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    #31
    Some very insightful information there, you really are doing some good research in this area, keep up the good work. I wonder what the link is between football and MND as there does seem to be relatively more current/ex players diagnosed than any other industry or indeed sport.

    All the best

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      #32
      Originally posted by Tecwyn View Post
      I wonder what the link is between football and MND as there does seem to be relatively more current/ex players diagnosed than any other industry or indeed sport.
      There is a general observation that people who've been very active in their lives - not just footballers but mountain climbers, runners, cyclists are represented more than might be expected says he cautiously but there is no obvious causal link.

      I'm a ex racing cyclist, and used to do lots and lots of miles in training and racing in my 20s and 30s and I've commuted in London since 1978.

      Obviously I have wondered, as my MND is not familial, whether some element of the pollution I must've absorbed over the years (NOX, dust from brake linings and car tyres et cetera) has had an impact on me developing motor neurone disease symptoms.

      The steps concept mentioned above makes a lot of sense to me where there might be six steps for those with no genetic involvement (perhaps including dust from car tyres!) and there may be only one or two for those with the more common genes - although "common" seems to be perhaps 10% in total as suggested above.

      There is an epidemiology technique originally used in finding the link between smoking and cancer which has led to this "steps" envisioning.

      We had an interesting presentation from the senior scientist from the Association at the South London a couple of months ago that summarises the current knowledge position and if you send an email to andy at andycawdell.com I will send it to you.

      Keep strong!
      Warmly


      Andy

      ​Diagnosed 03/2015. One sided limb onset (arm) sporadic ALS/MND. MND hitting - now 50% left arm and 90% right arm, plus other bits including left shoulder

      "Things turn out the best for people who make the best of the way things turn out"

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        #33
        My daughter was a competitive swimmer, trained 6 times a week completions most weekends, makes you wonder.

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          #34
          If it wasn’t so destructive this disease we have would be fascinating. As a scientist I still find it fascinating.

          Just starting off from my last statement, ie that MND is NOT rare. It is 1/300 of all of us.

          Now when you start to deal with that number, all sorts of things start to just seem within the bounds of realism.

          Take for example my village. I have MND, and when I told people about it, suddenly I hear, oh “my mum had that”, and “oh do you know about x in the village?”. To be precise there have been 4 in my village that I know of. But mathematically that is spot on.

          And with footballers, we hear of them because frankly it is a vastly popular spot, massive media involvement and even minor league players have public presence now since the explosion of money on to the scene some 25 years ago in the U.K.

          So, if you look at the size of squads in the premier and top league, you would have about 4000 players, high earners, in the last 25 years all with media contact. So doing the math, we expect about 13 players with names to develop the disease from just that cohort! And this seems to fit the current number coming forward.

          It’s just a matter of time before a real public name in sport in the U.K. announces their diagnosis. After all, celebrity is affects far more people today. People are more willing to go public now as well.

          So the numbers coming forward are well within the normal expected range.

          Sadly we begin to think there is a link because of the media, and it taints the science.

          Now on the evidence, there is some evidence, but it is so small that an innate ability for sport might increase the chance of the disease rather than the actual physical effort of the disease. After all we don’t see a massive increase in the extreme sports like marathon running.

          But at most this effect is tiny, and it is almost certainly genetic (as yet unknown). So we might be able to prevent a tiny amount of cases in the future by advising people NOT to exert themselves. It would be like the genetic cases of sudden heart failure, who now identified MUST not exercise.

          The problem is that all traditional epidiemology is flawed in my opinion for MND because you go looking for something that fits your hypothesis and we have no real clusters.

          If we compare with Smoking and Lung Cancer. The link was patently obvious with lung cancers increasing dramatically with the advent of smoking in the First World War. However, it did take 40 years to prove the link, which now we would see instantly if you view the charts. 90% of lung cancer is caused by smoking end of story.

          We just don’t see any such clusters with MND.

          As mentioned, mathematical analysis has now shown that there are about 6 steps before you develop MND. These most certainly include genetics, time and other factors. But these other factors could be anything that occurs between conception and the day of symptoms!

          It’s actually impossible to use population studies/epidiemology unless we have a sheer bit of luck!!

          I don’t advocate or support studies looking at environmental factors as they are shooting at the wind for MND. The number of factors is infinite. It could be that me drinking banana milkshakes in my 20s was a factor! We only remember factors we think might play a part. The money is best spent on the disease process and how we can slow/interrupt the process.

          To back this up, we now know that with two genes, the number of steps required is reduced to 2 or 1!!

          But we don’t know why the genes make the disease more likely, or how the genes develop the disease. It may be that even in people without certain genes, the process affected by those mutations is actually effected in sporadic cases!!!

          We are going to solve MND, and it will come from genetics, NOT epidiemology. Remember, that many gene mutations might even be unique for a person or so rare, we will never find them. However, we will eventually identify the key metabolic processes.

          Keep hope all, science is going to solve this.

          Comment


            #35
            Some absolutely fantastic information, thank you. A lot of what you say makes so much sense, its people with your thought process that will beat the disease.

