weirdtim
Forum Replies Created
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Sheryl, once I provided the information and patient experiences from Patients Like Me to my nuerologist, she wrote a letter stating her and the hospital aren’t liable and the rest is history.
As far as availability, please read this from the charity and follow the links as they appear. https://www.als-new-drug.com/drug-availability-cost
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The dictionary states:
activity requiring physical effort, carried out to sustain or improve health and fitness
The issue is, any exertion has caused progression with me and many others. I am fortunate enough to still have some movement of my limbs and my wife helps me stretch to maintain flexibility, not to build strength.
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Dagmar, what is your definition of exercise?
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Henry, agree. When I was first diagnosed, I exercised and although it wasnt to the point of real exertion, my progression sped up. Stopped exercising and focused on stretching and progression slowed. Then when I started RCH4 my progression really slowed, almost at a halt now.
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<p style=”text-align: center;”>Test message</p>
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Refuse to get it.
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Was told yesterday that a PALS using RCH4 was removed from this forum. Is this factual?
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Please be aware even before I started on RCH4, any exertion I did that could remotely be labeled as exercise caused me progression. Know of several other PALS with the same issue. Now, my neurologist agrees and the only physical activity I do is stretching with my wife’s assistance.
If I were to tell another PALS on what not to do, exercise is one of those things as it is safe to tell PALS to not exert themselves using exercise, it is NOT safe to tell PALS to exercise.
Concerning the ALSU review of RCH4, I feel it was done to remove RCH4 from the vote on ALSU. Proof is the lack of details. After reviewing several other reviews from ALSU, NOT A SINGLE ONE closely resembles the RCH4 as far as lack of details. In fact there are several treatments still allowed to be voted on because ALSU doesnt have details. The RCH4 review was done by ALSU to remove RCH4 from the voting list, very fraudulent and makes us question the accuracy of their other reviews.
Please read the RCH4 rebuttal here:
https://als-new-drug.com/alsuntangled-review
Moderators I ask you to keep an open mind and listen to those of us using RCH4. Almost every forum has removed us and silenced us for simply providing our personal accounts. In fact we want nothing more than for all PALS to be using RCH4 because we personally know it works as an effective treatment, safely.
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Also, we as PALS need to realize that what is good for one of us is not good for the other. This applies to exercise, food, supplements and even medication. To judge a fellow PALS for what works from their experiences but doesn’t line up with your own regiment is short sided and not helping any of us.
For me, I eat 2,000 to 4,000 calories daily and do nothing that could be considered exercise. And….since April 2018 when I started RCH4 I’ve maintained weight just great.
We cannot continue to purposely discredit each other. We need to support each other.
It’s not like someone who has no connection to ALS is talking up RCH4, it’s people diagnosed with ALS. This is an important point.
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Still have psoriatic arthritis and I was not by a car with ALS symptoms within one month at 41. I also have another autoimmune disease. It causes pigment loss in my skin.
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What I’ve done all my life is stretching without trying to maintain or build muscles. I was diagnosed with psoriatic arthritis at age 7.
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From personal experience before and during RCH4, stress of any kind whether physical or emotional or mental are bad for us. A lot of us have trouble maintaining temperature of our body which causes stress. My wife helps me stretch several times a week but nothing to build or maintain muscle.
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May not but a.vitamin D deficiency is common in PALS, including me. Will reduce energy.
After I started taking a prescription vitamin D pill, more energy and feel better.
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This helps explain how legitimate the self reporting protocol those of us using RCH4 truly is.
https://rch4als.com/self-reporting-accuracy
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Started on RCH4 in April of last year after being diagnosed in April of 2017. Like many of you, I read about it for months and then contacted many who were using it via private message on forums. Then, I went to http://www.als-new-drug.com and applied for it. My neurologist approved me to use it after I provided information from the RCH4 Research Charity.
I have never been charged a penny for it. I do a injection twice a week into a muscle. My progression has decreased by almost 80% in the last year compared to the year prior. No side effects.
The RCH4 Research Charity chose to take a different approach in trying to get the drug to market. Instead of waiting for years to collect clinical efficacy and safety data, they instead have the drug away to tho s of us who requested it with a confirmed ALS diagnosis. This has allowed them to receive a good amount of data in a very short time period. The drug is ready to see a Phase II/III trials. The drug is patented.
There is a non disclosure agreement we RCH4 Patients signed so we cannot disclose some information. This is for a few reasons, none of which are malicious. One of the big reasons the exact MOA or exact chemical composition is not provided is to not encourage counterfeit versions. In fact ALS Worldwide a few years ago tried to sell counterfeit RCH4 but was served with cease and desist orders by the RCH4 Research Charity.
The RCH4 Research Charity has been nothing but professional, compassionate and shared openly a wealth of information. We need to embrace this treatment as I know several whose progression has ceased for several years now.
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Was just informed that this forum does not allow images. You may want to state that somewhere and remove the image icon from the Visual portion of this reply box to avoid confusion.
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Also, instructions on how to post images would be helpful to many since uploading images doesnt seem possible. Thank you.
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Just a suggestion, it is tough to see topics and such because of the info bar to the right on my tablet. Is there another format you can use to remove the info bar to the right to increase the size of topics and posts?
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The only thing I do is stretching to reiman limber with help from my wife. Any stress, emotional or physical is very bad for us. In the mornings I lay in bed and then sit in my recliner during most days.
Been using RCH4 for one year now and the only measurable progression happened directly after I put my body under stress.
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Sorry, but there is a lot more to posting images on the forum you are using. The image needs to be loaded on a third party image site like Photobucket first. Then, an Image Desription and then the size of the image Very tedious and time consuming and tough for most to understand.
Using a 10″ tablet to view as many of us do, the menus, search, profile information to the right causes for small font and it is tough for many of us to read.
If you want us to participate more, the above should be addressed. Just trying to help you