Last Monday I went with Mom to an MSA support group at Virginia Mason. They meet once a month and our family has been encouraged to attend. Mom and I went to the first one, both of us nervous and in agreement that we were just going to listen this time. Well we walked in and it was much more intimate than either of us expected. There were 6 other couples and 1 wife/caregiver (Kathy) and us. So much for just listening. It was an interesting experience. The people there, including us, were all at different stages of dealing with this disease.
One couple sitting across from us had just received their diagnosis a few days prior. By looking at the man I thought for sure he was farther along in the disease than dad. He was skinny and gaunt looking and his mouth hung open but then he picked up a pitcher of water and poured himself a glass and after the meeting was over he got up and walked on his own out of the room. Two things my Dad could not do.
Another couple at first looked as if the wife was the sick one. She was in a wheelchair and he was talking about how he just retired and how he was enjoying it and they are taking a train trip across country this summer. Then as he was talking I realized he, the husband not the wife in wheelchair, was the spouse that was afflicted with MSA. He was talking about how he is still driving but he has had a couple scary moments including rear ending someone when his foot froze on the gas pedal. He said his doctor hadn't said anything about not driving yet while his wife shot him a dirty look. This reminded me of not so long ago a certain Mike Kissler in denial about his driving future. It sucks to have that Independence taken away form you. I wanted to cry because that man was so cute and happy and positive. I wanted to cry because that man will be a totally different man a year even 6 months from now. I wanted to cry because seeing his wife in a wheelchair reminded me that there is always someone who has it a little worse than you do. I wanted to cry because this fucking MSA shit sucks.
The woman sitting next to us was Kathy. Her husband, Jim, started this group. He was not there. The woman leading the group asked Kathy to give us all an update on Jim. Jim is 54 years old. He is nearing the end of his fight with MSA. He is on a feeding tube because the disease has made swallowing impossible. He was recently hospitalized for aspiration and Kathy was told by doctors to prepare for the worst. As Kathy said, "Jim proved those doctors wrong" He is now in an adult family home as Kathy realized while he was hospitalized that she needed to move him at least 3x a day to avoid bed sores. Something she is not physically strong enough to do herself. When Mom asked how he adjusted to the family home Kathy said that he is fine during the day but scared to be alone at night. Because of this, Kathy sleeps on a cot next to him at night. Mom asked Kathy how she handled all of it as she seemed so well put together and an expert on all things MSA. Kathy's response to mom was "as they say in the south, where I'm from, I'm not right."
Kathy told us that Jim has said "you have to reinvent yourself" with this disease it steals away so much from you you have to figure out how to keep quality of life.
All in all, the support group was helpful if not a bit depressing. I'm sure it will be a good place to vent in the future.
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