Dar's ALS Journey

ALS Support Group

We’ve been attending ALS Support Group at the University of Minnesota since July, and we have found this activity to be immensely helpful. Dar often has four or more family member supporting her every month.

If you or a family member is battling this terrible disease, I would strongly suggest you find a support group.

I remember the first time we went. It was scary! If I found it scary, I wondered how much more so Mom must have found it. The scariest was the point where caregivers and family members separate from the patient with ALS (PAL).

Mom’s fear wasn’t any different than the fears of anyone else who ever had to make the bold and courageous step to attend a support group – she was afraid of what it would be like to see other people who were in an even tougher place, a place where she would likely be headed.

I think Mom went the first time for us. She’s like that. Mom is always thinking of everyone else, especially her kids. My sister and I shared with her that we really needed to go. In fact, I was in a place where I thought I needed to go even if she didn’t.

The second Tuesday in July we attended our first meeting. As eager as I was to give a support group a try, I was nervous as the day and hour approached. I wasn’t sure what to expect.

I remember sitting there the first day. I found myself wondering if I had made a terrible mistake! Just as Mom was afraid, there were many people much farther down the ALS path than we were and it was frightening, when you thought about it, to see. I was wondering if we should have come. I was wondering what Mom was thinking. I was worried that we shouldn’t have brought her.

The first hour of Group is for all; a speaker presents ALS related information to the entire group. When it was time to split up for the second part, caregivers and family moving downstairs while PALS stayed in the room, I was really worried about leaving my mom alone. She couldn’t speak (because of her ALS) and she seemed so helpless in the room full of strangers. She gave me the “thumbs-up” signaling that she was okay, and we left her alone, not knowing what was going to happen next.

When I walked back into that room to pick her up I was amazed. My mom had made several new friends. It was obvious by the look on her face as well as the looks on her comrade’s faces. Mom’s eyes were sparkling, as were the eyes of those around her. She said she had a wonderful time. It was nice to be around people like herself she later wrote us on her white board.

I understood. It was good for me to be around people like me too. There is a great comfort in being surrounded by people who understand the difficult road we are being asked to walk with my mother. The people who ran the group as well as the people who attended the group were all so nice and welcoming. It was as if they all remembered how scary their first meeting was and they reached out to us to help us feel welcome. We cam back the next month, and the next… we haven’t missed a Group yet!

My mom lights up the room every time we go. She reaches out to others in such a way that their faces light up in response. My mom, my hero, is a remarkable person. She is an inspiration to all who meet her.

We went to the ALS Support Group Holiday Party with our new friends last week. We participated in the White Elephant Gift Exchange and had a nice time. The pictures are from the party. We are thankful to MDA for offering this support group and appreciate all our new friends.