Uncle with ALS, diagnosed at 26 - Amyotrophic Lateral Sclerosis (ALS) Message Board

Kinik · 05-22-2002, 11:17 PM

My Uncle was diagnosed with ALS, 4 years ago, at the age of 26. I am only 15, but I know enough to see how miserable it has made him. This past month has been horrible for him, but he is trying to make the best of it. After waiting what seemed like forever, he got his new wheelchair; the automated one, you can move with your hand. It gives him more head support and everything, but I think it frustrates him, because it`s getting harder to move his hand. His wife put him in this health center about a year back, and I don`t think that made it any better. Truthfully, the only reason she did put him there wasn`t for him, but for her, because she didn`t want a nurse coming into -her- home, invading her privacy. Sickening. I don`t like to see him the way he is, -- depressed. His birthday is coming up, June 7th, and I`m not sure what he`s feeling about it. I really want to go see him, but we've moved even further away from him, and I don`t think i`ll make it for his birthday. The reason i`m posting this is just to get things off of my mind, because right now, i`m not quite sure what to do anymore. Please, if you read this -- and have any words of support, don`t hesitate to post.

[This message has been edited by Kinik (edited 05-25-2002).]

drs · 06-02-2002, 10:31 PM

If you can't make it to see your uncle then send a nice card and a long heart felt letter, his body may not be working but he's still alive and it makes all the difference to know that you care. It would be a great birthday gift, your love and support. It's very sad that he's so young and has to go though this. It makes us realize how much we take life and health for granted. Write to him as often as you can, just let him know you are thinking of him.
Diana

Kinik · 06-02-2002, 10:44 PM

Thanks so much Diana. I`ve worked some things out, and I`m going to be able to see him for his birthday.

I do write him a lot. He has his own computer in the nursing home with him, there wasn`t much room for it, but he really wanted it. Even though his body's not all it was, he still can use his hands a little, and he plays around on the computer with that. I believe they even downloaded him a virtual keyboard too. But, really thanks again for replying.. good to know someone is out there

Sandra143 · 06-17-2002, 01:55 PM

Having to deal with the fact that someone that you love has ALS is so scary. I know. I was 17 I think when my dad was diagnosed with it. I knew about the disease cause of my uncle passing away from it. Now, my 22 year old brother and my grandmother have it. What I have learned from my father is that truly, laughter is the best medicine. Keep the smile on your uncle's face and keep in contact with him. Family is so important at times like this. I hate ALS with a passion, but it has also brought my family closer together. I know that at times you just don't know what to think...but its ok. If you want to vent and get things off your mind, your more than welcome to write me. I totally understand what ur going through. Just keep ur chin up and keep smiling for your uncle. Its the best medicine.

Kinik · 06-20-2002, 09:10 PM

Thanks a lot Sandra, you're right.. the best medicine is a smile