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Thread: Why Me

  1. #1
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    Why Me

    Good morning everyone,
    I hope today finds you in finer fettle than yesterday.

    I joined only yesterday with an introductory post. Now my post topics have to be compartmentalised, I thought I would start here. Not least because it has the biggest audience right now.

    I had no emotional issues following my diagnosis, as I had come to terms with my own mortality some years ago.

    I have no fears of what is to come as I deteriorate into the stage that requires the help of others.

    I am of course concerned how my emotions will be when I can no longer complete my business in the toilet without assistance. Perhaps by then I won't mind, as long as someone is helping.

    I am not terribly disappointed that they haven't found a cure yet, as I have had a full life and experienced everything I wanted to.
    In fact just last weekend I drew up a mock bucket list, and could only make two entries.
    1. I never did get to see ancient Rome.
    2. I would really love to see my teenage sweetheart one more time.

    So you see, there is little that I will pine for. But,,,,,,

    I am going to struggle with not knowing what caused this disease to visit me.

    I've read thesis after thesis by eminent scientists looking for cause or just an indication. In fact throughout my research on this subject all I have gleaned is 'Possible Connections'. Dodgy genes, Glutomates and such. Or 'The Environment'. Clearly this is medical speak for 'I haven't got a scooby'.
    Understandably no entity is going to throw large money at finding the cause, when they haven't found a cure. The cure, that's where the money is for the pharmaceutical profession. So no hope there.
    Governments

    That leaves but one entity who could take on this quest and not tire in the process.
    Us. The affected.
    ~~~
    In America there are currently approx. 12,000 from a population of 250,000,000ish. That's a percentage per capita of 0.00048
    In UK there are conflicting numbers. Some say 1-300 others say a total of 5000 from a population of 70,000,000ish
    0.00071
    A marked difference in % per capita. 50% in fact. WHY

    What causes such a steep hike in numbers. Is it because of our geographical position. Is it because we don't consume the same quantities of red meat as do they. Is it that they have better air?

    No-one knows. And no-one is asking. I shall.

    When I was diagnosed, I launched a barrage of past deeds at the specialist in an effort to identify a cause. None were entertained. Not even my smoking. That did surprise me.
    But what stock can you put in such a claim when the specialists don't know themselves. Nothing can be dismissed , and nothing can be eliminated without investigation.
    ~~~
    There are those that are of the opinion that we as a species have not evolved our digestive tract sufficiently to digest dairy products.
    I put it to you. If we are to believe in that hypotheses. Surely we can take it little further and consider that if our internal system hasn't changed since we were tree swingers. Could there be something present still in a chimps natural diet in the wild, that we dismissed from our plate millennia ago. Or a mineral or vitamin. Vitamin K has been heralded as the miracle vitamin missing from our dietary table for years. What else is missing. After all we have only recently discovered cannibalism among monkey groups.
    ~
    If it's not something we do, or something we eat. Could it be something we don't do or eat any more.

    I want to at the very least, get people thinking about this topic. It may not help us, but until we establish a cause we cannot establish prevention.

    What say you, my esteemed co-conspirators, should we look to ourselves for answers.

    B.

  2. #2
    Regarding the U.S. U.K. difference could that be down to the cost of healthcare? A lot of people will have no insurance and limited access to health services.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Ben,

    Just to clarify the figures you posted above;

    The prevalance of ALS in both the US and the UK is fairly similar, hovering around 5-7 people per 100,000

    In the US, there are approx 15,000-21,000 live cases of ALS at any one time (US Census data) and the population of the US is 327million (US Census data), not 250million as you suggest.

    The 1 in 300 figure you quote is one's lifetime risk of developing ALS.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  4. #4
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    Hi Ben

    I think the question 'Why me' is the infinite question of the universe, and yet there never seems to be an answer.

    Here is some more facts directly from the ALS Association in the US.

    CCxox

    *****

    Based on U.S. population studies, a little over 5,000 people in the U.S. are diagnosed with ALS each year. (That's 15 new cases a day.) Every 90 minutes, someone is diagnosed with the disease and someone passes away from it.

    It is estimated that at least 16,000 have the disease at any given time.

    Most people who develop ALS are between the ages of 40 and 70, with an average age of 55 at the time of diagnosis. However, cases of the disease do occur in persons in their twenties and thirties.

    ALS is 20 percent more common in men than in women. However, with increasing age, the incidence of ALS is more equal between men and women.

    About 90 percent of ALS cases occur without family history. The remaining 10 percent of ALS cases are inherited through a mutated gene. On average, it takes about one year before a final ALS diagnosis is made.

    There are several research studies – past and present – investigating possible risk factors that may be associated with ALS. More work is needed to conclusively determine what genetics and/or environment factors contribute to developing ALS. It is known, however, that military veterans are approximately twice as likely to develop ALS.

    Half of all people affected with ALS live at least three or more years after diagnosis. Twenty percent live five years or more. Up to 10 percent will live more than 10 years.

    Only four drugs are currently FDA-approved to treat ALS: Riluzole, Nuedexta, Radicava, and Tiglutik. Nuedexta is approved to treat pseudobulbar affect, difficulty with emotional control, including inappropriate laughing and crying, which impacts some people with ALS.

    The estimated cost to develop a drug to slow or stop the progression of ALS from an idea to an approved drug is between $2 billion and $3 billion.

    There is some evidence that people with ALS are living longer, at least partially due to clinical management interventions and possibly other compounds and drugs under investigation.
    .

  5. #5
    Forum Member Lynne K's Avatar
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    Hi Why me. I, like you read everything that I can get my hands on. I have the C9ORF72 gene fault. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  6. #6
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    Thank you guys for your replies,
    I can't say I feel better for the accurate numbers, it is still miserable reading.
    Lynne K,
    You say you have read everything. I won't question that as you certainly have acquired a mass of knowledge. Given your searches, and the fact that they have identified your cause. Is there nothing out there for you at least. Stem cell or gene replacement/therapy.
    Is it all about money?
    If I was a Rothschild with my $1.4 trillion personal fortune. Would there be a cure before breakfast.

    Today is the first day of expressed anger for me. I lost it and trashed my bedroom. It looks like I've been burgled. I'm not sure if it's the sudden realisation that it is not all just a dream. Or, the fact that I have now spent so many hours researching the cause of this poxy disease, and I've got nothing. Brick walls, dead ends, and blind alleys.
    ~~
    The 'Environment' is what I have been given as a cause. If it is, it doesn't need a scientist to find out what in my life I should have avoided.
    ~~
    For those who have been there done that. Am I wasting my time????

    I had better clean this room up.

    MeToo.

  7. #7
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    Have you gone for the full genome route to see if your family tree is a cause?

    You will want to know whether it’s sporadic or familiar MND and then whether it’s ALS or PLS or another variant

    Above all be positive when you can

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