What do new diagnosed ALS patients want to know?

[Diana Belland]

Great question, Dagmar!

 

I received my official diagnosis on March 15, 2019.   My top three questions were:

1) Are there any new promising drugs, in addition to Riluzole and Radacava, that might soon receive approval from the FDA?   (I am taking Riluzole and quite a few supplements recommended by Dr. Erik Pioro of the Cleveland Clinic but all three neurologists I have seen were on the fence about Radacava.   I would like to learn more about it though…)

2) Am I eligible to enroll in clinical trials and how do I obtain information?

3) What kinds of exercise can I continue to do and can an exercise program help to maintain muscle strength and slow progression?

I discovered your column shortly after my diagnosis and I told my neurologist about it.   I told him you were my role model for “living well with ALS” and that I wanted to follow your lead with exercise, staying active and keeping a positive attitude.  He told me, “you can be like her!”   Of course, I was greatly encouraged to think I might be able to do as well as you have.  I think every newly diagnosed person wants to know “how much time do I have?”   I’ve learned through my reading on ALS and talking with doctors that no two cases of ALS progression are the same. My doctor told me he has a patient who was diagnosed 17 years ago.  So, it’s best to live each day as healthfully as you can and enjoy what you are able to do now in the present moment.

I apologize for rambling a bit in my answer!

 

 

 

[Amanda]

Good evening Diana and thank you for such a great post! I think your questions are great and I’m sure Dagmar (and a some of our pALS members) will reach out to you with their thoughts and answers. I find Dagmar’s column inspiring and motivating! She is a great role model, that is for sure!

I was researching clinical trials online earlier today. I did find one website that appeared updated. It was https://www.als.net/als-research/clinical-trials/257/   Please take a look at it and let me know what you think.

Amanda

[Dagmar]

Diana, As for new drugs and treatments beyond Riluzole and Radicava, that are available now – – there are none, yet. I have heard both positive and negative responses from patients regarding Radicava. It just doesn’t have the track record yet and daily infusions/injections can be challenging.

My “go to” site for a listing of clinical trials is the N.E.A.L.S. Consortium. They maintain an easy, up to date search page.

As for exercise – – check out our ongoing discussion over in the Living with ALS area. I have shared a lot of tips on my own blog and am happy to chat with everyone about this topic 🙂

“How long will I live?” – – is the real question on everyone’s mind! The diagnosis of ALS suddenly illuminates the crystal ball of life-span… our fatality becomes real. But, look at the big picture: LIFE is fatal. Morbid as it sounds, there are many ways our life can be cut short if we didn’t have ALS. Rather than worry about how long will I live, I try to live each day fully. No more coasting through on auto-pilot; I try to be aware, engaged, happy and productive. Doing this, I feel I’ve done my best; no matter what.

[Henry Kornacki]

Hi Diana

First  let me say how sorry I am in hear of yyour diagnosis. I can imagine what you are going through.  My wife first symptoms aappeared about three and a half years ago with subsequent diagnosis of ALS.

My wife has been participating in clinical trials and studies here in Australia.

In regards to exercise, I arranged for my wife to be under the care of a Rehabilitation Medical Specialist who has experience in ALS and he strongly belives in the  importance of exercise.  My wife fell late last year and broke her foot in two places. She basically couldn’t move and slept on a recliner armchair. After her foot healed she still couldn’t stand or walk because the inactivity had weakened her muscles. The Rehab specialist put her into hospital for two weeks for extensive physiotherapy exercise program and by the time she came home she was able to stand again and walk short distances.

We didn’t find our neurologist that helpful in advising us on future care.

One thing you will probably find is there is a great deal of information on ALS and much  of it is confusing and conflicting. Plus everyone is different. There are certainly a number of people out there who have lived with the disease for many, many, years. We saw three different neurologists who all told us if some of their patients who have had ALS for many years and are still going strong.

Kind regards

Henry

[Jean-Pierre Le Rouzic]

Henry, I agree completely with what you said. The information about ALS is confusing and conflicting and each case is different.

In the case of my two relatives that had ALS, the neurologists that were consulted (in France, and including an ALS specialist!) did known very little about ALS. Certainly much less that what can be learned by browsing casually on AlsNewsToday.

What complicate things is that there are many pathologies that are very similar to ALS, for example the Wilson disease which is treatable. In the UK they lump all those diseases under the term “Moto Neuron Diseases” which may be very wise. But some diseases like SMA (kind of ALS that strikes infants) are still not included under this umbrella term.

A good list of diseases more or less similar to ALS is on Wikipedia