Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I wanted to post something besides the obituary which must have been as unwanted and abrupt for others as for me.
Curt had a "silent" heart attack sometime in the past. He was having trouble getting up the incline to his car after work. He rode a motorcycle home from Tennessee to New York last April, and slept on the ground in 40 degree weather early May. He got pneumonia, and attributed his coughing to allergies. He also got hospital acquired pneumonia when he was admitted, and that was the state he was in when they discovered the lymphoma.
He would have something to say about all that if it were one of us! It might not be too complimentary, but it would be for our own good. I did have a few things to say about the unexplained fatigue and attributing problems to age, but they were complimentary, if pointed, and Gwyn did wonder why he was tapering the prednisone, not the Imuran.
In Curt's tradition and in tribute here are a few things to take to heart:
MG is a serious disease and not to be taken lightly at any time.
When you have new symptoms or symptoms don't clear as expected you need to find out why.
As we well know, blood tests don't tell the whole story, his were "perfect." (He did have anemia attributed to the Imuran.)
Curt's MG was severe, but he sure enjoyed his motorcycle when he had to give up his bicycle and hiking boots.
In taking care, don't be discouraged and try to find the care you need, to live the kind of life you want to lead. Don't give up. We're tough, we don't go down easily!
Curt, if you find any typos or grammatical errors, you can attribute them to tears, not double vision this time.
Love,
b.
Curt had a "silent" heart attack sometime in the past. He was having trouble getting up the incline to his car after work. He rode a motorcycle home from Tennessee to New York last April, and slept on the ground in 40 degree weather early May. He got pneumonia, and attributed his coughing to allergies. He also got hospital acquired pneumonia when he was admitted, and that was the state he was in when they discovered the lymphoma.
He would have something to say about all that if it were one of us! It might not be too complimentary, but it would be for our own good. I did have a few things to say about the unexplained fatigue and attributing problems to age, but they were complimentary, if pointed, and Gwyn did wonder why he was tapering the prednisone, not the Imuran.
In Curt's tradition and in tribute here are a few things to take to heart:
MG is a serious disease and not to be taken lightly at any time.
When you have new symptoms or symptoms don't clear as expected you need to find out why.
As we well know, blood tests don't tell the whole story, his were "perfect." (He did have anemia attributed to the Imuran.)
Curt's MG was severe, but he sure enjoyed his motorcycle when he had to give up his bicycle and hiking boots.
In taking care, don't be discouraged and try to find the care you need, to live the kind of life you want to lead. Don't give up. We're tough, we don't go down easily!
Curt, if you find any typos or grammatical errors, you can attribute them to tears, not double vision this time.
Love,
b.
Perfect!!
I am certain that we all learned something from him... but I will take his word on the crock-pot pig's feet and sauerkraut!
Love, Becca
Thanks for all you do here and for letting us know about Curt and for this post.
Love, Cathy
Tough love is necessary. I know that is one the biggest attitubes Curt had.
It is what I love about this group. Everyone cares for each other even when it takes tough love sometimes to make someone recogizie that they are in denial and need help.
We all need to take to heart what B said. When indoubt you can always post and know that you will get honest answers, even if it sometimes my be some tough love.
Wishing everyone the best and be true to yourself.
Bruce
I think one way to remember Curt is for us to try to think of some way that we could take more responsibility for taking care of ourselves, and get that in line this weekend.
Love,
TJ
Amen, Everyone.
- Ross
Ann
This was such a great post, I want to make sure everyone gets an opportunity to see it!
Thank you,bweeds.
This site,DS,has given encouragement,too to move forward.I have copy and paste some of your entries for his children.You continue to give me solace.
Thank you.
YOurs,
Elizabeth
--Kerry