Slow progresser (long post)

[Kristina1]

I feel like I am a medium-slow progressor. Not as slow as you describe, but I am a year and a quarter out from diagnosis and I can still walk, talk, and eat, though I do all 3 somewhat badly and with intermittent use of assistive tools/tech. But I can relate to some of what you say in your post. It really makes the timeline unclear. I can't drive our cars, but the biggest barrier is that both our cars are stick, and I don't have the strength to push the clutch, get the e-break up and down, and get the gear shift into reverse etc. I think I could drive an automatic with keyless ignition (turning key is hard for me). My husband suggested buying one, but who knows if I will even be able to do that in six months. Then again, maybe I would retain that ability for several years. We just don't know..and it's money we dont have to spare, so going into debt when there is no guarantee about the timeline is not something I'm willing to do.

I also feel guilty at times that I can do so much when rapidly progressing PALS have lost so much more in same time period. I know a local PALS in that situation and feel bad when I see him and his family, since we were diagnosed around the same time. But then again, I'm turning 33 (Saturday), and he's in his 50s. He got 20 more years than me of living able bodied before this hit him. And then I feel guilty for having that thought too.

 

[lgelb]

Kristina,

It's unavoidable to compare yourself with other people, with or without ALS. Don't feel guilty. It's also a coping mechanism for coming to terms with your own situation -- we all use benchmarks.

I understand completely about not wanting to roll the financial dice on the keyless car. It makes sense, when you will want to fund things that make a real difference later on. I guess one advantage we had was that due to other diseases, my husband had to give driving up way before ALS. See -- another comparison.

Best,
Laurie