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Thread: MND diagnosis and link to heavy training

  1. #1
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    MND diagnosis and link to heavy training

    Good afternoon all

    I am 39 years old and have recently been diagnosed with MND.

    Having been heavily involved in health and fitness from day one I have always trained intensively and frequently most days of the week (if not all) and still do.
    I would like to reach out to people in a similar situation as it seems to be a very common phenomena, the link between MND and heavy training sportsmen!!
    It led me to read an excellent e book by Mike Freeman which looked at the link between B12 deficiency and heavy training sportsmen (for example Lou Gehrig).

    Being a nutritional therapist I have always felt that with the constant demands of heavy training and its tolls on the body it can't just be a coincidence that heavy training individuals are being diagnosed with MND!!

    It must be a nutritional depletion from heavy frequent training which triggers the switch to MND. At the same time I still don't believe that only 5-10% of MND patients have the genetic link. I think that as more research takes place they will realise that this genetic link is much higher and is influenced or triggered by environmental factors (possibly nutritional depletion from heavy training).

    Would appreciate any people who have a similar lifestyle to mine to step forward and speak out of their experience.

    Keep up the good work.

    Best wishes

    Alex

  2. #2
    Forum Member Barry52's Avatar
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    Hello and welcome to the forum Alex.

    Worldwide extensive research into MND does not show any direct link with the disease and extreme exercise. Many factors such as environment, lifestyle and genetics are said to be involved. It is a coincidence that some sportsmen/women are diagnosed with MND.

    When did your symptoms start and what are they? The former edict of don't exercise with MND is now being replaced with gentle exercise without stressing your body.

    Best wishes,
    Barry
    Life is a journey, not a destination.

  3. #3
    Forum Member Terry's Avatar
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    Hi Alex and welcome to the forum;

    I think that Mnd is more common in sports or heavy trained people and similar to you think that some of us have slightly defective genes that make us more likely to get it.

    I don't know about being B12 or other deficiencies as many of us had good diets as well.

    I have not studied things and these are my uneducated feelings.

    I think that it's good to continue exercising but not to do it to destruction or over stress things. Keep everything moving through there range of movement.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

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    Alex:

    Both your points resonate with my experience.
    Like you (and many others) I played high-end sport my whole life.
    Prof. Pamela Shaw of Sheffield University has a research project and has data that strongly supports the exercise-MND correlation. Her words to me were "couch potatoes never get MND".

    In my mind the 5-10% is a red herring. The genes are likely much more prevalent. Research shows that many so-called 'sporadic' MND cases test positive for known genes such as SOD.

    I am of the view that as more genetic strands are discovered that !0% will grow to 50% percent if not 100% in the fullness of time.

    My conclusion on the exercise-MND link is as follows: We have a genetic vulnerability that may have lain dormant for life. However sports (through toxic oxidization or some other toxic cellular process) triggers MND.
    Its a tragic irony that we do sport to be superfit but it is the death of us. It is such a tragic irony.
    There are other triggers. However excessive exhaustive exercise is proven. It is no longer a speculative hypothesis.

    Charles

  5. #5
    Forum Member Ellie's Avatar
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    The ~10% figure is for Familial ALS, where there is a known family (genetic) history of ALS and it is responsible for ALS in inherited cases.

    That's very different from saying ~10% of ALS is caused by genetic factors directly attributable to SOD1, TDP, C9 etc.

    And, of course, there can be a de novo genetic mutation.

    Ellie.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

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    Thanks Charles
    Great to connect with you
    Being new to the forum it would be good to chat off line if you are ok with that?
    Not sure how to do that!!

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    Gibbo:

    Prof. Pam Shaw in Sheffield has a team researching the 'exhaustive exercise-MND ' link.
    They have some statistically conclusive results. I am 4 years post-diagnosis so have accepted exercise has been a trigger for me. What the exact molecular process that is triggered I don't know.

    It has become academic interest to me in that understanding will not 'unfry the egg'.

    I recommend contacting Prof. Shaw' unit and find out what there research has recently unearthed.

    Best

    Charles

  8. #8
    Forum Member Onein400's Avatar
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    It's an interesting subject exercise and MND. However, I struggle to see how you can really analyse it when you look at what is actually required.

    To find gene linkages you need vast numbers of cases, and then accurate data re lifestyle. Lifestyle is subject to vast bias, human recall and is subjective.

    I am trying to find the data, as the work was done over 3 years ago. Does anyone have it?

    The way ahead for finding a therapy is to understand the exact metabolic process happening and then targeting a stopper.

    Coming from the other way, ie epidiemological data is fruitless as the search space is infinite.

    Yes I was fit, but also I drank banana milkshake and lived in a place where weather cold, and oh the sun didn't shine on Wednesdays etc.

    It is impossible to find a solution to MND this way, unless there is an obvious cluster. We have no proven clusters of MND anywhere worldwide.

    This is so different to say lung cancer, which was infinitely rare before the First World War, and then smoking started. It took 50 years to admit the obvious link, but the data was massive. Now 90% of lung cancer is preventable, ie don't smoke.

    For a relatively constant incidence disease like MND, quite intuitively it is going to be largely genetic with very subtle factors. By the way ALS twin studies estimate that at least 65% will be genetic, we just haven't found the gene hotspots as yet. We need sheer numbers of cases analysed to show that. We willl see a rapid discovery rate of genes/markers over the next 5 years. The gene discovery is doubling every 4 years currently.

    The really exciting thing about finding gene hotspots is they don't actually mean that a gene is 100% causal. In reality it means it is associated. Ie having one gene may make it 500% more likely that you get MND, but why? It could be a vastly downstream gene process. The implications of this are vast. A successful gene therapy for gene x could very well provide a therapy for those with MND, even those without that gene mutation!

    Exciting stuff. The key message is that working on genetic MND will bring a cure for all, some day.
    Last edited by Onein400; 17th September 2017 at 13:38.

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    Hi Gibbo.

    I'm female, and was diagnosed with sporadic MND at 29 years old. I'm now 30.

    I believe there may be a link in some cases because like yourself I have been extremely active my whole life. I swam competitively when I was younger, played netball, started running and going to the gym using weights from the age of 17. I used to figure skate and about eight years ago I started training more intensely, doing circuit and spinning classes, running long distances and lifting heavier in the gym. I also became more concerned about what I was putting into my body (I'm not like that now!) I've always struggled to put weight on and I'm quite long and lean (perfect build for a runner).

    I'm now also under Prof Shaw.

  10. #10
    Forum Member Ellie's Avatar
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    Hi Gemma, hope you're doing well.


    Despite several studies on examining a link between physical exercise being a risk factor for developing ALS, a direct link has not been established. A large population of 652 participants were examined in this report:

    https://www.ncbi.nlm.nih.gov/pubmed/24706338

    Another study suggested a link between football (American & soccer) and ALS, but had a very small number of participants, so the peer review was that more research should be done before a reference be made.


    However, there is a known risk factor between having a lower BMI and developing ALS, a category into which many physically active people fit, as well as those who have been “habitually thin” (that’s me) I personally think this is an important link. There is ongoing work being done regarding metabolism and how it may be a factor in developing ALS - as in people who eat like the proverbial horse, yet stay thin or those on restricted diets, by choice.

    Or maybe we got ALS/MND because we wore orange socks. I don’t think I’ll ever know why I got my ALS…

    Ellie x.
    ​Diagnosed 03/2007. Limb onset (arm) sporadic ALS/MND.

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