Amyotrophic Lateral Sclerosis (ALS) Support Group

Amyotrophic lateral sclerosis (ALS, sometimes called Lou Gehrig's disease, Maladie de Charcot or motor neurone disease) is a progressive, almost invariably fatal neurological disease. In ALS, both the upper motor neurons and the lower motor neurons degenerate or die, ceasing to send messages to muscles. This community is for those afflicted with the disease or who know a loved one who is.

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  • I just wrote a reply to the post Kennedy's Disease vs ALS. My husband was recently diagnosed with Kennedy's Disease. Originally he was diagnosed with ALS. His diagnosis of Kennedy's Disease has been confirmed by a genetic blood test. To us, it was good news. However, I am looking for other caregivers of men with Kennedy's Disease. I need support. I want to be able to discuss issues with...
  • I am still going through a series of tests and one they are checking for right now is Kennedy's Disease. I thought I would share this information as well for your review. It has the same symptoms as ALS though I believe this one is not a terminal disease. If you haven't been tested for this through DNA then it may be an option as well. WHAT IS KENNEDY'S DISEASEKennedy's Disease Questions &...
  • Roberts100

    ALS

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    I was diagnosed with this a week ago. I would like to know how fast it progresses.
  • HI! I am new to the group. I would like to talk to someone regarding the description of ALS. Unless this is for PLS (which I do not see mentioned). ALS is 100% terminal. There is unfortunately no "almost" in this case. Please have someone direct me to the appropriate person or if that person is seeing this I would be more than happy to discuss this further. It is very important that this...
  • ldab

    Just looking for support.

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    My fianc was recently diagnosed with a motor neuron disease with bulbar onset. Its been one week since diagnosis and we are struggling badly with hope and looking ahead. Days are filled with estate planning. Its been miserable. Just looking for anyone else who is struggling and could offer some support.
  • I do not have ALS, but am a member of the Daily Strength community. I have both Polymyositis and Lupus. However, I heard a report on ALS yesterday and thought I would share it with you, in case it might help someone here. It's called the Deanna Protocol, and was developed by a doctor whose daughter was diagnosed with ALS at age 23 (if I remember correctly). I don't mean to be intrusive. ...
  • Hello All, This is my first post on this site, I'm not sure how to properly do this but I'm asking for help from anyone willing to share their experiences with my and my family. In January my family and i found out that my dad has ALS. He's in his mid 60's and has always been a strong, hyperactive, independent, type-A kind of person. My mom and him had just returned from backpacking "The Way" in...
  • lightbulbgirl

    I hate ALS

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    I hope and pray there will be a cure soon.
  • burk11

    New investigation of ALS

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    As a therapist and student specialized in clinical psychosomatics, I decided to write my thesis about ALS. We are looking at ALS from a completely new perspective: if there is a connection between one's symptoms and certain events in the life of a patient.To be able to collect sufficient data and conduct a meaningful analysis, I have designed a questionnaire under the supervision of the...
  • IN MARCH I HAS LOST MY VOICE BUT COULD STILL SPEEK. LITTLE SWALLOWING PROBLEMS. ALL THIS TOOK PLACE AFTER A BAD VIRUS. I HAS SWOLLEN LYMPH NODE ON ONE SIDE OF MY FACE. AT TIMES OVER THE NEXT FEW MONTH MY VOICE WOULD GET BETTER AND THEN WORSE. I ALSO HAD WEIGHT LOSS FOR NO REASON. I WOULD EAT BUT WILL LOSE WEIGHT. THEN IN SEPT MY RIGHT TRICEPT BECAME HARD AND STRATED TWICHENING AND BECAME...
  • MGOhio

    wellness and awareness

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    https://www.youtube.com/watch?v=qgqsgXSJ7g8
  • Hi all,I have had problems now for about 8 months concerning my health, and recently started to have weird sensations in my calf muscles on both legs and tingling in hands, feet, and legs. I also have stiffness in hands, and feet. I feel like when i put pressure on my legs they feel weak, and sometimes i feel strain on them when walking. My doctor recently did a muscle test and told me my numbers...
  • I searched for over a month and then came across Stlhus Kitchens Warrington who beat everyone's price by a long way.
  • Anyone with ALS get any varying improvement from IVIG and any ability to wean off the ventilator briefly? My dads been on a vent 10 months but has been weaning slowly and the rehab has been inconsistent so I don't know if its them or him making it not work after 6 months of trying. He has had symptoms for 3 yrs but they thought it was MG before. Now they may stop physical therapy, breathing...
  • Xeria

    thoughts?

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    I don't know about you when I read something like this"The ice-bucket challenge has been getting a lot of heat, partly on the water wastage front, and partly because the executives at the American charity that started it, the ALS Association, have had their massive wages exposed like the nipple of a freshly-drenched starlet. The charitys president is on 200,000, its chief financial officer...