BulbarALS

[Debk]

I was diagnosed with Bulbar ALS on April 4, 2925 . I spent 8 months with numerous Drs' visits with their numerous tests in an attempt to get a diagnosis. Finally a wonderful Dr. at Mayo in Jacksonville Fl provided me with that diagnosis. My symptoms had begun with slightly slurred speech in August of 2025.
I would like someone to give me a little insight into their experience with this type of ALS.
My speech is much worse now and I'm sorry I didn't know about voice banking soon enough to record myself for future communication. That being said I continue doing speech and swallowing exercises.
I am also investigating various clinical trials to slow the progression. Thanks for this opportunity to reach out to others who might be suffering with this devastating disease.

Of course I meant my diagnosis came in 2025. I don't expect miracles here!

 

[Nikki J]

Sorry you have to join us.

Did they prescribe nuedexta? That can transiently help bulbar- though more swallow than speech usually.

Do you have any recorded voice? Videos, messages etc? They can sometimes use a small amount to get something usable The elevenlabs clone system can work with any 30 minute total. I think some of the others can get you something with even less. The other suggestion is if you have a close relative who sounds sort of like you they can record for you.

 

[TFB]

So sorry for your diagnosis. I am a 64 yo male also with bulbar onset ALS. Diagnosed in December 2022. It's very typical to go over a year between first symptoms and diagnosis. My first symptom was slurred speech. The first neurologist I saw even ruled out ALS, MS, Parkinson's. All the scary stuff. He sent me for blood work, scans, to an ENT and speech therapy. Finally he referred me to a movement specialist. I banked my voice in March 2023 with Acapela MOV but now there's Eleven labs like Nikki mentioned. Ask your friends and family if they have any voicemails of you still on their phones. Eleven labs can use those. It's free if you go through Bridgingvoice.org. You can then use your voice clone on your phone or tablet. My voice is basically gone but I'm still eating, drinking and taking meds by mouth. I've just learned to eat slower and hold my chin down when swallowing liquids. The users here are very helpful. I go on here pretty much daily to read advice. It helps me to realize I'm not alone in this struggle.

 

[Debk]

Nikki J: Thank you for your reply. I have been taking Riluzole since my diagnosis. I haven't been told about nuedexta. I have my first visit with the Mobile, Al ALS clinic May 9. I will be sure to discuss it with the neurologist.
Thanks for your suggestions and I will look through my old videos to find some voice recordings.
I'm spending a good bit my time and energy researching clinical trials that might be beneficial. I know my Bulbar ALS is aggressive and I need to try to address my symptoms before I lose limb function. I have experienced consistent burning pain in my left hip and leg. Also, a lot of fatigue and loss of stamina with significant weight loss.
I'm blessed with a loving supportive husband of 47 years. Right now he's a big concern for me. I'm 73 and he's 75.
Really want to balance medical treatment with quality time with him.
Would love to hear from folks on a similar journey.

 

[JAM]

@TFB when you say your voice is gone what does that mean?

 

[IreneD]

As I read the timelines for people with bulbar onset, I realize that there is really no one timeline that you can extrapolate for what your journey will be. My husband's timeline, in retrospect, was very fast compared to what other people seem to be experiencing. My husband had slurred speech in August/September of 2023 and he sounded slightly drunk. In December 2023, he was diagnosed by an ENT and by that time he had difficulty forming words and being understood. In March 2024 he had a feeding tube inserted, but could still eat and drink. By September 2024, he could no longer eat or drink. He had to thicken his liquids to make swallowing easier. By September 2024, typing and writing became difficult and by February 2025, he could no longer type or write. In January 2025, he could walk short distances with a walker, but he could no longer do any self care--I had to dress him, bathe him and prepare all his feedings. He couldn't get into or out of his hospital bed, but he could still get out of his office chair. He couldn't lift his hands to his face in the last month of his life. He died in March of 2025.

If I have any advice to give, it would be to do your PT and OT exercises. There is a chance that his mobility and his typing and writing abilities would have lasted longer had he been more diligent. The awful moment for us came when he could no longer balance standing up. Without his ability to stand, he would have been bedridden had he lived any longer.

It is a horrible disease. Please tell each other frequently how much you love one another--it can't be said often enough. Here is something that was read at his memorial that I loved.

