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...
Annette
Wellness,
It was almost 90 degrees here and I had to take a ride in a car with no air. I put two of those cooling packs used for lunches on my chest and sipped cold ice water. I was as cool as a cucumber. I have even held ice cubes in baggies on my writs as I walked in the heat one day. Whatever works! :-)
Stay cool and congrats to your son. This is SO exciting!
(You can both work on heat strategies together!)
A cooling vest is a great idea. (Baggies from hotel ice machine?)
Tropic-weight clothing. Living in a snowbelt region, same as you: anytime I need a tropical weave, I have to order online.
When I travel to sunny FLA with family? I always rent an electric wheelchair, just to conserve those spoons. (This might be really especially handy, getting around the venue. Many hotels already have connections with the local wheelchair companies.)
Stay in the shade, if possible. (Also stay in the A/C, as much as possible.) This not only helps with the heat, but saves your skin too. (Every other Rx I have, warns: Avoid Prolonged Exposure To Sunlight.)
Battery-powered personal fans: I bet there will be hundreds of people using these.
Has the schedule been determined yet? Lots of summertime sunbelt events - start very early, or take place in the evening (everything helps).
(Sidenote: my nephew held a Maine 8th-grade AAU pole vault record, for 38 years! But he never had to compete, outside of New England.) - Ross
Baboolily -- I heard the "i'm melting" as I read your entry and this is what I am afraid of.
As for sunscreen, alsways with me. Had melanoma before MG and now have squamish cell cancer with open wound on my leg. I do wrap it in various colors of coban to keep it out of the sun.
I posted a new picture of Chase vaulting - it was taken in April in Butte. Yes that is snow in the rockles. He won that day. It was my birthday. I appreciate your support!!
Barb
I had a conference a couple weeks ago. I felt myself getting weak since I didn't sleep well the night before and I walked to much getting in the center. Anyway I ended up having to go home and missing half of the conference.
If I had to do it over I would have gone to someone's close hotel room and rested. I also wouldn't have wasted energy on walking when I could have taken a cab.
Big events take too much out of me.
Now I know to prepare better since this is the second conference I had to leave early cause I crash. Last time my crash was severe flu like and this time my warning was trouble swallowing and then severely flu like.
Probably just sick of this disease. . Which I am getting sick of,
If I was you I would stay in ac for everything and only go to important event.
That way you will make it.
I went out in my boat yesterday and started to feel my breathing.
All I could think of....was....how will I get help out here.
When I got home I realized it was most likely the sun .....my friend said,,,,oh I could have driven you home....I didn't
Have the heart to say.....I really don't think I would have made it home without breathing.
Oh well
The next conference or event I go to I am going to find out where the closest place is that I could lay down for an hour or so
I think that would keep me from having to leave completely.
It isn't fun for anyone when we have to leave completely.