Hello

[red67]

I just wanted to introduce myself. My sister was just diagnosed with ASL. She has been dealing with it for two months and just told me. She lives in Virginia and I am in California. She is experiencing weakness, twitching, and wasting in her right hand and arm. She says her pinky and thumb will not touch anymore and that her pinky refuses to participate with the rest of her hand. I am here to learn more about this disease and to find out what I can do to help my sister. She is 49 years old and I am her younger brother of 48. She is a marathon runner. I asked her if she should still be running marathons or if it would be too taxing on her and she said she will run until she can't anymore and then she will crawl. This is heartbreaking for my family. I'm just trying to learn what we should all expect. Thanks for listening.
Red67

 

[CindyM]

Hello Red- sorry you had to come and seek us out but I am glad you found us. It is devestating to a family when they first get the news. Feel free to write anytime and ask whatever is on your mind. Cindy

 

[pmbenb83]

Hi Red,
Sorry, I must have missed your post a month ago. We also live in Virginia (No. Va metro area) and my husband has a mnd, but they haven't pinpointed which one yet. Unfortunately, we noticed tonight at dinner he can no longer touch his pinky to his thumb on his right hand or snap his fingers. Thankfully, this seems to be moving slow, but not slow enough for me.

Anyway, I thought I would just say hello and welcome you to the forum. This has been a great place to meet people who are experiencing the same thing and to get much needed information to take with us to the doctors.

I hope your sister is doing well and getting ready for another race.

Take care.
Pam B in Va

 

[Al]

Sorry I missed you too Red. Welcome. Jump in whenever you like.
AL.