Bulbar ALS

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Richter

Member
Joined
Nov 9, 2022
Messages
14
Reason
PALS
Diagnosis
11/2022
Country
US
State
NJ
City
New Milford
I was diagnosed in October and went for a second opinion at Columbia Presbyterian. Lucky me, I have been told by two docs now that I have Bulbar ALS. It felt like i got run over by a truck. I am healthy except that I have choking sensations in my throat and 5 times it closed for 2-3 minutes. Started in March of 2022. Allergist, Gastro, ENT, Pulmonologist all could not figure it out. Speech therapist recommended a neuro consult. And here I am drowning in emotions and not knowing what to do first. I was off Tuesday and today I tried to go to work but was so overcome I could not get myself to walk in the building. I feel like a whimp for this.
 
Richter I am so sorry about your diagnosis. You are certainly not a whimp and of course you are drowning in emotions. ALS is a very
big diagnosis to receive. This forum is wonderful and there are people here that understand what you are going through. I am sorry to have to welcome you here. My husband has ALS and this Forum has provided us with emotional support and information.
 
Have you any appreciation for how long people survive on this? I have 3 very little grandchildren. I cant even look at their pictures right now because all I can think of is that I will not see them and they will never be able to remember me.
 
We are all different. Conventional wisdom is the bulbar is faster but I know slow progressing bulbarians. Were you prescribed nuedexta? That can temporarily help bulbar symptoms sometimes. No guarantees Of course

while you are naturally in shock now is the time for message banking and also for recording video messages and perhaps also you reading favorite books so even if your voice is affected badly you can have those moments and even after you are gone they could benefit a time which I hope very much is a long time away.
 
Very sorry to hear about your diagnosis.

In some cross-sectional studies, median bulbar onset ALS survival is 26 months past diagnosis, which more than doubles if progression is limited to the bulbar region for 20+ months ("isolated bulbar palsy," with which being female and a more upper motor neuron presentation is more often associated) but as Nikki says, nothing is written in stone. The longer you have purely bulbar symptoms, probably the longer your survival, but survival is also changing for ALS generally.

Besides Nuedexta, Riluzole, Radicava, and Relyvrio are all treatment options to discuss along with many other strategies to extend the time worth living. And we would expect these to extend survival as a whole.

You will be able to "see" your grandchildren, even if virtually, as they grow, and they will grow understanding that you will communicate with them differently -- using a computerized voice (that are pretty good these days, and they might enjoy hearing you switch to different accents, etc.), texting, signing, dancing, whatever you come up with for however long. And these sessions can be recorded so they do not forget. You can dictate letters to them and send them whimsical gifts. You can watch them learn, play, and travel and you can share your local plants, animals, destinations, with them. Etc. While your limbs permit, you could knit/cook/craft/compose something for them and ask their parents to record its receipt.

You don't know what time is left -- few of us do -- but you can find lots of ways to make it count.

Best,
Laurie
 
I am sorry you have ALS. Take the quiet time that you need. Share your wishes and fears with your children so they can lovingly care for you.

My husband has ALS, and this forum has been invaluable. I am sending love.
 
Richter. My husband Tom received his official diagnosis of Bulbar Onset ALS in August at the NY Presby Columbia ALS Clinic. Our neurologist correctly diagnosed him in July. Tom had slurred speech and difficulty drinking liquids around March 2022. But when we look back there were little hints as early as December 2021. Tom is 69. His ALS has progressed to his limbs.
He has been on Riluzole and TUDCA since .. His team did not initially think Nudexta was crucial, but now they changed their mind. We had our first clinic meeting Sept 8. Second will be Nov 17. (December was fully booked and I did not want to wait until January).

After Nov 17 I will post an update on the forum.

Tom is getting his feeding tube Nov 23. But it has to be done by the Center for Digestive Diseases because it is higher risk. He is unable to lay down any lower than 60 degrees because he can't breathe.

