Bulbar ALS

[Tomswife]

Richter. Tom is also with Nypresby Columbia. I just want to share that our experience is that they are very busy. CALS OR PALS Follow up is needed. For example, they gave us sample Nudexta. But, The NP forgot to call in the RX to CVS. Now Tom has none left and no RX. I did notify the NP via the portal. No response yet. This is the second time they failed to handle an RX.
I also had to request an EMG so we would have it b4 the second clinic meeting. EMG #1 was in July. This #2 was done in November. You can make requests.
I was told they have over 500 patients. You benefit from their knowledge. The drawback is their focus is not on you unless you contact via the portal or are there in the clinic.
We are grateful the clinic team is there. And...we have to manage just about everything.

Have they discussed Relyvrio with you? That is the new drug from Amylyx. It needs prior authorization and there are papers you need to sign (at least we did ).

Take care.

 

[swalker]

Richter, sorry to welcome you to this forum.

I think it was likely helpful to share your feelings in this post. Many of us (including me) kind of keep those feelings to ourselves. What I can say is that I went through a process very similar to what you described.

For me, it was really important to quickly reach an understanding that I was still me and I would continue doing what I could do, just as I did before diagnosis. What I can do has diminished, but I still try to get the most out of every day.

Work was a big issue for me. I worked in a very demanding job that I loved. I worked with great people and worked on interesting, challenging, and important projects. I continued to work for a few months after diagnosis, but did not tell anyone at work about my diagnosis. It quickly became obvious that I could not continue to work and my attempts to try were quickly wearing me down.

I made the difficult decision to quit work and go on disability. That was probably the hardest single decision I faced after diagnosis. It was the right decision for me. Once I stopped work, my progression slowed way down. I maintained my contacts at work and helped out occasionally over the phone in areas where I had unique expertise. That was wonderful, but that eventually came to an end.

When to quit work will vary by individual. One thing I have learned is that all of us progress at different rates and in different ways.

Steve

 

[KimT]

I found that the only people I can truly open up to are other PALS. Not that I haven't tried and I even went through months of therapy during limbo and after my diagnosis. I was a college professor and loved my job. It was easy, few hours, and decent money. The diagnosing doctor(s) all gave me the "standard" prognosis so I decided to quit. In retrospect, I probably could have worked another several years but who knows if my progression would have been this slow. Nobody knows.

Getting my feelings out is important to me. After a year of progression speeding up, I'm back in therapy and in constant contact with a group of slower progressing PALS. We share joys, disappointments, fears, and we get to vent with no judgment.

Each path is different. Each PALS has his/her/their own approach to living with ALS.

 

[Greeneyes]

I am so sorry to hear your diagnosis. My brother was just diagnosed in November. It was overwhelming news . Have you seen your neurologist and have you been referred to an ALS clinic? It has been very helpful to my brother to have all the resources available at his Clinic visit. Hope you find the support you need.

 

[Richter]

Thanks Al. Your story gives me a new perspective and hope. I really don't have much in my limbs (I probably should say "yet" and "thank God"). I can't touch my right pinky to my right thumb and if I move my feet side to side I get fatigue after about 10 side to side movements. I will keep you posted should things change. Again, I appreciate the benefit of knowing your experiences because maybe mine will be similar. 10 years and going strong was the not the expectation that I had when I left Columbia Presbyterian after the dx. Maybe I wasn't paying attention and was blinded by the news

 

[MupstateNY]

Richter, the surprise dx you got reminds me of galloping labor, which I experienced when I was induced, due to being two weeks late. In my galloping labor, I didn't have a chance to get a rhythm for coping with the contractions, because there was no break, no rest period between contractions.

In my case, the ALS dx was a relief when it came, because for several months I'd been becoming more and more sure ALS was the explanation. When I went to my first EMG, I commented that it seemed like my entire body was falling apart -- I couldn't find a theme that would unify all the weird changes I was experiencing. But your dx came suddenly, out of the blue, and that can be a special kind of torture.

I had/adopted my children at 40 and 48. Geezer parent! Our younger one is 19 now. But my main goal was to see him get his Bachelor's, and in August that dream was realized (long story why so young -- which does not include him being any sort of genius). Okay, I probably won't become a grandmother, but hopefully I was supportive when it counted and they will carry that with them.

I admire the conclusions you reached, and your honesty in your first post.

This forum is indeed a place where we can be honest with each other. I feel lucky to have found it.

 

[MupstateNY]

Firefighter58, can you tell me the name of the medication for stiffness, please?

 

[KimT]

Baclofen is used to treat spasticity.

I don't have spasticity but have terrible cramps and pain. I use Valium and it helps.

 

[Firefighter58]

Like Kim says Baclofen
Al

 

[lgelb]

Tizanidine is another option that may be better for some.

 

[Richter]

Hey Al. I am going back to work tomorrow. Doc delayed it from 1/3 so I could have 2 weeks of Nuedexta in me. You are 9 years post Bulbar onset and while I know everyone is different, your experience gives me some hope that I didn’t have before. My voice is still understandable. When that goes I am probably going to have to retire but maybe I’ll get lucky and keep my voice for a few more years.

 

[Firefighter58]

Ya Richter, I did the same I worked as long as I could then retired, I was like you to start with afraid of what was going to happen tomorrow then I realized that it didn't matter what was going to happen will happen anyway. I soon started doing the things I wanted to do for and taking all medication that was prescribed for me by doctors. I have two doctors one is my personal doctor that I have had for years and the other is my neurologist that I have had since ALS. I now live in a nursing home because after 8 years of taking care of me and lifting in and out of bed twice a day it was taking a toll on my wife so we decided a nursing home was best for both of us. She comes in every other day and I am free to leave anytime I want to as a matter of fact I am going home for the day this Saturday. All the kids will be there including the grandkids. Always looking forward to tomorrow.
Al

 

[Richter]

Update. I went back to work on 1/17/23 and made it all the way to 1/29/23 before contracting the meta pneumo virus. 2 weeks of struggling to breathe through heavy phlegm. The virus made my compromised voice unintelligible.
I am a criminal court trial judge (or at least I was) and I have to be able to speak well enough for juries, lawyers and litigants to understand me. Doc told me that because of the bulbar involvement, any respiratory illness is going to give me big troubles.
I decided to retire. I am angry about it but I know that it is for the best. I had planned to semi-retire after age 70 and I am only 65.
I realize that my first priority has to be protecting my body so that I can remain as healthy as possible. So while angry about having to retire, I am not giving up. I am now trying to learn a new skill (relaxing) and I am looking to find an activity that will keep me happy. Maybe golf when it gets warmer. If anybody has suggestions I would love to hear them.
i wish everyone good luck.

 

[Nikki J]

I am sorry you have been ill and that you were forced into a retirement you didn’t want. I hope you regain much of what pneumonia took

as to what you should do in retirement there are so many things! Do you want to travel? Now is the time. Golf is great if it is your thing. Do you like swimming? Lots of PALS find water activity helpful and more sustainable.

on another note your skills and connections would be helpful in ALS advocacy work if you have an interest

 

[affected]

So sorry you had to retire before you are ready.
It's ok to be angry just now. But don't hold onto it.
I like the idea of finding something you can enjoy to do in the meantime.
Nikki has a great suggestion that as well as something outdoors, you could help a lot in advocacy or something similar.