BulbarALS

[Debk]

Thank you Firefighter 58. Congratulations on your resilience. Were your initial symptoms Bulbar related? My speech and swallowing have definitely worsened in the past few weeks. Seriously considering the feeding tube, but psychologically not ready.
Having difficulty coming to terms with having been dealt this disease. Angry that ALS has been the red headed step child in scientific breakthroughs. As I try to find treatment trials that might help slow this progression, I'm stunned and dismayed at how few there are that are currently enrolling.
Seems like enough time has passed that treatments should be available so an ALS diagnosis isn't a death sentence. Rather, like a diagnosis of AIDS, be viewed as a controllable chronic disease.
As a nurse, knowledge of what to expect is both traumatic and depressing. Feeling at a real low point.

 

[lgelb]

As a reminder, there are usually "not yet recruiting" studies as well, Deb, and you can get on the notification lists.

AIDS, is of course, caused by a single virus, whereas we do not know the cause(s) of ALS. I would relate sporadic forms more to cancer, where we know some of the risk factors but not all, nor the catalysts for onset in person 1 vs. person 2 at similar risk on paper.

 

[downtown21]

With research grant awards being terminated every single day, I think you’re going to see less and less studies enrolling.

 

[JudySmith211]

I reached out to Team Gleason and the put me in contact with Bridging Voice and they are very helpful. I highly recommend you contact them to see what’s available for you.

 

[Finndoodle]

WOW Irene, your husband’s timeline sounds exactly the same timeline we are experiencing with my husband. He was diagnosed last May (2024) and already has no ability to speak. He can no longer use either hand. He can no longer use a walker so depends on an electric wheelchair. He had refused to have a feeding tube and finding things to feed him is a daily struggle. I bathe, dress and feed him. The neurologist appointment last week advised we start looking for a nursing home as I have no daily close to help. I’ve had T1 diabetes my whole life with some minor complications but I’m getting very tired and overwhelmed trying to care for him.

 

[EileenMendez]

The Pulmonologist and Neurologist Doctors recommended my husband to get the feeding tube he was not sure he should do it. As the ALS has progressed there are days it is too hard for him to eat and we are both happy we can use the feeding tube. there is no pain involved and it is easy to care for it. The Doctor told us there was a short window we are grateful for that push. My Husband has problems breathing as the ALS attacks the muscles, Blessings

 

[Debk]

Eileen, I appreciate your information about the feeding tube. I have decided to have one performed as it takes so much effort to eat . In order to maintain my weight I feel I'm constantly concerned about my intake.

On another subject, has anyone out there had luck getting into a stem cell treatment study? It is very frustrating trying to find one that is enrolling.

I'm also open to any drug clinical trial . As long as my symptoms haven't progressed, I believe now is my window of opportunity. I do appreciate the support shown for myself and others battling this miserable disease. My heart also goes out to the families and friends that are affected too.