First visit as a registered member

[AKjo]

Greetings, new people! You'll find the answers to many of your questions on the existing threads, and what you can't find, just ask. There is always somebody with an answer to your needs. So sorry you had to come here, though.

 

[1megian]

This seems like the best place for REAL answers, ideas that actually work and are practical. The last time he got out of the hospital and had PT and OT in they brought in foam tubing to put over forks and spoons .....this is 3 months after he had a stomach tube in and and stopped eating by mouth. Helpful.

 

[Gail K]

It took me a long time to get the activation e-mail too. I'm happy to be here too.

 

[happygardener]

Hi to everyone new. Sorry you have to be here but you have found a great place for all your questions.

Mimi, my husband was diagnosed Aug 30 this year. He went from a little shaking in his hands in April to head on his chest, and muscle loss in legs and arms by Aug.

Now he is in a wheelchair / bed, needs a lift to get him in and out of both and can no longer use his arms or hands at all. He is only 57 yrs old.

It is a disease that affects everyone differently.

Just know that you have a lot of support here and can find answers to most of your questions.

my husband was also daigonised in august.I am told to be prepared but know one can tell me whats next..it is so frustrating as i want to be ready for everything that can come up..they keep telling me everyone is different...

 

[Nathalie]

Hi everyone! My 70year old grandfather was diagnosed whit ALS on my birthday this year. It has really been a hard and frustrating 7 months and I'm really happy that I found this forum. My grand father was before the diagnose healthy strong and active and still working, and that makes it so hard to understand, everything is happening so fast and seeing him getting weaker every time I meet him is really scary.(pleas excuse my grammar and spelling, I'm Swedish)

 

[mimipgm]

Welcome to the forum, y'all. Hopefully you will find lots of answers to your questions here.

Mimi, to answer your question: ALS affects everyone differently. However, your mother's progression does seem quite aggressive. How old is she and has she had symptoms for a long while?

My mother is 78 years old and has been the picture of health up to this point. We are so confused with this aggressive progress. Her neurologist is baffled as well. Do you think she has had ALS much longer than we thought and the symptoms were not severe enough to know?

 

[Kevalyn]

Hi everyone. Seems like a lot of activation codes just went out. I've been reading on here for months too and so grateful I can now post. My mom received her official diagnosis in April, but we'd been trying to find out what was going on for a while. It seems like after her diagnosis, the disease has progressed at an alarming rate. As of now, she can no longer walk, is on oxygen & will be getting a feeding tube soon. I know no two people progress the same which is part of the difficulty of tracking this disease. At the rate she's going, I'm wondering how much longer do we have with her. It's so painful to see her suffer. Thank you all for support and wisdom.

Kevalyn