[John]

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 aquatic recreation. I also gave hair & nail samples.

[John]

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 complement you on your red Drive Euro which is identical to my red Drive Euro?

Thanks again for sharing your story.

John Russell

[John]

 

 

[John]

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 Champlain & other smaller bodies of water to this. Recently ALS News Today published a study where BMMA, a blue green algae toxin, was given to monkeys and caused motor neuron damage which was mitigated by large doses of l-serine. A study has begun treating pALS with 15 g l-serine 2 × day. Since this is a common supplement I would be interested in hearing from any pALS who take it.

[John]

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.

[John]

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 the same house but are moving to one in Vero Beach which friends have been in for January & February so we know it will work. We’re booked through 8 April.

What I want t o share is wheelchair use for the flights. Though my wife & I have some mobility we really need chairs. I have my own, a nice light KI folder which I got while recovering from a broken ankle 3 yrs ago. I get in my comfy chair at arrival and don’t have to leave it till I board. At no cost it goes with the luggage. On arrival it is brought to the door (pretty much after the plane empties but that’s OK) I sit & stay till Carol shows up with the van we rent. Definitely beats hoping the airline shows up with something.

[John]

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.

[John]

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 each week. I try not to feel cheated and enjoy the life I still have. I hope to keep on keepin’ on till I can’t, whenever that may be.

[John]

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 surgery). Finally based on several MRI’S and an EMG, It was PLS diagnosed by a neurologist specializing in MS then confirmed by neurologists at the ALS clinic. This was July 2014. In December 2018 after discussing with a visiting neurologist I was given another EMG and a diagnosis of ALS. I still walk (sort of) with forearm crutches or a rollator. I’ve lost a little strength and coordination in my hands & arms & have slightly affected speech. I still drive (hand controls) and take care of my own needs (have to since my wife has late stage Parkinson’s). So it goes one day at a time.

[John]

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.

[John]

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

[John]

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.

[John]

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.

[John]

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

[John]

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 out to be aquaintences and some people you got to know recently turn out to be friends. The aquaintences soon drift away when you no longer contribute to their fun. The friends understand and acknowledge your fight, then continue the relationship making any necessary adjustments to include you in their lives.

When I was diagnosed with ALS more than 5 yrs ago I followed Judy’s lead and told everyone what was wrong and what could happen. In almost no time, aquaintences disappeared and friends let you know they were there for you. These people are the ones who give me quality of life in spite of my predicament. These people are why we are still in frozen upstate NY and not in Colorado with our daughter or in Florida with the snow birds. (We have escaped to Florida briefly each yr thanks to the extra effort of friends who made the necessary accommodations to have us along).

 

[John]

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 stop before my wife became alarmed that frontal lobe dementia had finally set in.?

[John]

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. My kick became useless so I quit laps but kept up aquacise until negotiating changing in the locker room became too much.

I still believe strongly that excercise slows progression possibly explained by some of the observations in the mouse study but also by maintaining a positive attitude. Currently I pedal a spin bike or an adult trike when I can get outside. I use hand weights and therapeutic putty for arms & grip and I have a session with physical therapists 2X/wk. I walk slowly and awkwardly with a rollator or forearm crutches & continue to try to maintain the ability to rise from a chair.

I am always glad to read of positive indications for excercise since, in 2014 when I was diagnosed, there was little encouragement to do so.

[John]

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 pump and boots injections. My response has been no to all. These treatments are palliative and will not retard progression. However difficult coping with all this uncontrollable movement is I feel that it is contributing to the muscle at least staying alive. Meanwhile I am a believer in keep yourself moving as best you can by persuing excercise and daily activity as best you can. I’ve slowly lost a great deal but I can still walk slowly with a rollator or crutches, take care of my personal needs and dressing,prepare simple meals, drive and enjoy many activities with friends. For me the best thing has been to remain positive, work around your symptoms and don’t bother with treatment which calms muscle just to promote comfort.

[John]

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.

[John]

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.

[John]

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 I guess it won’t be available.

[John]

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 for me is holding on to money and the drinks with my failing left hand. After putting the van in park an letting go of the hand controls I pick up pre arranged bills from the console with my right hand carefully make a pass to my left and stick it out the window telling the cashier to keep any coins making up the change and hope I can grab any bills that are returned. I tell them to hold on to the drink cup till I say OK. I have stopped trying to use the pneumatic tube at the bank.

I think we will eventually have devices to understand and translate our slurred speech in conversation.

Thanks for a funny and useful article.

[John]

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 tall folks and I was able to get it with a 19 inch seat depth. It’s called “air” because it rises 10″ at the touch of a button. I love to be face to face in a group and to be able to reach things that are high.  This is OK now but after several hours I need to get out of it.  I intend to donate it to MDA or the ALS Assn. when I can no longer use it.

My questions are when is the right time to begin getting a Medicare ALS appropriate chair and also do you have to work with a nearby medical equipment supplier.  I have looked at Permobil chairs and they are what I want as they do everything Rick describes and are quite compact. It seems like they will work through Medicare with you. Does anyone have experience either with Permobil or a particular manufacturer rather than a general supplier of durable medical equipment?

[John]

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 & knees, standing on knees and rising from a knee. They evaluated how much my strength contributed to each movement vs. how much they assisted. They were very positive even though it is agreed that I won’t rise independently. It felt great to go through the movements and get positive feedback. These 2 PT s are working with at least one other ALS patient and believe that they can help prolong function by moving you in ways you can not do alone. I am going for weekly visits and I think it will help both mind and body.