"I step into my husband’s arms, soaking up his warmth and scent. We are in the twilight years of a long love affair, and it has recently occurred to me that a day will come when one of us buries the other. But, I remind myself, that is the happy ending to a story like ours. It is a vow made and kept. Till death do us part. It is the only acceptable outcome to a long and happy marriage, and I am determined not to fear that day, whenever it arrives. I am equally determined to soak up all the days between."

Irene

 

[lgelb]

Just a clarification for newbies -- being unable to stand does not mean being confined to bed. CALS generally use a floor or ceiling lift to transfer the PALS to and from bed, shower/commode, and wheelchair or a recliner. As an example, my husband transferred via lift for 3y. But many PALS become unable to transfer comfortably and they may decide to or naturally pass on near that time.

In ALS, more PT and OT are not necessarily better. This isn't like strengthening muscles so they will work better, as people with healthy motor neurons can do. Too much work can make the "battery" (the motor neurons that power the muscles) fail faster. So exercise in ALS is more like you set your device to "charge optimally" so the battery will last longer. Unfortunately, there is no such automatic setting for ALS.

JAM, when someone says their voice is gone or basically gone, that means they can't speak or can't communicate vocally. As we have discussed, that time can come when someone can still eat and/or breathe well, and vice versa. It all hinges on which muscles go when, and how long/well other muscles can compensate.

Likewise, with typing/keyboarding, there are many options for keeping that going, but they depend on what muscles are usable -- it's not a one-size-fits-all.

 

[IreneD]

We had PT and OT as recommended by our MGH ALS team. The exercises would not have improved his abilities, but could have maintained what he had for a bit longer. My husband got to a point where his only ability to communicate was through an alphabet board and with eye gaze technology which was doable, but tiring. At the end of his life my husband was unable to eat, unable to speak, unable to use his hands, unable to do any self care, unable to eat by mouth, unable to walk and so the idea of lifting him and transferring him to bed to the commode to a recliner was not a life he wanted to live.

 

[Debk]

Thank you Irene for sharing your and your husband's ALS journey. Obviously, you handled it with courage and grace. I hope my husband and I can follow in your footsteps.
My symptoms seemed to come up over night one night in August 2024
Woke up after having what I thought was a nightmare, but in retrospect know it was a tongue spasm. Had slightly slurred speech as a result and that sent me on an 8 month odessy trying to get diagnosed. On April 4 of this year in the Mayo, Jacksonville clinic the Dr. told my husband and I that I have an aggressive form of Bulbar ALS.
I am a retired RN, so I know the outcome and how we lose parts of our body until the end.
I can't get over how little progress has been made toward it's treatment and of course, the lack of a cure in almost a hundred years since Lou Gerhig's diagnosis .
At present I am researching for any clinical trials that might be beneficial. I will have my first visit to an ALS clinic May 9.
Hopefully they can give me ideas related to treatment that might slow the progression
I believe in being proactive while focusing on my relationship with my family and friends while my health permits.
Bless you for sharing your story.

 

[ljlorie]

I have bulbar....started in 2023..diagnosis was 2024 feb had a feeding tube placed in march as my body wwould never be as strong as it was at that time. Did not use the tube until june at which time i had no troubkes swallowing justtook a lot of time to eat in july I could not speak. I am fully dependant on my feeding tube and have noticed no more changes since July......I am still working full time and enjoying traveling with the family....

 

[JAM]

It is wonderful that you have not noticed any changes since July! I hope for your continued non progression

 

[TFB]

@JAM, when I said my voice is basically gone I meant I can still make noises but it's very difficult for anyone to understand. I can't pronounce words any longer. My utterances all pretty much sound the same. For me, it started with an occasional slurred word now and then in the summer of 2021.

 

[Debk]

@TFB
I'm debating getting the feeding tube even though it takes a lot of effort for me to eat at times. My EMG found very small deficits in my extremities. However, my speech and swallowing are my primary symptoms. Have you investigated clinical trials that might slow down your progession?
I want to be involved in a promising trial and I'm currently researching studies that might help

 

[TFB]

@Debk, I would have to be driven about 3 hours each way to participate in a trial. My ALSFRS-R score may exclude me now.

 

[Firefighter58]

Hi Debk
I have had this stinken disease for about 15 years and I have come to the point where I am confortable with it but I would strongly suggest you get the feeding tube, I have one and I only use it for my meds and eat in the normal way. I do have to eat in a very slow manner, about an hour per meal. I can’t speak and confined to a wheelchair but I have an app in my iPad that speaks for me as I type. Try to stay happy it’s much better for you.
Al