Recent content by Allie1987

This is all super helpful - thanks so much! And thanks very much to lgelb for the offer to help with settings. It sounds like this is maybe not as dire as he is interpreting it (in terms of his ability to continue to get out and enjoy life) - which is very encouraging. On the upcoming FVC...

What a sweet picture!

Hello Everyone - I posted a few times in the winter soon after my best friend was diagnosed. I’ve been back here to find info many times - which was very helpful! - but haven’t posted in a while. The quick update: P. has lost the use of one arm completely; can still walk, but barely (wheelchair...

Tom’s Wife: I’m very sorry for your loss. And, I related to your story about the screwdriver. My PALs saga started at a restaurant where he had been served steak, and for some reason was having trouble cutting it. Was the steak too tough? Knife not sharp enough? It would never in a million years...

Hello everyone. I posted here a few months ago about my best friend who was diagnosed with ALS in January (limb onset, C9 positive). He is handling it well but, unfortunately, the progression is more rapid than we had hoped. He has now completely lost the use of his right arm, is having great...

Kelli, just wanted to say I am thinking of you and am very sorry for your loss.

My PALS (who is my best friend) called me today totally distraught. He got an email that said SSA denied his application for SSDI. Neither of us can figure out what happened, because as far as he knows he never even submitted it! He was working on it online but was not done. Maybe he hit...

Thanks so much to all for your replies, and my apologies for my delay in replying in turn - I was traveling. So, to respond: =He is not a veteran unfortunately —He is on Medicaid right now - that is how he is getting his health care. He is in the process of applying for SSDI, and when he gets...

That is super helpful advice, Kim. Thanks so much!

Thanks so much! All three children are in their 20s and one just got married, and I believe the newly-married couple wants children. So yes, a lot to think about.

That is very helpful info about one mobility device every 5 years - thanks! I will talk to him about the pwc. He currently lives in a second story apartment with no elevator so moving will become an issue as well. I was thinking about gifting him the electric scooter as he does not have much...

I posted for the first time about 6 weeks ago, when my best friend received his diagnosis. He is a central person in my life and like family to me (I am single), so this has been pretty devastating news for me as well as for him. To recap, his symptoms started about 2 1/2 years ago when he...

To M: That’s an interesting take - I may tell him about the feelings if they don’t pass soon. Of the two of us I am the worrier and he is the more accepting, easy go lucky one, so he would probably say: “You think too much!” (Something he has accused me of many times.) To Regina: I think you...

This is my favorite Bible passage. I had the last 5 lines framed and hung on my office wall. Unfortunately someone stole it (stealing Bible verses? really?) Maybe I will get it framed again and put it on my wall again… I could definitely use it!

Kim, thanks so much for your kind words! I want to make sure he feels loved and that he is not going through this alone. Of course, I am not the only close person in his life, but he will need all of us! Plus, as some of you may have experienced, he had to do a lot of waiting while getting all...