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Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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There’s a documentary following rob burrows (rugby player) on BBC some time this autumn. Date unknown at mo -
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See related posts on this subject by JamesW and me on the Early Bird Club thread.
Must admit most of the folks here don't strike me as enthusiastic Rugby players
Hi, I'm Eddie.
Started with wobbly left ankle in Nov 2020. Diagnosed 22 Oct 2021, confirmed by 2nd opinion 4 days later.
Full time powerchair user. Overnight NIV. PEG'ed but still eating. Voice banked but still talking.
Still wondering what the future will bring.Comment
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Lol 😂
Although in fairness I played a lot of rugby in my younger days…. I was a forward as well 😊Foxes Never Quit 💙Comment
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The rob burrows documentary is on bbc2 tonight at 9pmDiagnosed May 2021 bulbar onset als.Comment
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I believe head trauma is up there with top 5 causes.Diagnosed May 2021 bulbar onset als.Comment
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🤔 Tonight’s documentary is listed as Steve Thompson, Head On: Rugby, Dementia and Me.Originally posted by shelly21 View Post
Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.
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Rob Burrows documentary it says is on the October 18th. XxDiagnosed June 2022. Confirmed MND which is currently PLS. Limb onset.Comment
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There's a caution on the MNDA Research Twitter that the sample size is small, as well as a familial overlap within rugby community (compared to some other sports).
I don't watch much TV, but when I'm down south every 5 or 6 weeks in a hotel, there has been a BBC breakfast news programme featuring MND most times over the last 14 months, as well as the regional area segment (BBC South West) particularly featuring MND rugby players too.
If nothing else, thank you to the sportsmen and their colleagues supporting them regarding highlighting this issue around greater public awareness and with fundraising.
I've never been great at sport, but I used to do 200+ miles a week cycling for several years from late teens to 30 something, as well as being very physically active with work and hobbies - so I follow the wider debate around perceived 'athletic' activity history risk, as well as being mindful that I havent been engaged in contact sport with head injuries risk (although other occupational and leisure / accidental neck risks).2020: odd symptoms. Nov 2021: Hand atrophy.. Mar 2022: Second arm atrophy - Confirmed Apr 2022: MND.
Also Crohn's Disease from 2005ish. (Hi, I'm Dan in Cheshire)...Comment
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As an ex-amateur rugby player of 20 years now with MND I reckon so.
Though I thankfully seem to be the only one from my clubComment
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My husband ( who has MND ) played rugby for years well into his twenties. He played prop.!! XxComment
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