[Sculptor44]

Losing ability to talk. This Is very difficult to post. It terrifies me. My ENT is one of the doctors who said It is myasthenia Gravis. Of course he said.. And he said in a frustrated way who is your neurologist. And what is being done! Brain a lot worse today so gotta go. I can’t remember if I should sign off a certain way.

[Sculptor44]

This is so scary. When I do talk now I pay for it so by my chest being weaker so going to bed harder. And it’s not just weaker. It gets stiff. I miss my grandkids so so much. Sculptor44

[Lara]

Hi Sculptor,
I don't have MG but read your posts here today. It doesn't sound as if you're feeling much better since your November post, is that right?
Do you have support at home there to help you?
When do you see your doctor next? If you're feeling worse or no better then it would be important I would think to get an appointment even if it's just your local GP.
I hope you can get to see your grand children soon. I am just guessing that that you are isolated because of Covid restrictions.
Let us know how you're doing and again, I hope you have support there at home or at least a phone call away.

[Sculptor44]

I turn 70 tomorrow. My health has declined further. But I meet one of the 2 required criteria for being still in my apartment. First is walking well enough to get to toilet and moving around . Have tripod cane and walker if necessary. 2nd need to be breathing well enough to move around and lay for sleep. If one of those get close to failure I go to ER. Thank Heaven since visit in August this has worked resulting a steroid shot of solumedrol 125. The 2nd time in December I even got someone who knew Myasthenia well enough to be very supportive and want to monitor my breathing for 24 hours. Who knew Covid would help me get somewhat better treatment tho I don’t have it. My oldest daughter is 50 and is primary help tho not medical person. But she is a project manager for big company so has other skills. Doesn’t want to help with shower tho and boy I need one! We meant with my Caseworker for my Elderly voucher by phone to do a final push on getting new homecare in place as my last care giver visit is the 15th. Of course my declining breathing and chest issue out weighs all of the other stuff. I know I should do letters of goodbye to my family. There is a new issue in my chest besides Myasthenia. Been there at least July last year. They said at ER my CT was ok but they looked for blood clot. I want that scan to go to the pulmonologist with other new blood work and poor oxygen at to my Mayo Clinic pulmonologist. Him I trust but been too difficult to get there. Apologize for the length. Got a lot pent up. Sculptor44

[Sculptor44]

This part of my health is getting a lot harder to handle. Harder to stand. Covid has magnified the isolation I already was dealing with.I checked in with my Brain Injury Association person this week. She is is very kind. When things get dark for me on occasion my brain gets theses blips of dark images. Monday I had tried a new homecare person for day 2 and it really had me raw. It has been years since I had one that actually scared me. So for Pulmo on Wednesday I wasn’t in the best place. My head was mush after the pulmo. All his negativity was too much. My daughter hasn’t been as available cause of school starting this week for her kids so I hope We get caught up this weekend on filling the refrigerator. Sculptor 44