New PALS

Status
Not open for further replies.

kljack16

Active member
Joined
Sep 18, 2020
Messages
46
Reason
Lost a loved one
Diagnosis
08/2020
Country
US
State
MS
City
Starkville
Hi All,
This is my first post. My husband just received confirmation of the ALS diagnosis on August 31. As all of you know, it’s overwhelming and so much to process and so much to do.

We already have friends sending us articles and advice on nutrition and possible Chinese Herbal treatments. I’m not one for non-medical advice/treatments, but I also don’t want to forego something promising because of my ignorance or bias.

Do any of you know a reputable place to evaluate these things? We are in MS; so, right now, we don’t have doctors I trust (we got the official diagnosis from Johns Hopkins ALS clinic). We are headed back to JH in early October, and we will get a chance to ask a million questions, but I thought I would try here too.

One thing that was recommended from family but sounds crazy to me is Amyotrophy Convalescence Pill Series. Has anyone heard of this?

I appreciate all of you and I’m so sorry for everything y’all are going through.

Thank you,
 
I am very sorry about your husband.

I am happy you are at JHU. Next visit ask for contact information for the questions that inevitably arise. At Mass General where I am seen my contact person is my nurse.

we are always happy to help here too of course

all of us have encountered the ( mostly) well meaning friends who send all kinds of cures and treatments. There are a lot of unscientific things out there and a lot of evil people preying on the desperate. Some are merely misguided

i had never heard of Amyotrophy Convalescence Pill Series. I see it has 2 immediate red flags. It claims to treat many conditions and I couldn’t see what substances were in these pills. Don’t waste your money and don’t take unknown substances that could potentially contain something dangerous.

generally we advise maintaining safety ( don’t fall) and maintain weight. Also activity as tolerated but there will come a time to conserve energy.

is he looking at any of the clinical trials?
 
Really sorry to welcome you here.
There are lots of oral therapies that can help maintain health, but there are no cures yet.
We would be shouting them from the rooftops if so, truly.

But for now you are in some shock and need to allow the reality of the diagnosis to sink in so you can start living with this. As you move around here we have some resources, there is a search function, and there is the good old 'just ask what you need to know' as well.
 
I am sorry to have to welcome you here.

For about 6 months after diagnosis, I was inundated with useless recommendations from friends and strangers alike. To be charitable, I will assume they were all well-meaning, though I think some might have had a financial motivation for their recommendations (think multi level marketing). None of them had a clue what MND is all about and none of their suggested treatments could have possibly made a positive difference in the outcome.

I even had friends in the medical profession (not my doctors and not neurologists) suggest I consider some of the stuff proffered by quacks.

I suppose there could be some emotional benefit to taking harmless "cures". But, many of the cures suggested to me would have, in my opinion, by harmful to my body. All would have been harmful to my wallet.

I spent a fair amount of time and energy investigating these supposed miracle cures. In each case my research led me to conclude they were hogwash. I wish I had that time and energy back. It was a total waste.

I am a skeptic. I trust proven medicine and would also consider participating in a drug trial if I thought one would be suitable for my situation.

Steve
 
I am not sure what you meant Tillie by lots of oral therapies that can help maintain health,but no cures?

right now we have riluzole and endaravone. We have symptomatic things like nuedexta and baclofen. There are supplements that some of us choose to try. There are things like safety and nutrition, stress management and energy conservation. All good and important but none of them have been shown to stop ALS
 
Thank you so much. You just confirmed what I was thinking. Another red flag for me was the “comments/reviews” from people taking it - the grammar and spelling looked like it was a translation ... which could be valid, but ...

My husband is just hoping/praying for anything; so I’m trying to be the voice of reason without discouraging him - tough line to walk ...

Yes - we are hoping for a trial. JHU has what sounded like a really good process. If we move back to Houston, TX (friends and family there for support), we’ll have the Texas Medical Center as an option too.
 
This is a hopeful time for the newly diagnosed there are several promising trials to choose from. Nurown has another week of data collection and their trial will be done. we can hope for approval Amylyx may get approved otherwise it will go to phase 3 JHU presumably offered gene testing. Do you have results yet?
 
