John Russell

Dr. Stromal at Dartmouth Hitchcock hospital in New Hampshire has done extensive work on a link between toxic blue green algae & ALS.

When I was diagnosed one of his researchers had me fill out an extensive questionnaire covering most of what I could remember of my life with particular emphasis on where I’d lived, sources of drinking water an…[Read more]

I’m touched by your story Diana. You have had so much taken from you by this awful disease. So many great plans and worse, losing ability to express your talent.

You are one of the most dedicated warriors against what ALS takes I know and I take personal inspiration to persevere from your efforts.

I love the photo you included and also must…[Read more]

I think I have mentioned this in other topics. I live in an area where per capita incidence of all neurological disease is higher than expected & ALS seem off the charts. Dr. Stromal of Dartmouth Hitchcock has been investigating this and I submitted a questionnaire and hair & nail samples. He is linking the blue green algae blooms on Lake…[Read more]

I went through the ROADS scale and felt it paints a much better picture of me, especially the last questions. I had no trouble deciding on 2 for questions regarding stairs & getting off the floor. I’m 75 but I have no trouble blaiming these deficiencies on ALS since they occurred rapidly. In some ways ALS is like old age occurring at warp speed.

We are planning our 6th end of winter trip to FL. We includes my wife who has struggled with Parkinson’s for 17 yrs.,my sister (cancer survivor) and our tireless friend, Carol without whom none of this would be possible. We have rented the same home each of the first 5 yrs. and paid to install grab bars & bought bed rails. This yr we could not get…[Read more]

As you know, Dagmar, I agree with you strongly. This is the best and most easily understood analysis of why I have read so far.

First of all do things you love and continue as long as you can. Second, your real friends will be there for you. Don’t refuse any invitation, they know your limitations and want you enough to help you enjoy whatever you have been invited to.

I keep myself involved, stay active & busy, excercise appropriately, and avail myself of physical therapy…[Read more]

It took about 10 months to get a diagnosis of PLS. I was having tripping & balance issues, fasiculations & weird foot movements while resting. When cold I walked like Frankenstein. Eventually I couldn’t run. Lots of cramping. First, rheumatoid arthritis, then spinal stenosis (thanks to the surgeon for not agreeing and doing an unnecessary back…[Read more]

My wife & I got shingles shots about 10 yrs ago. I understand that vaccine wasn’t any good. Dr.s we see haven’t presented information about the new shot & booster & I guess we haven’t asked. I’m somewhat paranoid about vaccines that involve the nervous system.

I’m dumb founded. FDA didn’t really understand that creeping paralysis followed by suffocation and death is a problematic and upsetting diagnosis. Also unaware that anything to even slow progression much less stop it or even gain back loss would be appreciated by pALS?y

Read your link Dagmar. Interesting. Of course if genetics were not involved everyone ex]posed to a trigger would be sick. I was surprised that the information in the link was presented several years ago.

Do you know of any articles descring these dozen or so types of ALS? I have long wondered if ALS is really a very specific diagnosis since function and longevity following diagnosis is so varied.

Pretty amazing! Now I will be waiting to see a trial where a therapeutic agent is administered using this technique.

As I have noted, for my wife and I friends have been more important than anything including the medical community. My wife has late stage Parkinson’s and has never been afraid to let people know what is going on with the disease. I soon noticed who were her friends and who were aquaintences. Surprisingly, some people you have known “forever” turn…[Read more]