Diana Wasserman-Rubin is engaged in the fight of her life.
No, make that the fight for her life.
Parkinson’s Disease isn’t fatal, but it’s life shortening according to medical sources.
Myasthenia Gravis on the other hand, was once fatal with an average lifespan of 36 months from diagnosis.
It isn’t that way any longer, thanks to therapies and drugs mostly found by the Muscular Dystrophy Association. They have yet to beat Parkinson’s.
Today some victims of MG go into spontaneous remission, some into treatment driven remission, and some live with controlled symptoms for life.
I’m in the second class although most who go into therapeutic remission do so within two years.
It took me eight years. But then I’m still using immune suppression drugs to keep the disease at bay. Eventually those will be tapered off and hopefully MG won’t return.
Many of the symptoms of MG are similar to Parkinson’s Disease.
Parkinson’s syndrome can be treated by Dopamine medications such as Levodopa that replace the essential neurotransmitters in the brain. Diana needs a pill to function in a semblance of normalcy.
There are other drugs she needs to take, but they’re not relevant to this article.
She needs the pill to stand and walk, to do something as simple as a smile as her muscles aren’t being given the commands through natural dopamine.
But unlike other meds, neurotransmitter meds don’t build up an effect within the body. They last three, maybe four hours and wear off, requiring a fresh dosage or function is lost once again.
In Myasthenia, many of the same things happen. Only the neurotransmitter affected is Acetocholine which works in the body at the nerve muscle junctions rather than the brain.
There’s little difference when the commands don’t get to muscles whether from inside the brain or at the motor nerve to muscle junctions themselves.
Think of it as interruption of the signal on one end of a cable or the other.
And so, like Diana, I needed a pill to get up and walk, chew food, smile, and speak.
So let me explain what it feels like…
Walking is difficult to say the least. Think of walking in a children’s swimming pool filled knee deep with molasses.
It’s called bradykinesia, a slow, shuffling walk with unsteady gait. If you watched the tape of Diana shuffling out of the courthouse when Richard was sentenced, it was very visible.
I had it, too. While at Broward Days, it took me a full 20 minutes to walk from Clyde’s in Tallahassee to the lobby of the Doubletree hotel only a block away.
To keep at least a little humor in an otherwise debilitating situation, I always referred to it as the Tim Conway “old man” walk.
She likely has problems chewing as did I.
Try eating French Toast (or anything else for that matter) when it feels more like chewing rubber.
Diana’s speech is slurred, and has been since at least 2007. So was mine under onslaught of MG.
There were times that I had to carefully control my speech to keep from slurring my words. I had to consciously form each and every word as though I were teaching pronunciation to a drama student.
Parkinson’s also brings on sleep disturbances. Night and day. MG does, too.
Unlike Diana, I needed my magic pill to breathe. You have no idea of what it’s like to be unable to take in a full breath. Without the pill, the choice would either be a respirator, or stop breathing entirely.
More than once, I had to sleep sitting up since it was easier to breathe even with the magic pill.
There’s more, but I think you get the point.
There was a difference between Diana’s onset and mine.
Her symptoms developed slowly over several years and will continue to develop. Mine took six weeks from start to full potentially fatal symptoms.
Comparatively, Diana will continue down the long slope while my symptoms of MG are gone at least for now.
I’m not out of the woods, so to speak since as I mentioned earlier, I still take immune suppressants to keep the disease at bay. When the doctors tell me it’s time to back off that drug to test the remission, I’ve got a new supply of the magic pill handy just in case.
But the MG treatments have caused other problems requiring other meds, other therapies including a pacemaker and defibrillator.
They will handicap me for the rest of my life.
So I figuratively sit above the pool of water in a dunk tank waiting for somebody to throw the ball at the target and dunk the former school board member.
I’ve already been dunked once this year.