The Hard Part of Being Friends with PALS (People with ALS)

When I was diagnosed with ALS almost a year ago, I already knew a lot about the disease because my mom had died of the same thing. In the early 1990’s when my mom was sick, there was no such thing as social media. I do not know if my mom had any friends with ALS.

My life is different. I have met so many wonderful people with this disease, through our local support group, through the ALS walk, througn ALS TDI fundraisers and other events, and through a couple of different Facebook groups. My life is truly enriched from knowing these awesome people. The most active Facebook group is ALS – We are All in This Together. There is also a group for moms with ALS with kids under 18.

I knew the risk of befriending people with ALS. There is no cure. It is 100% fatal. This past week, one of my favorite people in our local support group passed away. You may remmber me talking about Deb with the awesome carwash gloves on her wheelchair leg rests.The last time I was with her, she gave me the Panda her son had made at Build a Bear (he made an extra one for “Mom’s Friend”.)

I loved Deb’s sense of humor – she was using medical marijuana for her pain. She said she never used it when she was younger because she was a gooodie two shoes. But, she said, if I knew then what I know now I would have! She also talked about falling in her living room and ending up on her back like a turtle on its back with no way to get up. Her family thought it was funny but it was hard for Deb to laugh about it.

Her disease progressed rapidly. She was full time in wheelchair, losing the ability to swallow, and losing the use of her hands when I met her and she was diagnosed just before me.

I also loved Deb’s tears. She hated the way she was living. It went so fast she didn’t have time to get used to it. She just began formula feeds a few weeks ago. She also had pain, which is hard for me to imagine how miserable that would be, since so far I don’t have any.

Though we were not friends long, I felt a kinship with her and I wished I could get to know her even better. Now all I can say is Rest in Peace my friend. My panda will always remind me of a great lady!

2 thoughts on “The Hard Part of Being Friends with PALS (People with ALS)

  1. My husband died of Alzheimer’s 4 years ago. Like ALS there is no cure. Before he lost his ability to think, he talked about his feelings – of the unfairness, of his frustrations…he decided he (obviously) couldn’t choose what was happening to him, but he could decide how he would deal with it. Choosing courage (as you & your friend(s) have is very hard…I know it’s not easy… but by finding enjoyment in every second you have is better – in my opinion – than going kicking & screaming into the end we must all face

    Liked by 1 person

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