ALS Support Group

Tuesday, 8 January 2008

Tonight, I went to the once-a-month ALS Support Group Meeting, by myself. I left Chase at home with Chris. I was going to take him, but then Chris said, "Well why don't you just leave him with me?" Hmmmm, I thought. Now that's a concept! So, I had my night out by myself! Didn't have to worry about dressing him and taking him in and out of the car seat and taking the go bag. As soon as Chris got home from work, he bathed and fed Chase and hung out with him until I got home. I should have nursed Chase before I left though because I was totally engorged during the meeting and didn't bring my pump. So, as soon as the meeting was nearing it's end, I had to go. (Of course when I got home, Chase was fussy and wanted mommy, but it was nice to get away for once, BY MYSELF!).

The support group meeting topic was very interesting tonight. Divina talked about her experience living with ALS for the past 23 years, as she has been taking care of her husband who has had ALS since the 80's. In fact, she and Britt were only married for two years when he found out he had ALS. She was very candid and frank about her feelings and experiences, going through years of denial, clinical depression, violence, abuse, and thoughts about getting him a prostitute (because, as she put it, "The only 'S' I need is 'SLEEP'!). But, since he's been diagnosed with ALS, they have had a son (and she confirmed that Yes, it is possible..Even if they're invalids, that function for men never ceases to work!), and they have gone through many years of coming to grips with the illness and the effect it has had on their relationship as a couple. She has figured out how to go on trips (leaving him behind with nurses) for respite for herself, and they figured out how to support each other with their Type A personalities and life styles (as he is still a professor at UH, with many of his grad students who help by reading his lips - He has been living with a tracheotomy and ventilator since 1991 and Divina can read his lips flawlessly, though I never can tell how because to me they hardly move!). Divina is such a funny gal, full of life and has overcome many things, from being an immigrant from the Philippines when she first married Britt, to deciding to stay with him through this journey of ALS, to having breast cancer and a mastectomy (whihc she says was really the turning point in their relationship because they finally realized that she could die before him, even with his illness!), and laughing herself through it all, through the ups and downs of the illness.

I hope that the talk was enlightening for some of the new clients at the meeting. There are a couple of new ones who are in the early stages of ALS, having been diagnosed last year. They can still talk and eat independently, but are dealing with mobility issues. Now, us "old-timers", who have lost loved ones within the past year or few years, still come to meetings for support and to give advice on how to deal with ALS. Three of us there tonight lost our loved ones within a month or so of each other last year. But, it's nice that some of us still go to the meetings, to support those and their families who are dealing with and going through what we have all been through before.