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Reply To: Does ALS influence how you vote?

Optimist — Tue, 30 Jan 2024 23:54:00 +0000

My brother has ALS since 12/22. I will not vote for any candidate for any office who suggests any cutbacks in healthcare coverage and will prefer a candidate who seeks more along the lines of universal care. One thing I would really like to see for pALS is better and broader support for in-home care, home modifications, and better drug coverage.

Reply To: Does ALS influence how you vote?

PaulB — Sun, 28 Jan 2024 13:45:26 +0000

I tend to be someone who does NOT vote along ‘party’ lines. Rather, I look at the candidates as a whole. But, that said, a candidate who would diminish the vigor at which we advance our science to combat disease would not get my vote.

I am a PALS, but I would consider that I’m thinking about not only myself (as a bulbar-onset patient, I don’t have much time left anyway…), but rather I consider what it would mean for my family and community in the longer-term. As there is no proof that ALS is something which can be ‘passed down’, the chances my children contract ALS is perhaps equal to anyone else in society. BUT, we do not know the cause of ALS. (Let alone a cure.) So, was the cause of it something we have done as a society? Don’t know.

Reply To: Does ALS influence how you vote?

Richard L Wheeler — Sat, 27 Jan 2024 00:50:51 +0000

No change in my vote

Does ALS influence how you vote?

Amanda — Thu, 25 Jan 2024 13:37:54 +0000

In the United States, we have a presidential election in November 2024.

Does legislation regarding ALS and other rare diseases influence your vote?

What legislation or policy do you believe helped pALS and others in similar situations?

What would you like to see change in the government to help pALS and others with rare diseases?

Please feel free to add information about policies in other countries/areas! Just be sure to tell us where you are located. We have members from all around the world, so the more information the better.

Please be respectful when responding.

Reply To: Interesting Article. Thoughts??

Dagmar — Tue, 29 Aug 2023 17:33:57 +0000

Indeed interesting!

Although they are still at the stage of using animals (ALS mice), the concept of introducing motor neurons into the muscle and having them replicate – – is great! We’ll have to wait and see if this transfers over to human tissue and motor neurons.

Interesting Article. Thoughts??

Eric — Tue, 29 Aug 2023 13:16:55 +0000

https://neurosciencenews.com/als-neuron-grafting-23806/

Reply To: Another theory! Causes of ALS

Kathleen B (Katie) — Fri, 20 Jan 2023 14:39:29 +0000

Thanks Steven W—right you are—another theory for the mountainous pile—but at least that concept of personality trait theory made me laugh at some points!

Reply To: Another theory! Causes of ALS

Steven Witt — Thu, 19 Jan 2023 14:44:52 +0000

Yes, there are countless theories on why sporadic ALS develops, but I believe mine is correct. I’ve been writing an online journal since my diagnosis in May 2022. This month’s edition of, No Leg to Stand On discusses the issue at hand…keep reading

Reply To: Another theory! Causes of ALS

Michael J. Morris — Wed, 18 Jan 2023 04:58:34 +0000

I am one that had symptoms following severe allergic reaction to third Moderna shot for Covid. I reported to CDC VAERS which is vaccine safety , data accumulation. This data is accessible. Check it out.
But, I check many boxes for environmental exposure, military work, heavy exercise, etc., and general anastesia for surgery two weeks prior to vaccination.

Reply To: Another theory! Causes of ALS

Kathleen B (Katie) — Wed, 18 Jan 2023 02:15:41 +0000

WOW!!! What a lot of theories & input!!! As for the ORIGINAL start piece—I live in MI—lifelong resident in both rural and metro Detroit area. Yes, between agriculture & industry in this state, there is a LARGE study of the environmental impact on land & water—being conducted thru University of Michigan Research. Yes, MI has highest % of sporadic ALS cases…and expected to rise in coming years. Lake Michigan, although very beautiful, is 4th most polluted lake in the nation. Boating. Fuel & waste dumping; massive mansion homes on the lake all emptying this personal waste (ie sewage) directly into the nearest big lake. Agricultural land also very toxic—down to the water table with things like arsenic (used as crop pesticide in 1920’s-30’s); massive applications of herbicides and fertilizers over many decades to increase crop production & product; numerous hormones & antibiotics given to livestock for diseases & bigger, faster growth. And then there is industry! All sort & manner of auto industry & other manufacturing have relentlessly dumped into landfills and retention ponds. There IS NOT much concern for the environment until recently —and it may be too late for so many. I was not an avid athlete, farmer, military, or genetically pre-disposed…but I am now a person with ALS. I worked 40 years in education, in MANY old & structurally questionable buildings with boiler heating systems, asbestos floors, lead paint, mold, mildew, lead pipes water systems, etc.—both rural & urban & suburban settings! Unbelievable how many schools are not healthy places, but nobody really looks or cares. Teachers continuously teach —and not just 9-5, but weekends, evenings & summers,too—because we know the future depends on our efforts in the present—(no worker has gotten where they are without having had several good teachers along the way I say). The point is: this disease is likely a product of toxic exposure of all sorts that affect individual systems that have some kind of sensitivity to one toxin or combination of things. I did appreciate most in other comments the link to things like shingles & other nerve viruses…why are the researchers & ALS clinics not keeping track of these things? I am quite tired of the dr’s simply ‘tracking progression’ at each visit—waiting 30-40 years more for understanding & breakthrough treatments/cure is NOT helpful or encouraging. As was recently a forum topic idea on ‘goal setting’, it was my input that the entire ALS community needs to band together & get states to mandate registries for reporting diagnosis & step up the National Registry ability to have an ACCURATE count—this may not at all be as ‘rare’ as it seems to be presently!