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… 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… 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… 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… 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… 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… 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”… Read more

I just read Diana’s and Dagmar’s explanation of appropriate excercise for mice in the excercise study we had recently discussed. I thought “duh why didn’t I think of that😕 they’re mice”, then I thought of researchers in white coats trying to put mice on machines in a mini Planet Fitness and began to giggle. I had think of my mantra fast to… Read more

Just finished reading this article. I found it encouraging as it found mechanisms to explain the observations but as mentioned by Diana mice are not humans. I ran and swam regularly and did my best to continue after lower limb onset ALS was diagnosed. Within a few months I could no longer initiate runningn I confused swimming for about 2 yrs.… Read more

One more thought on fasiculations,spasticity, excess tone and hyper reflexes all of which I have lived with for going on 6 years. My Dr.s have come up with treatment ideas for all of it. Muscle relaxers, heart medication which is thought to slow voluntary nerve impulses, (and made a mess of my heart rythem), even offers to implant a baclofen… Read more

I’m a poster child for cramps, twitching, excess tone, and spasticity. My startle response is off the charts, sneak up on me and I’m on the floor. Mostly I just deal with it. I was on mexilitine which helped some at night but eventually my heart rhythms went crazy and I had to go off it. I have not used baclofen or tizanidin.

Got your note, Amanda. I am scheduled to see Dr Rup Tandem, UVM reseacher who conducted the trial of Relmasemitiv in which I was enrolled. Will certainly report what he has to say.

I usually get rejected based on being diagnosed more than 18 mos. I was accepted for Cytokenetics Reldesemtiv. I received the active. No one in the study had adverse side effects. Results were indicative of delay of progression but the statistics were not conclusive. I would love to have this drug since there is possible benefit & no risk but… Read more

Hi Dagmar , I just read your column on the drive thru speaker problems and am still chuckling😁 (I have to be careful not to guffaw because my diaphragm goes into spasms and I can’t inhale). I am just beginning to have speech problems and have been using some of the conversational hints you gave without realizing it.

Another drive thru issue… Read more

Just read Rick’s article on obtaining his Medicare approved chair. I’m following a similar path. I can still reposition and ambulate slowly using crutches or a walker but I’ve begun year 6 and know this will change. Last year I found a chair from Jazzy called a Jazzy Air on sale at a great price. Like Rick, I am over 6 ft. This is a chair for… Read more

As I mentioned before, within the last year I found that I could not rise from the floor. I finally got an appointment with a PT not related to ALS Clinic. The first visit proved that I will not regain ability to get up independently, however the 2 PT s who worked with me took me through all of the movements of rolling over getting on hands… Read more

Early in my diagnosis I attended a forum in which my neurologist was a presenter. He described all care as being palliative. I guess this has been my mind set throughout. Maybe not the best if you are determined to keep going.

Many thanks to Rick Jobus for sharing his knowledge of Medicare as it applies to pALS. I have printed out Rick’s articles an filed them all for reference when I need services.

I also have discovered that PALS are covered for any mobility asstive equipment needed to navigate the home as the need arises. (As I understand, many conditions require… Read more

Hi Dagmar,

The pALS I know and know of cover most of the spectrum of humanity, not just vets or athletes. The only thing I will say is I don’t know of any young pALS. everyone is 50 +. I was diagnosed at 69.

Plattsburgh is on the shores of Lake Champlain which is not the pristine Lake everyone thinks of. Since the 1800′ coal barges plied… Read more

Thank you Dagmar. I new you would be there as I begin dealing with yet another “new normal”.

Glad for the attention but I wonder if bundling ALS with all rare disease will help. Where I live ALS doesn’t seem so rare. I’m pretty sure I have lost more friends & aquaintences to ALS than cancer. For me, the realization began in 2012 (no idea in 2 yrs. I would get my diagnosis) with a local fundraiser “Raising Hope” begun in the name of… Read more

Next month marks 5 yrs. Since diagnosis. As mentioned by others, I began to worry about speech months ago. My wife an some close friends, when asked, insisted there detected nothing. This past wknd we attend 2 large parties & I had to talk over loud music and other voices. I knew I was having trouble enunciating, particularly lisping. When we… Read more

Not sure if I have a problem yet. I have been diagnosed 5 yrs. Occasionally , I feel that I am slurring and having a slight lisp. My listeners say the do not hear it that way. I’ve had the concern for months on & off. The majority of the time I don’t detect problems. Did not see a speech pathologist at my last clinic. I want to be sure she… Read more

Just reviewed your blog. I have always had a slump which began with a rapid growth spurt at a young age.  I was becoming concerned about ALS creeping into my core. After testing at clinic I was assured “not yet”.

Two good things, I push my butt to the back of a chair when sitting andk get up often. I check my posture often and straighten… Read more

Yes.  I get Parkinson’s like shaking in my arms, hands and legs.  It is usually while straining to do something or reaching. The neurologist says it’s due to spasticity which I have a lot of.