Duane
Forum Replies Created
-
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 this effect in combination. However, feeling exhausted after only 2 hours is far from normal even with ALS. I would see a doctor who will also screen for possible depression.
-
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, keep busy, and laugh a lot even if others disapprove. Relax.
-
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 is a Phase 3 trial that I think has merit.
Safety and Efficacy of TUDCA as add-on Treatment in Patients Affected by ALS
https://clinicaltrials.gov/ct2/show/NCT03800524 -
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.Â
-
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 for everything. They don’t seem to accept that there are variations with this disease. In my case it has been very slowly eroding my abilities but I can still physically move around but need help with some things. On the advice of my Neuro I agreed to a PEG tube. That was about 5 years ago and I have never used it. I don’t visit the ALS team any longer due to Covid and the fact that they can only evaluate you with their opinionated view and really can’t do much about it. I have found that most of the tests they perform only tell me what I already know. It is a big business like Google or Apple. They also don’t understand that age has a lot to do with how you do on a daily basis. I am nearing 80 years. Keep your spirits high Lisa, don’t let anything get you down.
-
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 today. The drug has not changed and there is more recent information although nothing concerning it has changed. Perhaps Dr. Bedlack’s low dosage will be well tolerated by most but it is an unproven treatment. I know some will say it helps them (or so they think) since the placebo effect is a powerful thing.
I have witnessed a whole lot of nonsense since 2006 the start of my ALS.
-
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:Â Â Â https://www.medicalnewstoday.com/articles/319927#risks-and-side-effects
-
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.
-
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 avoid pressure sores and is more comfortable. The same applies to any of this. Price is not a good indicator of value.
-
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 Toxicologisthttps://www.poison.org/articles/clenbuterol-unapproved-and-unsafe-201
-
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 avoid the medical establishment for as long as possible .
-
Thank you Jean-Pierre for the compliment!
-
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.
-
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.
-
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 to move at an interval you can tolerate and stay asleep with .
As for foam I have used only one , the Invacare Softform Premier which I really like . It is designed properly and does not present the problems of the other . There is a good video on YouTube.
I don’t remember the name of the air mattress , but many of them are junk from what I have noticed . Mine seems to be good quality . The key is to not stay in bed too long and change position .