I'm solidly in the supplement camp. When I was first diagnosed, I had lots and lots of blood work done. Some by my neurologist, some by my GP, and the rest I self ordered. I found some deficiencies and corrected them. Then I had a frank conversation with an ALS doctor who was not treating me. He believed cannabis was neuroprotective. First, I added CBD oil and found that I was no longer anxious. Then I added a small amount of THC and it helped with pain...just a little because I couldn't tolerate a high enough dose. Now, I take about 20 supplements a day. Both my local pain management neurologist and my primary care doctor believe in supplementation.

I strongly believe taking care of general health will improve quality of life, especially when a PALS is still ambulatory.
 
Very sorry that your husband and you are dealing with this. There are several types of things that can prolong quality and quantity of life for some time. Social interaction and adapting existing hobbies/pursuits as much as possible are also high on the list.

In terms of supplements, they require energy to metabolize, yet energy is often in short supply in ALS for several reasons. They also interact with each other, food, rx meds, etc. and can cancel each other out, not to mention potential harms, esp. but not only from combination capsules where the laundry list is more about marketing than science, as you point out. So it's best to be selective.

It sounds like you are thinking of moving back to Houston; I worked in the TMC. If you do make that choice, I would do so in good time so as to be able to enroll there for trials, and to stay ahead of the game in terms of equipment (for example, switching DME suppliers in the middle of a power wheelchair order would be problematic), while also giving yourself time to find housing that is accessible, compatible with equipment and possibly advantageous in terms of something like near a TMC light rail stop (also providing access to museums, parks, etc.), as well as near your supporters, if that's possible.

Ask us anything, any time.

Best,
Laurie
 
Wow Nikki I never said anything would stop ALS, not even close!
Things that you mentioned are what I meant, as well as high calorie diet, lots of PALS believe supplements they take help them.
I said nothing about stopping ALS.
Obviously I was clear as mud. Sorry I upset you so much, I was only talking about maintaining and increasing quality of life like all other posters here have done, obviously more eloquently than I have.
 
Lost in translation I think. I knew you didn’t mean what it sounded like to me because I know you would never say that. I was afraid others who don’t know you might also read” oral therapies “ as pills and potions which is how it sounded to me and maintaining health and progressing with ALS seem antithical. I know we are on the same page with what we believe
 
Actually, drinking caffeine burns more energy than taking supplements as does hard-to-digest food. My point was that many PALS do believe supplements are helping them and I am one.
 
Thank you! We hadn’t even thought that far (or soon 😳😔) to start thinking about medical equipment and what that will entail.

I truly appreciate all the advice and support. It means so much.
 
I'm sorry to hear about your Husbands diagnosis. My Dad was diagnosed July 2018 and we did the same thing the first few months. Searching the internet, mostly this forum, for any possible treatments that could help slow or stop his progression.

Today my Dad has progressed from where he was over two years ago but the disease has moved slowly and we're grateful for that. One thing that we believe has helped greatly has been his participation in the AMX0035 trial
This trial has ended with positive results and we're hoping that Amylyx gets it's treatment approved and doesn't have to continue on with a phase 3 (something to keep your eye on).

As well my Dad is on Rilizule and Edaravone, both which probably have provided some degree of slowing but it's hard to say for sure. He takes Baclofen and Clonazepam on occasion when his muscle twitching is too much for him.

As for supplements he takes prebiotics and probiotics, Curcumin, CBD oils (orally and on the skin to help with twitching), Wheat Grass, Omega oils, Resveratrol Concentrate, CoQ10 Active and Melatonin (to help with sleep).

This is the regiment that has worked to keep my Dad's progression slow and keep him comfortable but every pALS seems to have their own regiment that works for them.
The best advice I can give is that anything your Husband tries will feel like it's "not working" because there is not an improvement as far as weakness but giving things time to work is the only way to know if it's slowing progression.
My Dad would often start a supplement or the trial for example and not feel his strength coming back and would want to stop but we kept supporting him with hope and positivity and together the therapies and treatments have made a difference on a slowing of progression.
Just impossible to say for sure which things have helped the most.
 
Thank you so much Cherise! I will take a look at all of these.
 
Status
Not open for further replies.
Back
Top