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Thread: Kevin 55

  1. #1
    Forum Member TIANDB's Avatar
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    Wink Kevin 55

    Hi all..

    I left the Fire service here in the UK aged 50 in 2012 I had enough in my pension pot to get by on and I had a sweating problem, I thought this might be due to job stresses and would clear up when I departed.. It did not but it will..
    Fast forward to today and I can just about wobble around and my voice is not working correctly, I am mostly stuck indoors.
    My father with whom I had a on off relationship as he was sometimes to drunk and sometimes violent. He died at aged 59 after being diagnosed with ALS. two years earlier.. I had my ALS confirmed earlier this month. What a palaver it was to get
    that diagnosis quickly, two months from first contacting my Doctor. I had noticed leg muscle twitches in June of 2017 but put that down to my exercise, I used to walk, Swim and Cycle .. No true signs until November with my right foot slowing then tick tock down with not a day's respite, my right leg heavy and slurring by January 2018. No up day.
    My Doctor who I first contacted in April 2018 got me a neurology appointment through for September and he could not seem with some pushing to get a sooner one. With the help of my xwife and other Angels I managed to get all the appointments and testings and diagnosis done on the NHS within two months. I have applied for Special PIP payment and sent of my DS1500 from my Doctor. Awaiting news ?
    My first idea was to Liquid fast some hoping to improve my Autophagy.
    https://scholar.google.co.uk/scholar...=1&oi=scholart
    This was started 9 days ago for 44 Days with modification so it was 3 day liquid fast ( Nettle T, green T, Bio Yoghurt, good water. And the forth Day Eating well.
    I have modified again and it will be Intermittent Fasting with high protein within a 4 Hour window and my liquids on 3 days and eat well high fat/Protein on the fourth.
    I am also looking into RCH4 and find the thought of 2 radical and destructive proteins as of interest.
    I am pleased to be here but not with my Diagnosis. I wish you all for some miracles.. PEACE : TIANDB

  2. #2
    Forum Member Lynne K's Avatar
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    Hi Kevin. Sorry that you had to join us on the ALS Road and having lost your dad to the same disease at a young age. You are the first that I've heard about with a familial connection of ALS. The neurologists will be very interested in your case. My neurologist told me last time that it's the variations in MND that keep her job interesting. Regards, Lynne

  3. #3
    Forum Member TIANDB's Avatar
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    Hi Lynne . The Neurologist didn't seem to make to much of it. My fathers father went into his eighties so it seems the familial link is only two generations long with me ? I know the first finding of the sod1 gene brought hopes but since then they have found it in as many non familial cases and a host of other genes to consider.
    Regards Kevin.

  4. #4
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    I also have the familial link from my Mother of MND. She had Bulbar MND and died within 6 months of diagnosis. I have mixed symptons of ALS and PMS which I have had for 18 months, orthotics on both legs up to the knees, can't walk without them, and progressive lack of use in left hand. The last consultant I saw tested for genetics but was not going to reveal the result unless we asked.

    He was very interested in the genetic link and advised my sister that if she or my brother carried the MND gene which was passed to their children and they tested positive for it, that if they wanted a child, they could try via a test tube baby and the MND gene could be removed from a foetus. I thought this was amazing.

  5. #5
    Forum Member TIANDB's Avatar
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    Hi loobylou.
    Interesting about the genetics although not to sure I would want them removing things from a baby's genes unless very well tested and successful. I did do a blood test for genetics and will see if I am actually informed about any results ?
    One thing that does have me pondering is the fact that this started with my right foot slowing and if I thought of any weak link with my body it would be that area of weakness after a bad sprain in my army days and always weak since ?

  6. #6
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    Welcome Kevin

    You will find a lot of great support, advice and knowledge from the folks on this forum.

    All the best to you.

    CCxx
    .

  7. #7
    Forum Member TIANDB's Avatar
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    Hi ccinj.
    Yep looking through a few threads all most informative and some sadness obviously. My demise has been most rapid and I have imagined that may be because my Immune system was strong due to healthy eating and practices over the last many years ? I had in my head survival to my birthday in early August but maybe that will be the start of my last year, my 56th also my eighth period of 7 ? TIANDB

  8. #8
    Forum Member Barry52's Avatar
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    Hi Kevin and welcome to the forum family.

    Given your father’s diagnosis I’m surprised that the medical people didn’t fast track you. Stay positive and don’t think of “last year of life”. This disease is unpredictable so it’s better to think of how to adapt to the changes in your health.
    You will get pip as MNDA successfully campaigned for us.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  9. #9
    Forum Member TIANDB's Avatar
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    Hi Barry,
    Yes, I was in a way fast tracked with kind help, Two months is quick ! I believe the average time from first doctor to diagnosis is eight months ? With the NHS . Someone mentioned PIP last week, I tried to use the website text function number with my slurring ha I ended up with a nice kind operator to pass on my Information slowly. I sent off my DS1500 the same day.
    My Disease is Tick Tock predictable so far with seeming no slow onset for me. I remain positive and haven't really had a down day, I realize the chances of a miracle are slight. Lots of lucky peoples on here who have seeming slow progression and active lives and that is good, I hope I can also be a long time poster. Take care Friend.. TIANDB
    Last edited by TIANDB; 30th June 2018 at 11:21. Reason: Coma

  10. #10
    Forum Member Ellie's Avatar
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    Hi Kevin & welcome,

    There's no rhyme nor reason to anyone's progression - even familial ALS can have very different progression paths.

    I started off fast - lost most functions in the first year - and I'm still here, so no one has an expiry date stamped on their forehead

    Enjoy your life as best you can. And keep that positive attitude, it counts for a lot!!

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

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