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Denver’s MG Poster Girl
B. Jones caregiver
G. Jones
My wife’s MG support group calls her their poster girl. It just shows how helpful a support group can be and ours cares for each member and their care giver.
The official diagnosis of MG by her internist in 1993 was correct but we had difficulty locating a neurologist who could prescribe a medication regime that would benefit her.
Prednisone was first prescribed. While she was adjusting to it we made a trip to see our son in Japan. All of his friends showed every courtesy and concern to lessen any strain. But climbing stairways from the subway and getting on and off trains was a constant chore for my wife.
The report of this experience to her doctor, plus the fact that prednisone caused elevated pressure in her eyes, resulted in a change of medication to Mestinon. Unfortunately, Mestinon seemed to have no effect. But wishful thinking kept her on this prescription far to long. Her symptoms were poor speech (no one could understand her), inability to chew or swallow and general fatigue. She became thin (95 lbs.) and slept a lot. Social functions were a trial to be endured.
While I urged her to report her symptoms more fully to the doctor we both wondered if we just had to put up with the situation. That’s when the support group encouraged us to seek different medical advice. We did and a positively wonderful response to Imuran therapy was most welcome.
Now when new people join our support group these remarks follow: "This is our poster girl. You should have seen her two years ago". In fact we have a video of a seminar she attended and you can hear her voice ---- but her slurred speech made it almost impossible to understand the question she asked.
So, on her 73rd birthday this (December ) we are celebrating because she is in remission and does not take any medication.
Editor note- I have know this couple for five years. It has been remarkable the results since she has received the correct medication. I can not remind people enough if you are not getting good results from your medications seek other medical help. But never change your medications on your own. This story again attests to the fact that this is an illness that most of us can live with. Sometimes we forget that the caregivers are in this illness the same as we are. I take my hat off to this couple, because they struggled through a very difficult time with her illness.
Marleen Burns Editor