@johnjr
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John Russell posted an update 2 years, 2 months ago
I was prescribed 200mg mexilitine before bed for cramping. When I read the plan for the study discussed in ALS News Today I upped my dose to 600 mg. I took this for several mos. I developed bradycardia, pulse rate falling to 35 to 40 bomb. A cardiologist ordered a 24 hr heart monitor which confirmed bradycardia and also very frequent PVCS. My…[Read more]
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Danielle Uskovic and
John Russell are now friends 2 years, 9 months ago
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John Russell replied to the topic Risk Factors in the forum Research Topics 2 years, 9 months ago
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]
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Kathryn F. Kennedy and
John Russell are now friends 2 years, 10 months ago
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John Russell replied to the topic ALS Awareness Month Spotlight: Diana Belland in the forum ALS Awareness Month 2 years, 10 months ago
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]
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John Russell replied to the topic Risk Factors in the forum Research Topics 3 years ago
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John Russell posted a new activity comment 3 years ago
I was referring to Relmasemitiv. I was in phase 2 of that & have wanted it ever since I discovered I received the active. Thinking seriously of l-serine but not sure I want to do 30 g/day. Thanks for your advice on Amazon.
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John Russell replied to the topic Risk Factors in the forum Research Topics 3 years ago
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]
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John Russell posted an update 3 years ago
I was part of the study & received the active. Wish I could have continued therapy. My speech is now deteriorating along with other functions. Don’t understand why continuing therapy is not offered to participants when serious side effects are not seen.
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Could you purchase L-serine on Amazon and continue therapy without being part of the study?
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I was referring to Relmasemitiv. I was in phase 2 of that & have wanted it ever since I discovered I received the active. Thinking seriously of l-serine but not sure I want to do 30 g/day. Thanks for your advice on Amazon.
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John Russell replied to the topic ROADS vs ALSFRS-R: Do you know about this new ALS rating scale? in the forum Research Topics 3 years ago
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.
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John Russell replied to the topic Travel Tips & Woes in the forum Living With ALS 3 years ago
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]
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John Russell replied to the topic A Deep Dive into the Issues of ‘ALS and Exercise’ in the forum Research Topics 3 years, 2 months ago
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.
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John Russell replied to the topic Calling all pALS 1+ years with ALS: Let’s help our newly diagnosed members in the forum Living With ALS 3 years, 2 months ago
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]
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John Russell replied to the topic Was your initial diagnosis correct? in the forum Diagnosis Information and General Questions 3 years, 2 months ago
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]
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John Russell replied to the topic Have you had (or plan to have) a shingles shot? in the forum Living With ALS 3 years, 3 months ago
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.
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John Russell replied to the topic Groundbreaking ALS Voice of the Patient Report Submitted to FDA in the forum Research Topics 3 years, 3 months ago
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
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John Russell replied to the topic NPt520-34 Was granted orphan drug status! in the forum Research Topics 3 years, 3 months ago
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.
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John Russell replied to the topic NPt520-34 Was granted orphan drug status! in the forum Research Topics 3 years, 3 months 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.
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John Russell replied to the topic MRI Guided Focused Ultrasounds Can Safely Open The Brain-Blood Barrier in ALS Patients in the forum Flash Briefings 3 years, 3 months ago
Pretty amazing! Now I will be waiting to see a trial where a therapeutic agent is administered using this technique.
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John Russell replied to the topic pALS Roundtable: What to say to friends and family about your ALS in the forum Living With ALS 3 years, 4 months ago
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]
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