exchanging experiences with bulbar onset ALS

[rnewton60]

I would be happy to communicate with your father. I was diagnosed on 11/01/19 and can no longer speak but I can communicate via email. Just let me know if he is interested and I will send you an email address he can reach me at.

 

[ari3027]

Hi all, does anybody have experiences with Eradavone? We are considering it for my dad but one previous doctors advice was that it may be too late because he already has breathing issues and the drug could have negative impact on breathing. Curious to hear from your experience with this drug.

 

[lgelb]

It will likely not be reimbursed if his FVC is not 80% or higher as it was for the patients in trials, and in some plans unless his FRS scores on every item are 3+. For others interested, there is generally a <2y disease duration requirement as well.

Like most drugs for serious diseases, some patients' breathing does worsen quicker than you would expect with "typical" ALS [sic], but not a huge percentage.

 

[Jdeanda]

My dad started with bulbar issues in May 2021. It was confirmed a few months later. He waited to long to get his PEG tube, because he was/is in denial. And let me tell you , it was the biggest mistake! He lost so much weight and couldn't take his meds. By the time we were able to get him in he had lost 50 lbs in a matter of months, not to mention his mental state was severely impacted by that. The PEG tube has made his life easier, he is now 100 % tube fed . His voice has been slowly deteriorating over time. We can barely understand him. He has significantly gotten slower at walking. He gets tired super quick. He uses his bipap machine at his own pace. He needs to use it much longer and at night but he refuses. When I'm holding his hand i can feel his muscles twitching already. We haven't discussed anything about what our next steps are as far as when he loses his voice or when he loses the ability to walk and write. And i know that's not wise but its hard to plan ahead when he doesn't want to hear anything about it.

 

[GXTrex]

@Jdeanda

I am in a similar position to you. My dad can barely speak, walks slowly with a walker and spotter, and is 100% tube fed. He has a hospital bed and I recommend you look into that for your dad. He voice banked and we have an ipad which he can use to type words, or select images but he does not want to use it. We have an unboxed eye gaze but he does not seem to keen in setting it up or using it.

He has a cough assist and suction machine which he needs to use daily but no NIV. I mentioned going to the clinic to evaluate his breathing needs but he does not want to go. Whenever I bring up anything for the future like breathing issues/unable to communicate he breaks down. He likes to live in the moment and focus on what he can do which if course is great but makes it difficult to have those hard conversations.

 

[affected]

GXTrex and Jdeanda - I so hear you. My husband was bulbar onset and it really devastated him.
As CALS we tend to look ahead and sometimes PALS want to look back. It can make it seem like there is a huge gap between where we both are.
I can tell you are both doing brilliantly at dealing with one of the hardest things there is.
Remember that you can have all the information etc ready, but living in the moment with your PALS can be the best strategy too.
I often simply supported decisions by my husband that I felt were not good choices (similarly such as waiting too long for the peg), but I knew that spending all our last months arguing over these things would be worse.

It's not easy, and those conversations are really hard, let alone accepting choices made.

 

[Jdeanda]

@GXTrex I will def look into a hospital bed! My dad is super old school , with a flip phone and all! he never learned or wanted to text. He doesn't get on google or doesn't research anything. So technology for him is going to be a little hard. I'm hoping we have time between him losing his voice completely and losing his ability to write. I think right now dry erase boards are what is in his future if we are allowed that time. We were just taught how to use the cough assist and as of today he really hasn't needed it. He does need to use his BIPAP more regularly but him using it for an hour a day is progress from when he first got it. (baby baby steps). I know exactly how you feel about those conversations, but like @affected said its not easy but we rather also not argue and let him decide things like this at his own pace. at least he can control that part, even if it is only for a bit.

 

[Jdeanda]

Hi! i just read over your message, are you still mobile? I have high hopes that my dad will stay mobile for longer than what is expected. Hope and Faith!

 

[Jdeanda]

sorry the above message was for @rnewton60

 

[rnewton60]

Still mobile and was diagnosed on 11/01/19, but with a caveat. I am start to lose mobility on my left side. Dragging my foot and losing balance when I get in certain positions. But I just drove from San Antonio to Madison, Wisconsin 1300 miles in two days. So I am pretty mobile.