Multidisciplinary Care in ALS Linked to Increased Survival, Spanish Study Shows

[Dagmar]

This is another validation that attending an ALS Clinic is beneficial for pALS! Although I regularly read comments from pALS that their ALS Clinic “doesn’t do anything,” I’ve found that framing my own expectations results in a better experience.

Yes, these clinics measure our decline, and, make recommendations for accommodation based on that decline. But… among the clinic staff is a wealth of information – – if only pALS would speak up and ask. And it is also important to let staff know that your expectations are to maintain your health and abilities for as long as possible. I wrote a helpful column on this very topic: The One Thing to Always Bring to the ALS Clinic.

As a side note, within this news article is reference to a nutritional study showing that a high-carbohydrate diet also proved to extend survival. Combined with the recent findings about how increasing dietary glucose supports our muscle function – – we are adding more pieces to the puzzle of how to live longer with ALS.

[Diana Belland]

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Hello, Dagmar,

I’ve just recently returned from my second ALS Clinic which took place July 10.   Reading your comments above as well as re-reading your column on the topic helped me to clarify what kinds of information I hoped to gain from the experience. I typed out a list of questions for each member of the team and at the top of the sheet, I wrote the question you suggested,

“What do you suggest I do to maintain where I am right now?”

As an ALS patient, I am participating at two different institutions.   I was diagnosed at the Cleveland Clinic in March, 2019 and am still considered a patient there, but, because my home city is a four hour drive from Cleveland, I am also a patient at my local ALS Clinic.   My first ALS Clinic took place at the hospital in my home city in April.  I have an excellent neurologist and the clinic team are kind, caring individuals.  But I found myself with many questions about things like exercise and nutrition, what to do to maintain breathing function, but no specific answers.   I think I expected clear guidance on these matters and was afraid to ask too many questions.

I approached my second ALS clinic with a different attitude.   In my consult with my neurologist at the Cleveland Clinic, I led off with your question above.  My neurologist seemed grateful for the question and assured me that I would be receiving answers to that question from the therapists I would be seeing.   I made a list of drugs and therapies that I have read about on ALSNewsToday and other sources, and he was very willing to comment on each of them.  Unfortunately, while I am good at asking questions, I never seem to be able to write the answers down while the physician is talking, so I find myself a bit muddled as to his specific responses to certain drugs and therapies.   However, his nurse assured me that I could message him on MyChart and he would be happy to respond.     At the end of my session with him, he thanked me for “all the great questions.”

The Cleveland Clinic has a complete staff of neurologist, nurse, social worker/therapist, dietician, speech therapist, physical therapist, pulmonologist, and occupational therapist.   Each one gave me his/her card with contact information in case I wanted to follow up with questions.  The physical therapist tested my walking, general mobility and flexibility, and in response to my questions about how to strengthen my back muscles, gave me a specific exercise.   He did not, however, provide me with printouts of physical therapy exercises as I had thought he might do, but rather told me to continue with my current exercise program.   His only caveat:  ask yourself two hours later:  do I feel better or worse after the exercise?  His conclusion:  “You’re doing great!”

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The Occupational Therapist had a different viewpoint regarding the nighttime splint I had been given to wear on my right hand (to prevent finger curling).   He recommended instead that I wear a very simple carpal tunnel hand/wrist brace with a metal insert (found on Amazon!).  I asked him questions about scooters and recumbent bikes, both stationary and three wheeled road type.   While he was hesitant to recommend specific brands, he did have some good suggestions.

In response to my neurologist’s request, I happily agreed to participate in two ongoing studies:  one for sublingual Riluzole and the other, being carried out at Dartmouth, which studies environmental factors in ALS.  I will begin receiving the sublingual form of Riluzole on July 29.  A nice side benefit is that all participants receive Riluzole free for as long as they live or it seems warranted.   The environmental study requires submitting monthly blood samples and one time samples of saliva and toe nail clippings.   Even though these are not drug trials with a promise of slowing down or curing my ALS, I’m grateful to be involved in any research which may eventually contribute to a better understanding of the causes and ultimately to a cure.

I do plan to follow up this clinic visit with emails regarding questionsle  I forgot to ask or answers I didn’t completely understand.  It’s quite a challenge to stay focused and alert for nearly six hours, especially when you’ve had very little food.   It would be great if they could schedule in brief snack breaks!    The next time, I’ll come armed with a small cooler and plenty of nourishing snacks!

[Dagmar]

Thank you Diana, for your in-depth description of your recent ALS Clinic experience! I’m sure this will help other pALS by providing a comparison to their clinics, as well as give our overseas Forum members a better understanding of how ALS Clinics operate in the US.

Bravo for asking all your questions!

And what a wind-fall to be included in the sublingual Riluzole study and receive Riluzole at no cost!

I have my ALS Clinic visit at the end of the month and will share my experiences here – – and I invite our Forum members to do the same 🙂 so we can learn from & support each other!

 

[Diana Belland]

Thank you so much for your response, Dagmar.   I’m looking forward to reading about your upcoming ALS Clinic visit, and I think it would be enormously helpful to hear from other members as well about their ALS clinic experiences.

I have a question for you regarding future posts by forum members about ALS clinics and neurologists:  are there any guidelines  for this forum that you would suggest we follow  in terms of identifying clinics and neurologists by name?   For example, I did refer to the Cleveland Clinic by name because it is such a well known center for the treatment of neuromuscular diseases but I did not mention my home clinic because I did not want to imply necessarily that it might be less effective for me than the Cleveland Clinic.   I’m very grateful for the services my home clinic does provide, and I have the highest respect for my neurologist.   However, I did note significant differences between my two clinic experiences.

I also did not mention the name of my CC neurologist but he is a highly regarded specialist in the field of ALS, is an active researcher and runs clinical trials to find effective treatments for ALS and other neurological diseases.   He is well connected to other ALS researchers, as I learned when I posed a question to him about a protocol developed by Dr. Richard Bedlack (whose name has been mentioned previously on this forum) at Duke. Dr. Bedlack is a friend of his so he was able to comment succinctly on the effectiveness of that protocol.    I had made a list of several drugs and therapies gleaned from reading ALSNewsToday and other sites, and I asked his opinion on perhaps four of them, including stem cell therapy.   We had only about five minutes remaining in our session at that point, but he was very willing to comment on those four (of ten or so…).   To my disappointment, he did not think any of them, for various reasons, were going to be the “big breakthrough” in treating ALS any time soon.

Do you think it would be helpful to forum members if we were to share, not only our experiences of our respective  ALS clinics, but any comments or recommendations that our individual ALS clinic neurologists make concerning drugs/therapies currently in development?  Would that kind of information sharing be useful or might it just burden us with “information overload?”

I know you’ll have some good advice on this topic—thank you!

[Dagmar]

Hello Diana,

I checked with Bionews (who publishes ALS News Today and this ALS Forum) and was advised that naming clinics and hospitals are fine, but we should avoid naming specific doctors and specialists, unless said doctors give permission.

Which makes sense, because this is a public forum. Names of specific doctors and specialist can be shared in private messages among members.

We can discuss the recommendations made by doctors and clinic staff, but members should remember that this is information only and not medical advice.

In general we shouldn’t put any clinics down… but we should share ideas, suggestions (like my questions for the clinic staff) that will in the end help everyone to get the best out of their medical visits.

🙂

[Diana Belland]

Thanks so much for your very helpful clarification of the Bionews guidelines, Dagmar!    Please feel free to edit my comments above to remove the name reference if you feel that might be appropriate.

I’m so grateful for this forum and for your good suggestions regarding how to make our ALS clinic experiences as useful as possible.