The initial shock is a shock. And then you have to manage this....and manage your care by HCPs as best as you can. I have found the ALS Association NY Chapter very helpful.

We also have precious grandchildren. They are our joy, as is our daughter and her husband.

God bless. You are in my prayers. Along with all the PALS and CALS.
 
TomsWife, Tom should be able to have the tube placement done while on BiPAP, whether in radiology or a surgical suite. That would reduce his breathing difficulty and make for a safer procedure.
 
Thanks I’m trying. Doc at Columbia Presbyterian calls it Bulbar onset and he distinguishes that from Bulbar ALS. I don’t know the difference
 
I have a lot of project management experience. I am used to planning, researching, organizing, etc. I am the CALS and I am not just caring for but managing my PALS husband's healthcare. That is how we decided to go on this journey.
My PALS is not interested in all of this thinking, learning and more doing. He trusts me and I hope and pray I dont screw up.
This is a tough journey. It would be good to decide how you want to handle this because each phase is different and has different challenges. If people in your life can help you that would be best. My PALS and I are in the stage where we need DME - bed, recliner, ramp, wheelchair, bathing equipment etc etc. We are just starting to think about nursing and home health aides.
I would be lost without the people on this forum. I post a lot on this forum because I am trying to figure out what needs to be done and make good decisions.
The search engine on this forum is very good. There are many old posts that have good information.
Re the "bulbar" comment from your Columbia Doc. You can use the myconnect portal or email and ask what they meant. We are also Nypresby Columbia. They are very busy. And you may need to follow-up but you should get a better explanation.

Best to you.
 
"Bulbar onset" just means ALS where the first major set of muscles whose nerves can no longer control them are in the bulbar region -- where chewing, swallowing, and speech happen.

"Bulbar ALS" is not really a useful term. Most PALS have problems with bulbar function sooner or later, likewise their limbs and core. But there are groups of bulbar symptoms, that are called pseudobulbar palsy and caused by ALS, Parkinson's and other diseases. Then there is progressive bulbar palsy, which often turns into ALS, at which point it spreads to regions past bulbar.
 
Thanks to all of you who responded and thanks for your well wishes. Its been almost 6 weeks since the dx at Columbia Presb. I have lost some weight but my weight seems to have leveled off. I have adjusted to the Riluzole and Tudca. I await approval of the next drug. I think it is Radicava.

The emotional rollercoaster track has leveled off as well. I find that as long as I do not receive sympathy from colleagues and friends I do not think much about mortality and i remain calm and engaged.

I am planning to go back to work on 1/3/23. I hope that endeavor is successful.
I reviewed my first posts. I can tell that I was really down, I realize now that I can either wallow in self-pity or enjoy life. I choose the later.

ALS may someday take my voice, my strength and my breath but it can only take my dignity if I let it and, damn it, I am not going to let it. And who knows. Stephen Hawkins lived with ALS for 50 years. 50 years would make me 115. No thanks. I see what my parents are dealing with in their early 90s.
 
You were understandably upset and it is a huge shock to be diagnosed with this. I'm glad you are finding your way through to thinking about living the best you have.
 
Richter. As Nikki wrote, we all benefit from radical acceptance. Nikki has a post on this. It is said we "rise to meet the challenges in life". What seems incomprehensible becomes doable. Somehow we see ourselves through it. We all hope you have people helping you in whatever ways are needed. Hope is a mysterious medicine.
 
Richter hello, so sorry to meet you here but so be it. Don't let talk scare you ALS is just another way to die and we are all heading down that path. I was diagnosed with Bulbar about 9 years ago and I have lived an eventful life since als, a feeding tube but I still eat in the normal way, I still drink in the normal way, I only use the tube for meds twice a day, I have a hospital bed but I still sleep in the normal way ( no assistance) I communicate with a text to speak app which every one is familiar with , the only drugs I take is Riiuzole and one other drug for stiffness in the joints . After you get over the fear of als and you start living it, then you will develop your own life with it. Always looking forward to tomorrow.
Al
 
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