            Comment


              #36
              Thank you again Onein400. A very interesting read. I do hope that they strike gold as it where and find something more quickly than expected. 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.

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                #37
                Hi, I'm not meaning to be intrusive but is there anyone who can provide some insight into how long it takes for the voice to go when hoarseness sets in and what is the most comfortable way of communicating afterwards?

                Many thanks

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                  #38
                  It could take a few months for speech to stop being understandable Tecwyn, or it could take a few years - or maybe he'll retain speech , it is impossible to say...

                  Your dad's SLT can advise which form of assisted communication would best suit him - ranging from lo-tech alphabet and phrase sheets and a Lightwriter, to hi-tech apps and eye gaze systems.

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

                  Comment


                    #39
                    Thank you for all previous advice, alongside speech problems my dad now has some difficulty in swallowing most foods and is now only eating protein shakes and some ice cream this development came on very quickly, he is rapidly losing weight and a worrying rate. Does anyone have any advice on what foods he could try or where to go from here?

                    Also, he is very weak when walking and holding objects but has not lost the use of any limb as yet, is this typical progression?

                    thanks again

                    Comment


                      #40
                      Hi Tecwyn;

                      The SLT (speech and language specialist) does normally asses the swallow and well as give help on communication ideas and aids.

                      His dietitian can prescribe him other balanced diet drinks as well as advice on easier to swallow meals.

                      The Mnda have a booklet on the subject as well as other info here:- https://www.mndassociation.org/about...-and-drinking/

                      Has anyone said about having a feeding tube fitted?

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

                      It will only remain so if new people post and keep us updated on things that work or don't work and tips.

                      Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

                      Comment


                        #41
                        Thanks Terry, no not mentioned yet as difficulty only come on last few days

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                          #42
                          Hi all, hope everyone here is keeping well and maintaining a positive attitude. My dad is currently declining but thankfully at what appears to be a slow pace, still walking, talking and eating but all at a very weak and reduced rate.

                          I am after some advice if possible please, over these last 5 months I have developed a lot of tightening in shoulders and arms with some accompanying pain and occasional twitching. I also have a buzzing feeling and twitching constantly in left leg and again tightening in thigh muscle with some pain. I also have IMO some wasting in the muscle between thumb and finger and have some perceived awkwardness when performing intricate tasks with hands. I have no weakness but have a general feeling of weakness when walking stairs or lifting but able to lift quite heavy objects but then will get some pain and twitching.

                          I have been to my GP who performed blood tests for everything imaginable and I have seen physio who performed strength tests and physical examination. No cause for concern was the response to both. I don't really recognise my symptoms with how my dad started but worth seeking a neuro appt with this as getting a bit worried?

                          Thank you

                          Comment


                            #43
                            Hi Tecwyn,

                            I'm sorry you're so anxious atm but, no, you're not describing MND symptoms at all. You have no clinical weakness and twitches in themselves mean nothing (and are made worse by anxiety)

                            Did the GP say if you were to have any follow ups?

                            I reread all of your posts and I think it's fair to say there's a hint of anxiety running through your posts which must make you fear the worst - it can't be easy for you living with these worries.

                            It'd be great if you could discuss your fears with someone - can you access counselling at your dad's hospice? Did you get to chat with your dad's Neurologist at one of his Clinic visits?

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

                            Comment


                              #44
                              Thank you Ellie for your reply, I think I could well be suffering from a spot of anxiety. Dr just said to go back if muscle pains continue and Neuro just reassured that it was not familial MND but not sure how reliable that is and probably what is contributing to some anxiety, great idea to talk to the hospice of which I will do. Getting a lot of strange sensations and constant twitching in left leg so may need to get a further doctors appointment too.

                              Comment


                                #45
                                Hi Tecwyn,

                                I'm very sorry to hear about your father, stay strong and keep showing your love! I can honestly say that only now I understand words of 'I know what you're going through' and their real meaning. My love goes to you and your family.

                                My dad, 54, has been diagnosed with MND last summer and it's been such a huge shock for our family that I didn't really take it seriously for a few months. We've been skiing together last spring and it's been impossible for be to understand what's going on and what's going to happen next when I heard the news.

                                Since end of the summer, it has been getting worse very fast, week after week. He would start using one, then two crotches, switching to a walking cart and he hasn't left the house since November last year. Now, he can stand up and down with our help and turn around if needed but he is mostly on the wheelchair, finding it difficult to keep a stability even when sitting. We are now trying to arrange a full-time carer and hoist, however, it is very difficult and expensive.

                                My question is, does anyone have a similar experience with this progress' speed and do you know what to expect? (is it going to get worse so fast or does it stay in certain stage for longer time? or is it very individual?)

                                Also, his symptoms started to show (by knee/tight pain and tripping once in a while) after our ski trip in March when he has been hit by another skier and fell down on the hill. Could this effect the speed of the illness?

                                Thank you all very much for your help, only reading all the words of support on this forum helps us a lot, knowing there are many people affected worldwide.

                                Barbara

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