I have lived with Dystonia for over 50 years.
It has not been a fun ride.
The twisting of muscles in my limbs and the spasms are not easy things to deal with. I have had 2 brain surgeries: the first in 1960 when Dystonia was extremely rare . This surgery eased the twisting of muscles in my left leg. The toes were once again flexible and I could walk on that foot for the first time in over a year.
But the disease progressed and attacked the left side of my brain so I had to have a second surgery.
This time the surgery in 1966 was not as efficacious as the first.
This time both my arm and leg were involved with annoying jerks and spasms. The surgery eliminated the jerks in my leg, but not my arm.
To this day I have an arm that jerks around especially in times of stress or nervousness. And I have to be extremely careful not to get too tired, which some days is impossible.
Nonetheless, I live with Dystonia with Gods' help, as best as I can.
I always felt so alone with this disease because when it first manifested itself it was extremely rare.
Today, however, it is more widespread.
This last year I learned of Rogers Hartmann's existence and began emailing her.
To my great surprise she returned my email and we began to email each other. We even got to meet each other which is no small task as we live on opposite coasts.
Rogers is a delightful, intelligent and charming lady. While we both have different forms of this disease and different treatments we share a common bond - one that I pray may be "cured."
Even so, I am thrilled that Rogers and I became friends.
Rogers , you are fantastic in my book!
(The picture above is near where we met on the east coast)
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Margo, your warmth and loving spirit came through your words -- touching and beautiful. I might say, your courage to go through not one but two brain surgeries is astounding and especially in the sixties. I am very sorry to hear you have suffered from Dystonia for 50 years and that this disease is only now being made more public. I am quite fortunate in that I do not suffer from Dystonia, and yet, like so many, I greatly understand that feeling of being “alone” as I believe we all feel this for one reason or another. Margo, your honesty is greatly appreciated by many.
ReplyDeleteWhat I love about this blog is that it brings so many people together… to reach out to one another in the search for not only a ‘cure’ but also for the common bond of humanity, encouragement, and friendship. Margo, your friendship with Rogers does not surprise me… fantastic women tend to magnetically find each other… and I bet the two of you left some gorgeous footprints in that sand. God Bless You. :-)