The loss of my normal happened extraordinarily slowly, which in combination with the following:

1) a doctor who saw negative tests as a good enough reason for a psychosomatic diagnosis
2) my own expectations of someone my age
3) my own insecurity
4) gradual progression

....all allowed me to put something abnormal down to being normal on a regular basis. In addition I was so preoccupied with devising constantly evolving new physical strategizing techniques that I forgot to actually look at what was and wasnīt normal at the time. I guess more dramatic onsets and a clear diagnosis would hit home harder and faster.

By my worst peak I had made changes to my program which included conducting my students less and less, and when I did, it was from a seated position in my chair with my elbows literally pressed into my stomach! I was not able to play piano for two years either. That was not normal and nor did I know if I would ever be able to do those things again. However, the third year motor skills gradually began returning but then I was too afraid to start playing again in case it was that that was causing the weakness. Later when food started to get stuck in the esophagus and saliva had started going down the wrong way I realized that my muscular weakness had nothing whatsoever to do with my piano playing!


3 things really helped me at that time were.....

Number one:
A good friend at work who by simply being a little observant knew more than my previous doctor about MG.
She was of the greatest support whilst my ordinaryīnormalī was slipping through my fingers, and was also there when things started to get better a few years later, as surprisingly I needed support then too.

Number two:
A husband who didnīt understand the reasons but knew he had to take more than his fair share for a number of years. It was a hard period for all with survival instincts at work and discussions to a minimum in our house. I will always be grateful to my husband for doing and not questioning.

Number three:
A couple of employers who stood by me all the way, to whom I am eternally grateful. They understood without any hesitation whatsoever that my mind was quite alert but my body was not.

Number four (came later):
Reading about other peopleīs experience with normal/abnormal and getting advice on forums really helped to both find and cope with my place in the constantly shifting myasthenic spectrum.


I think that had my symptoms continued further in the same predictable progressive pattern they had started with, I would most definitely have looked for professional help to deal with them. MG sounds like a mean disease – one minute itīs nice, the next itīs nasty. The total impact of those fluctuations on your own mental and physical well being plus the confusing effect it has on our loved ones and others around us is enough to warrant having a really great friend by your side and/or some regular professional help for all involved.

The good thing is, you do see more and more people writing about their remissions on various forums. Those are not impossible.

In the meanwhile my absolute number one choice (after finding a good neuro & treatment plan) during a time like this is spending time with a good consistent dependable best friend/partner/counsellor in life whilst trying to tame the wild fluctuations of an unpredictable myasthenic beast and keep itīs negative effects on mental and emotional equilibrium at bay.


Anacrusis