Caryl, the issue you describe  “I have a serious lack of energy, being able to only talk or be active for 2 hours and then I’m exhausted.”  would not be related to the disease in my opinion, since that is severe. Yes, people will lose some general energy overall but not what you describe. I can’t say whether the 3 ALS DRUGS you take would have… Read more

Caryl,  do you take any other meds?  The disease generally does not cause what you are describing. How is your sleep? Do you have sleep apnea?  Probably the ALS DRUGS you are taking wouldn’t cause it from what I have read.  But those combined with others may.  See your Doctor .

Elias,  There will be Phase 3 completion in 2024.  As of now it’s debatable whether it has any efficacy.

“laughter is the best medicine”.  Its true, at least for me it has been.  My symptoms started in 2006 and I was diagnosed in 2012.  I have only been taking Riluzole and a few common supplements.  My overall health is good and the main problem is spasticity from the knees down and very weak ankles.  My advice is to have a positive outlook,… Read more

I think that considering the price, the least they could do would be to mask the taste of it.

Jennifer that’s good information. I will be starting it soon but since I never take drugs on an empty stomach I will mix it with my Glucerna with water added  and probably have a small amount to eat before taking it.  Hopefully it has some efficacy, the Phoenix trial will shed more light on it.

Yes Amanda, anything that will slow it and of course anything that will stop it entirely. So long as the cure is not worse than the disease. I think it is initially caused by a virus that alters the genes that causes one to be susceptible to the cascade of neuron events that lead to this.

We all want something to address this disease, but I fail to understand what all of the commotion is about. Perhaps it MAY extend life by 6 months but if you are in the advanced stage of ALS you may not want to live longer. It may slow the progression which is good but apparently 6 no’s is meaningful,  at least for me, binding or not.

There… Read more

Kris, here is information that may help you. Although sometimes people progress slowly, sometimes very slowly. There really is no way of knowing how it will effect you until it does.

https://www.alstexas.org/understanding-als/stages/

The The ALS Association is a reliable source of information. 

Thank you Jean-Pierre for the compliment!

Lisa, for the first six years with this I sought nothing to do with ALS. I just continued to live the best I could. I have always avoided thinking about it with a few exceptions. I believe avoiding it mentally can only help. I’m in the U.S. and the health system treats you as you WILL BE an invalid soon and will be totally dependent on others… Read more

Lisa, Of course dose and duration are very important factors, but I think that relying on your body to give you a signal is not wise with a toxic compound like this.  What if there is no efficacy but it damages organs and that damage is not known for a few years?  Is it carcinogenic?  And although that article is not recent, it still applies… Read more

Bill, I’d like to know more about your statement “Clenbuterol use although huge drop out rate due to side effects was concerning”. Is there an article explaining this?

People can and do what they want regardless of the risks involved or whether it is trialed adequately. I don’t care what a Neurologist who is popular with the ALS community says about it or a trial in Italy shows unless there are valid trials that are peer reviewed. Here is another article with good information:     … Read more

Another thing about taking many supplements and meds is what they  may do to your stomach.

Lynn, a lot depends on your husbands condition and level of energy, since a trip like that would be tiring for those who don’t have ALS. Also the benefit of the drug (if any) needs to be weighed.  Many drugs fail  at the third trial, and the few that pass have to go through the process of a final approval.  What does your husband think about it?

All you have to do is read to find out its side effects.

That’s a very good point! While I believe in taking a few supplements to provide what our daily diet may not (especially minerals ), I like you have lived with this disease for many years without adhering to a plethora of supplements which may do more harm than good.  Drinking an Ensure is a “supplement” which many people use.

Notice the exorbitant prices of many medical hardware/software items including the infamous assortment of cushions available. While I respect competition, you have to be amazed and amused by it in my opinion.  Cushions are a prime example. I have used ones that cost $500. US, but I use one that costs $40. US that works better for me to… Read more

I think Dr. Bedlack is grasping for  straws like the rest of the research community. I don’t agree with him as to Clen.  Here is an article about its dangers written by  Leslie A. McCament-Mann, PhD, RPh
Clinical Toxicologist

https://www.poison.org/articles/clenbuterol-unapproved-and-unsafe-201

 

Mary, I suggest you contact ALSA (ALS Association ) who can give you better advice than I. They may send a nurse to evaluate your needs and help you with this .

Mary, there are many available on the internet and from local medical equipment stores. It requires set up, so a local store may be the best option.

