Dr. Suess

"And will you succeed? Yes indeed! Yes indeed! Ninety Eight and Three Quarters guarenteed!"

Thursday, June 15, 2006

Can you do that?

Pearls and Dreams

That was a question posed to me by my husband. Not asking if I was capable, but allowed to. Medical science and it's advice given to patients changes so frequently, it is hard for patients to keep up. For patients families, it's even harder to keep up.

We were on the phone after I'd just gotten back from a mile walk with Wanda. Yes, I'm allowed to do that. He knows I'm allowed to do the PT stuff ..but wasn't so sure about the walking.

It wasn't all that long ago, or so it seems to him, that I was told "no exercise". REST ... the more rest the better ... was the advice given to myasthenics.

Each Myasthenic is different. But, one thing remains ... the more a myasthenic uses their muscles, the weaker the muscle gets. The more rest, the stronger the muscle was. Resting improving the strength ... will actually get you tested for Myasthenia Gravis.
So, it stood to reason ... exercise is bad.

For a long time, MG had a fatality rate that wasn't overly positive. The statistics change depending on who's literature you read and what they are promoting. Suffice it to say ...if your breathing muscles were compromised, you had serious trouble. Then, treatments were discovered ..and while lifestyles were seriously inflicted, life spans were helped tremendously.

So, people started to live beyond 5 years with MG. But, they were told to be sedentary. Which, with the treatments available, wasn't that big of a deal. MG wasn't going to allow much beyond getting dressed in the morning, reading for a few minutes and getting to an occasional doctor appointment. Life caused major fatigue.

Then ...treatment improved the life of a myasthenic.

Exericse causes the muscle to fatigue ... increases the likelihood of myasthenic crisis. REST REST REST!!! Even physical therapy for injuries was severely frowned on.

And a phenomenon started to happen that no one expected. As treatments improved ... myasthenics started to develop secondary issues ... chronic pain, osteo arthritis and chronic tendonitis. WHOOPS!!

A few years ago, some research started showing that mild exercise, supervised and controlled improved the pain levels of the myasthenic. It also didn't increase the number of Myasthenic crisis'.

Ok, so a few brave neurologists started to tell their patients ... exercise. Pretty soon, it became the standard advice. Get some movement. Use your brain, don't fatigue yourself, if you can't breath ... STOP. Do NOT get short of breath.

Then some remarkable news came out ... those who did exercise ... had FEWER crisis' than those who didn't.

The degree of fatigue doesn't seem to be helped by the exercise (in fact, it can be made much worse rather easily). But the strength level ... and the over all health is improved.

In the 14 years that I've been diagnosed with Myasthenia Gravis .. new drugs have come out. Mestinon has gone Generic, but the generic is more expensive than Mestinon's brandname was when I was diagnosed ;).

Cellcept has been developed to replace Imuran. Still risky at best ..but not nearly so as Imuran ..and in my body, far more effective.

Plasmapherisis, IVIG, and other treatments being used with more knowledge and better results because they are better targeted toward the patients that will best be helped by them.

Exercise that was once forbidden, is now not only allowed, but encouraged ...and seen as a benefit to the disease.

Amazing how far medical science has come in just 14 years. Maybe in 14 more ...they will have found a cure.


  1. So many parallels to Multiple Sclerosis...

    I was told not to exercise, because it would heat up the body, and subject me to possible traumatic injury.

    I gave up on that advice a few years ago, when I became GrammaDog. She needed her walks, so I started. Then the doctor told me that I clearly wasn't doing any harm. He indicated that I was writing my own book. Later he suggested weight training for the upper body. Well, we'll see.

    Go at a comfortable pace and enjoy your walks. That is what quality of life is all about.

    Love you, Pearlie.

  2. Science has been moving at an exponentially faster rate every year than the previous year.

    Hopefully it won't be 14 years.

    Have a good evening.


  3. I am glad we can walk together. I believe that some day they will find a cure if not something that
    prevents flares. You also are friens with the greatest phystcian ever.


  4. Great post and very imformative for people like me who don't know much of anything:) Someday they will find something to make it even better!!!!

  5. heres hoping to the cure and wishing we could join you on your walks they sound pretty good helathy and good comany ta boot ;)

  6. Pk ... thank you for sharing that!

    What a strange path we sometimes travel when our lives are filled with thoughts like: "Can you do that?"

    Tons of love, dear heart!

  7. I found my way here from Grand Rounds. It's *very* nice to hear about the improvements in care. Last year both my aunt and my father in law were dignosed with MG. I'd never even heard of it!

    Thanks for the general information. It's nice to hear about it in a more personal way than your average medical site.