Myasthenia Gravis Support Group

Cathi, thank you very much.
During our lives many events happen that cause life changing decision, ie, the loss of a job, obtaining an education, birth of a child, loss of a life partner, or the one we face onset of a uncurable health condition. With MG I feel that my job is to find out as much information as needed to decide how and how much to change my life to give me the best life style that I can.
I have been told that "I am not going to get cured of this, but with medical help I may stop the advance of the MG. Remission seems like a remote hope.
I am not tied to my life style and if I can make changes that would help that is open.
Thanks friends
Will

Hi Will,
Your neuro - must have mispoken, unintentionally.
The effect of heat alone - on people with MG?
Or - MS?
Or - many neurological conditions?
Or - even upon healthy world-class athletes?
This is a well-documented fact, backed by years of research.

It's why there is such a thing: as a cooling-vest.
Popularized and proven, over the years - by MS patients.
And now by MG patients - right here, in our support group.
- Ross
** Head for the mountains, this summer! Acclimate yourself, as you go along. Take several days, to gain the elevation you want. Testing your breathing, as you gain elevation. Find an elevation, and a summertime-temp - that works for you.
You might find? 7500' or 8000' to work for you - just fine.

** I also factor in? How far away, I am? From competent MG care.

** In the past? When headed, for the Southwest mountain ranges? I had to stop and acclimate to elevation, at least twice. Once, around 3,000'. And again, around 7,000 feet. A couple days, each time. After that? I was able to spend 2 weeks, traveling around the Southwest mountains, at 10,000'.

how interesting-I have been battling the heat and what I thought was humdity for the past several days but the dewpoint in this area is in the 50's. This weather totally wears me out and I can't do anything. yesterday I took an hour nap and then slept 12 hours!!!!!

I want to make summer plans for a vacation but am hesitate to do so with the heat!!!!
deb

Just got home from a pool party at out daughters in Houston. Did well while we were in doors but when everyone went out doors I wilted. Didn't swim. Went home after 3 hours.

For the first time in a long time it clouded up and rained this afternoon, temp. dropped to 70 deg. I had already worked early this morning in my shop about 2 hrs with 30 min rest between hrs. felt tired and was afraid to go for another hr. temp dropped it felt like I had started a new day.
Will

Mary, getting in the pool seems to reset my temp by 5-10 deg, and like Will said, "it's a new day." Maybe it would help you too? I haven't tried a cooling vest yet, but made headwraps out of old summer dresses by this pattern. http://mccallpattern.mccall.com/m65...
Very simple and chic too. = ) I made the band area to be a pocket on the inside to hold my ice strips. Our dollar store has the micro-bead sweat bands which are ugly, but they work. I bought several, keep them soaking in a cooler of ice water and change them out every 10-15 min so I can garden or be outside without fear. It's wonderful. I'm cool while my husband is soaking his 3rd shirt in the TN heat and humidity. = )

I've been wearing my cooling vest for the little bit of work I actually can do right now. It helps so much. Today I had to see a patient who does not use their airconditioning. I was cool the whole time thanks to six ice packs pressed against me.
Cathi