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    • #14196
      Amanda
      Keymaster

      From the NIH website https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Amyotrophic-Lateral-Sclerosis-ALS-Fact-Sheet

      “Who gets ALS?

      In 2016 the Centers for Disease Control and Prevention estimated that between 14,000 – 15,000 Americans have ALS.  ALS is a common neuromuscular disease worldwide. It affects people of all races and ethnic backgrounds.

      There are several potential risk factors for ALS including:

      • Age. Although the disease can strike at any age, symptoms most commonly develop between the ages of 55 and 75.
      • Gender. Men are slightly more likely than women to develop ALS. However, as we age the difference between men and women disappears.
      • Race and ethnicity. Most likely to develop the disease are Caucasians and non-Hispanics.

      Some studies suggest that military veterans are about 1.5 to 2 times more likely to develop ALS. Although the reason for this is unclear, possible risk factors for veterans include exposure to lead, pesticides, and other environmental toxins. ALS is recognized as a service-connected disease by the U.S. Department of Veterans Affairs.

      Sporadic ALS
      The majority of ALS cases (90 percent or more) are considered sporadic. This means the disease seems to occur at random with no clearly associated risk factors and no family history of the disease. Although family members of people with sporadic ALS are at an increased risk for the disease, the overall risk is very low and most will not develop ALS.

      Familial (Genetic) ALS
      About 5 to 10 percent of all ALS cases are familial, which means that an individual inherits the disease from his or her parents. The familial form of ALS usually only requires one parent to carry the gene responsible for the disease. Mutations in more than a dozen genes have been found to cause familial ALS. About 25 to 40 percent of all familial cases (and a small percentage of sporadic cases) are caused by a defect in a gene known as “chromosome 9 open reading frame 72,” or C9ORF72. Interestingly, the same mutation can be associated with atrophy of frontal-temporal lobes of the brain causing frontal-temporal lobe dementia. Some individuals carrying this mutation may show signs of both motor neuron and dementia symptoms (ALS-FTD). Another 12 to 20 percent of familial cases result from mutations in the gene that provides instructions for the production of the enzyme copper-zinc superoxide dismutase 1 (SOD1)”

      So, this sounds to me that each specific type of genetically linked ALS should be treated differently based on how that mutation disrupts the body. I know from the research I participate in focusing partially on the SOD1 mutation, there is some link to with the SOD1 mutation  protein deposits in a body. The C9 mutation (C9orf72) that was discovered in 2011 was the first pathogenic mechanism identified to be a genetic link between familial FTD and of ALS.

      I’ve seen several post that describe ALS as a catch all for motor neuron diseases as there appears to possibly be multiple causes that have the same end results.

      What are your thoughts? Is this common sense or am I over thinking, again? If you are a pALS, is your sporadic or familial?

    • #14245
      Dagmar Munn
      Keymaster

      To our forum members – – A cautionary clarification:

      The website shared (above) by phillipjax is of his own design and choice of content, and the information should be read with a healthy amount of caution.

      Yes, it contains a vast amount of information on existing ALS therapies and trials – – but nothing that cannot be found in existing news articles and trusted websites. This type of “information dump” looks impressive at first glance, but I found some of it was biased, negative and it felt as if I was being shouted at.

      For example, under diets the Ketogenic is listed, with a 2013 reference, yet (according to Dr. Bedlack) this is not recommended for ALS patients. Why aren’t other diets listed? Paleo, vegetarian, Mediterranean, etc.? Under exercise, the comments are biased towards the negative. Actually the link to the opinion by Massachusetts General shows that they have a quite positive opinion of exercise for ALS. Another area: sleep. Why not mention simple relaxation techniques, aromatherapy, etc. along with the strange “bright light therapy” and  “frame tracing”??

      If you choose to publicly share a site such as this, please be open to constructive critique. Our members deserve quality information.

       

    • #14247
      Diana Belland
      Participant

      Dagmar,

      Thank you so much for your comment.

      I have read the entire website built by phillipjax several times.   I admire the author’s industry and diligence in researching a number of treatments and therapies.  He lists himself as a caregiver, and I am sure his work is much appreciated by his family member or friend who has ALS.   But I came away with the same conclusions you have expressed.  I was surprised to read some statements which sounded like personal opinions.

      The site includes no information about the author’s credentials, or his research, medical or scientific background.  In the spirit of a constructive critique,  I would like to respectfully suggest to the author that this information be made available on the “home page” of the website.

      Thank you.

    • #14251
      Dagmar Munn
      Keymaster

      I’d like to share with everyone an excellent website maintained by one of our newest members, Diane Huberty (who has been living with ALS for 25 years!) “ALS from Both Sides” http://www.alsfrombothsides.org/

      Diane offers practical advice and tips on how to navigate and live with ALS.

    • #14280
      Dagmar Munn
      Keymaster

      PhilipJax,

      Your reply has been published.

      Our forum members are certainly welcome to explore your website.

      I agree; that we happen to disagree with each other on this matter.

      BTW: there exist many clinical trials using aromatherapy, this is but one example:

      https://clinicaltrials.gov/ct2/show/NCT03304938

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