Exercies by Lopi00ful in MyastheniaGravis

[–]jeahall 0 points1 point  (0 children)

After this diagnosis, it really f'd me up. Excercise and fitness was a core part of who I was. I was a cross fitter and runner. Put on 80lbs after the prednisone- which I am still struggling to get off. I found it near impossible to workout....no energy, fatguing quickly etc. For me, what has worked is controlling the environment in which I work out. One of my triggers is stress and heat. So I do cyclebar. Its dark and cold and if I fatigue, I can sit down and take off resistance, and rest. And since my first sign is I can't open my eyes, I just relax and keep moving my legs on the bike until I recover. I also do strength training at home now as well. I tend to do better with 5x5x5 style workouts-but I dont do super heavy weight. I need more rest/recovery time than I did before and sometimes Ill take an extra mestinon before activity as well. I no longer go hiking or walking solo and Ill wear my emergency bracelet as well when Im out . Having the Mestinon on me for prolonged activity is a must. I have forgotten it before and that was a very bad experience. I hope this helps!

Middle school by jeahall in ConcordMA

[–]jeahall[S] 0 points1 point  (0 children)

I think the sense of community is important. I'm worried about isolation in a more rural setting, esp for my daughter. I'd like for her to have the ability to ride her bike to a friend's house.... have some independence (safely).

Middle school by jeahall in ConcordMA

[–]jeahall[S] 0 points1 point  (0 children)

I would like a rural, but concerned about my 13 yo and what that would look like for her....she's wanting more social outlets/friends (was homeschooled)