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We just tell them I have an incurables disease call ALS. It causes muscle weakness. My brain and spinal cord signals are not in are not working as they should. There’s only treatment to slow the progress. And If you want to know more about ALS – just Google it. People will look at you so pitifully.

Unfortunately, no one understands what ALS is, when I explained ALS to people I said: is like a three-prong electric cable, The outside is the muscles cover by three neurons, when this neurons get short circuit thy in progress kill the muscles .
It happens so many times that health care, or nurse, don’t have any knowledge what they doing.…[Read more]

Sorry you are having this experience. Frankly, I would change doctors and tell this one why.

I too keep answers simple—yet informative—and totally unlike what most of the ALS ‘fact sheets’ list.
My generic explain involves mention that I have a disease called ALS, affecting all my skeletal muscles, which will eventually stop working,  because nerve messages from my brain & spinal cord that send signals to cause movement are becoming…[Read more]

Thank you Mary for your wise words for myself & Eric to benefit from as we make this journey with our spouses.
I too hope you’ve another neurologist Eric—and, if you are at an ALS clinic, there must be a director—and a social worker —who should both be informed by phone or email of your experience. It is very unprofessional and totally not what an…[Read more]

Eric,

I had an idea that I am testing it is called LENS

The concept of Low Energy Neurofeedback (which is a completely unique form of “brain optimization”) was first introduced by Len Ochs in the 1980s. After introducing his ideas to several national forums, he established Ochs Labs to further develop and hone Low Energy Neurofeedback con…[Read more]

My friend with ALS limb onset is now having increased breathing difficulties, uses TRILOGY at night and some daytime.  Most recent FVC is 57% which prompts the conversation of gastrostomy tube.  He is also losing weight.  He has a lot of difficulty coming to grips with the decision to have a feeding tube, saying he does not now need it, un…[Read more]

Fascinating articles. Although sample size is small it appears that acupuncture does not make the condition worse. Any stabilization and improved QoL seems worth the effort. Thanks for sharing. Will add this to list of questions for next appt with neurologist.

Diagnosed only a few months ago. Bulbar. Voice is getting weaker. From a family of ALS, no one lasted more than a few years. I have no illusions about the future. Have a few advance directives. That said I will reserve the right to override myself if it want. Do not think I will but you never know. My faith sustains me. I feel the love and support…[Read more]

@Elizabeth,
Your comment really hit home today. I was messaging a friend who has ALS and has lost many of their abilities (to walk, eat, ect.) and I worry because I don’t want to sound insensitive or hurtful. I know that this can happen out of sheer ignorance at times. I try to focus on anything positive and encourage pALS to do the same;…[Read more]

When anyone attempts to comfort me by stating that slow progression is better , . Though well meaning, offers me little comfort. Any progression is dangerous and unpredictable with this disease. I fear waking up and not be able to stand on my feet. Knowing full well that it’s just a question of when.. I like many others don’t want to be kept ali…[Read more]

Has anyone read the article from the web site below? I think it’s posted by National Institute of Health.  Appears acupuncture provides quite a bit of relief.  I posted a second article as well

Has anyone tried the type of acupuncture discussed in these a…[Read more]