WeirdTim

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

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.

Dagmar, what is your definition of exercise?

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.

<p style=”text-align: center;”>Test message</p>

Refuse to get it.

Was told yesterday that a PALS using RCH4 was removed from this forum. Is this factual?

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…[Read more]

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…[Read more]

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.

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.

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.

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.

This helps explain how legitimate the self reporting protocol those of us using RCH4 truly is.

https://rch4als.com/self-reporting-accuracy

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 C…[Read more]

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.

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, s…[Read more]

Also, instructions on how to post images would be helpful to many since uploading images doesnt seem possible. Thank you.

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?