OT September Chit Chat

[Gabriella7]

Thanks Agate, for your thoughts. My husband watches golf as well as football, baseball, and basketball when in season. He has been in front of the TV for 2 days straight and doesn't get tired of sports on TV. I have heard of Stephen Hawking and he has the experts baffled. I have read that he doesn't have the bulbar type of ALS which affects the throat muscles which is what my husband is having the most difficulty with at the moment. I ordered a book from Amazon which was written by a man named Eric entitled "Eric is winning" who has lived with ALS for 17 years and has his own program of managing to live into his 80's. His program is very involved with diet, lots of vitamins, exercise, etc. and is supposed to help anyone with other diseases such as MS.

It is so hard to watch him struggle with his swallowing. I remember that he told me years ago that he had pneumonia as a young child and he was afraid of not being able to breath and dying as a result of a breathing problem. I can't believe that both of us have developed similar diseases altho the myasthenia gravis that I have will not be nearly as serious as ALS unless I also develop a MG "crisis" which is when MG attacks the diaphragm muscles and causes problems with breathing. I believe it is more than a coincident but can't for the life of me figure out what the connection between the two of us could be unless it has a viral cause.

Hoping that we get more answers tomorrow from the neurologist.

Blessings,
Gabriella

[agate]

That's too bad about the 6-month wait to get him into the Mayo Clinic. I hope you've asked to be put on the list to be notified of any earlier openings? I've had good luck with that arrangement sometimes with doctors and clinics but you do have to ask--and maybe keep checking back from time to time.

It may be just very, very bad luck that both you and your husband have been hit with severe neurological disorders. I hope you and he will have better times ahead in spite of the way things are going now.