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...
I know I have been around in a while. Been on my own "roller coaster". I have decided NOT to have the full sternotomy thymectomy. My neuro and I have been going back and forth on this for a while and I am not sure what he will say when I give him my final answer. For sure he won't be happy.
I am now going through a medical board with the military and should hear something about retirement in the next six months or so. Thankfully the Reserve is part time and I currently work from home for my civilian job.
As we all know MG has it's ups and downs. Just prior to vacation it was hot, I was tired and had continued to push. And my legs started to fail while we were out shopping. Shari had to go and get a wheel chair for me and push me around. Far more frustrating for me than her. She did however let it be known that we could not go on vacation without a plan and some sort of a support device. I did finally suck it up (tears were involved) and get a cane. Then I found a local guy that finds and repairs scooters. I bought a used one at less than 1/4 of the new price. It runs like new and was actually a life saver. There were days that I was exhausted even when I used the scooter. There was still frustration because it did upset some of my family seeing me on it or just knowing I have it. Mainly because I think it upsets them seeing me getting sicker.
So bottom line is that I am trying to hang on, have fun with my "scootie" and just do what I can. The fall is here and that means cooler weather for us and maybe feeling a little better!
Kimber
I am now going through a medical board with the military and should hear something about retirement in the next six months or so. Thankfully the Reserve is part time and I currently work from home for my civilian job.
As we all know MG has it's ups and downs. Just prior to vacation it was hot, I was tired and had continued to push. And my legs started to fail while we were out shopping. Shari had to go and get a wheel chair for me and push me around. Far more frustrating for me than her. She did however let it be known that we could not go on vacation without a plan and some sort of a support device. I did finally suck it up (tears were involved) and get a cane. Then I found a local guy that finds and repairs scooters. I bought a used one at less than 1/4 of the new price. It runs like new and was actually a life saver. There were days that I was exhausted even when I used the scooter. There was still frustration because it did upset some of my family seeing me on it or just knowing I have it. Mainly because I think it upsets them seeing me getting sicker.
So bottom line is that I am trying to hang on, have fun with my "scootie" and just do what I can. The fall is here and that means cooler weather for us and maybe feeling a little better!
Kimber
Feeling a little better is a good sign. Just hope that feeling continues and will soon be a positive "Doing much better".
Sorry your condition got to the point you need a scooter but good for you in finding one at a good cost.
Hope the military retirement and your next doctor's appointment goes well.
Take care.
Bruce
I was out pulling weeds and picking up black walnut hulls using my hiking stick today because I have jelly legs. Probably not a good idea to have been at the butterfly garden at all after a couple of days of needing lots of rest, but understand your frustration. I have a couple of Leki treking poles that are easy to adjust.
I am sorry you are having increasing problems and are going to make your neuro unhappy which does not decrease your stress, but glad you have good support at home. As they say, don't be a stranger! b.
Sure good to hear from you again.
Sorry your having such a hard time.
Making the choice to use walking aids after being so fit is really tough but Im glad to hear you are allowing your self to use them if it means allowing you to continue participaiting in life:)
Please keep in touch when you can.
Jeannie
TERRY
Kimber