of the day I am completely symptom free. I was also told that if my symptoms do not progress after two years the chance of it going systemic are much less. It has been two years.. so I am remaining positive about this.
Scary stuff though.. and my heart goes out to the young man in your support group and his family. He will be in my prayers.
I absolutely LOVED the story of Liam. A win win situation. :-)
I've always taken comfort in support groups and their ability to help those just entering a world they never thought they'd know. As my father has navigated his own journey through cardiac disease, we've been incalculably helped by so many generous souls.
Thank you for sharing this intensely personal experience, Beverly.
I've never heard of tghis but it sounds like you manage it well. I have fibromyalgia and Chronic fatigue which I find pretty difficult sometimes together with diabetes and ..joint problems in my feet etc. Oh well, it can always be worse!
I know exactly what you're talking about when you say, "What in the world do I have to blog about." And more than a few of my posts were insired by fellow blogger's postings.
And it's funny that on days like today I can think of a million things to write about, knowing I won't get to most of them. And tomorrow I might not be able to think of anything. It's funny that way isn't it.
I suppose I'm digressing from your topic.
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