Recent content by RandiLynne

Pals hospital bed was delivered Wednesday, and I look at it wondering how in the world will he be able to sleep, be comfortable, and most importantly, not fall out. He has to sit in upright position due to tube feedings and severe shoulder pain if laying flat. The guard rails don’t serve any...

My pals is a veteran, and the van is part of what the VA pays for.

Hi Nikki. He is the salesman at United Access. Said he is sending the 4502 and the one for the adaptations (can’t remember the form number), along with an invoice to the Fayetteville Arkansas VA where they handle the vehicles. I could understand if Scott was going to be driving, but that isn’t...

We received our vehicle grant approval and signed certificate, and took to the place we found an already converted vehicle. He told me that after they send it to Fayetteville, there will be an appt at a local physician, he didn’t know who, for an independent eval. We were told initially all we...

My therapist told me I’m very good at finding solutions, so I need to make sure I don’t do something because I thinks it’s what’s good for him but in reality it’s to make myself feel better. I question if that is what I’m doing.

Posted this in caregivers thread, was suggested to put it out here.

How do you make it possible to quit working, so you can stay home with them before they lose all ability/mobility? I hate to think we are wasting the good days with me working and him home and all we’ll have left are the bad.

Thank you, Laurie. I feel like I’m walking on egg shells, not wanting to say or do the wrong thing. I’m trying to be ok, but I can’t be ok all the time. What does rapid progression look like. In the week since diagnosis, he has a lot of symptoms now that he didn’t have when testing was being...

We got the ALS assoc material today. I’ve read through some of it.

Thank you. There is a lot to do, that’s for sure. This feels like it will change me to the core of who I am. I find it hard to have conversations and even this; it’s like I just have no words, and I can’t think of what to say.

My husband of 32 years was diagnosed with PLS/early ALS on March 10th. I’m not sure what has happened but in just this last week he seems to be going down hill very quickly. When we were at Mayo he didn’t have any speech or eating issues and now his speech has slowed significantly, he says his...

Thank you MJT. We feel very overwhelmed thinking about the future but know that we need to get our fairs in order sooner rather than later. He is a veteran, and we have reached out to the local PVA chapter to see what he needs to do to get started with the VA. He is really angry right now, and...

Good morning. We bypassed our local healthcare due to long delay in getting testing done; we have been at Mayo Clinic in Rochester for the last week and a half. Yesterday was our last appointment with neuromuscular specialist for discussion about findings. He said all mimickers have been...

PCP sent us to ortho specialist to check for musculoskeletal possibilities. While he does have some arthritis and degeneration, ortho said what he is seeing is not musculoskeletal in origin but rather neuromuscular. He observed marked atrophy in left forearm and biceps, as well as definite...