After they ruled out everything else over a period of years , one excellent Neurologist concluded that it is ALS.  Later confirmed by EMG by a Neurologist  that manages two ALS clinics .  My younger brother has PD and my older brother died with AD and Covid, but otherwise I know of no family history of any of it . Personally,  I wanted to… Read more

Hi Stephen, I have both types. My air mattress is okay but has a few drawbacks . The main one is that there is not enough support on the sides of the bed where you need to sit before standing up . I felt that I would slide off the bed onto the floor . It has a different cover on it which is not as comfortable as a foam . And you need to set it… Read more

Linda, I have a similar problem. We use a portable urinal. They are used by truck drivers and come with a female attachment. Amazon sells them. Otherwise, plan your trip around your BM as well as you can, and buy an elevated toilet folding frame. I cannot get up from a low seat without armrests to use to push myself up since my back is weak.… Read more

Your ankles may weaken and cause you to fall. I wouldn’t resist using a walker or a rollator to try to prevent falls in the future.

Findings  In this multicenter, propensity score–matched cohort study of 324 patients with ALS, long-term intravenous edaravone treatment was feasible and was mainly well tolerated. However, disease progression rates, time to noninvasive ventilation, and survival probability did not significantly differ from matched patients with ALS receiving… Read more

I’m careful with dry particulate foods such as rice, nuts.  Otherwise I eat most things orally.  Have had ALS since 2005-6 and am pretty stable.

I believe low cholesterol is part of the problem with ALS.

 

I was using Miralax, or Docusate Calcium but if you can eat orally and not choke, I suggest apples, pears, beans and 3 prunes daily, which will probably eliminate the need for a stool softener.  I eat a serving of Fiber One with water every other day which gives me the insoluble fiber to keep me regular,  but it is dry and a bit gritty so if you… Read more

Hi, that is basically the approach I  have been using.  And then I use a hand held urinal in bed before stretching and getting up.

‘UpWalker’ is just a brand name. There are many similar ones on Amazon and elsewhere.

I have had custom AFO’S for a few years and they always create pressure sores at one or two areas on my feet. My main problem is foot inversion of both feet.  I will be getting new ones soon from a different clinic and will address these issues.  My PT says sores are common with wearers.

Is it appropriate to use the word “cure” when discussing ALS?
• Does talking about a cure for ALS raise false hopes?
• Is long-term remission a better term than cure?

“Cure” is a figment of the imagination.  I believe using the word at this time may raise false hope with some people.  Long term remission is, to my mind, is a better… Read more

Obviously it is not any one thing that causes it to develop over time.  The onset of major symptoms is like the tip of an iceberg where the rest of it has developed over years or decades.  First, I think there is a predisposition caused by a virus that does damage to the CNS. Then the disease progresses from there.  Think Polio, and Shingles… Read more

And researchers need to do more comprehensive studies with long term survivors. Why some do better than others. Part of it I know is attitude towards the disease and it’s effects on you.  Fighters stand a better chance.

We do atrophy from ALS and it is not only due to lack of movement as a result of ALS.  I can prove it to be true based on my own hands which I constantly have been using.

I had my first major symptoms of ALS in 2006. Since then I have had strong Spasticity but very few to no twitches. Sometimes I startle especially when drinking coffee or listening to music with a headset.   

Some of these may exhibit a “side or secondary effect” as well as a main effect.

Regarding this topic, here is a excellent article concerning what is happening at Mayo now:

https://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/neuroregeneration

 

I wish the good Dr. Bedlack would change the name of it since it “untangles” nothing. Unfortunately human studies are lacking on many of these substances and while they may be in general safe, there is always a possibility of an adverse reaction in certain individuals.

The Association does a lot of good, but like the rest of us they don’t have a solution to the problem. With research being what it is, I think their goal is unrealistic. My guess would be to double that, and you might get a cocktail that slows it. Aloha Frank said it well.

Burning coal creates toxins one of which is mercury. Its reasonable to assume some of it ends up in water in the area. Heavy metals like lead and mercury are most likely a factor as well as algae blooms. Leaded gas. And probably a variety of other things.

Perhaps Miralax would be of benefit to you.  And prune juice thinned with water.

First, I’m grateful for my caregiver, and other caregivers.  Second, I’m grateful for my alert and sharp mind. Lastly, I’m grateful for what I can still do for myself.

I agree with you.

I have been using a cpap/bipap for many years. Recently I had loud leaks that kept me and spouse awake most of the night.  I adjusted the pressure down by 2 levels and now I am sleeping like a baby and no leaks, or noise.  I looked into options and methods on YouTube for adjusting it and it has worked very well.  The pressure was too high for… Read more

https://www.npr.org/2021/04/09/985625902/andrew-pelling-how-can-plants-help-rebuild-the-human-body

‘something different from a molecular drug’ .  Unlimited research is the key to success.