Multiple Sclerosis awareness week

  • This topic has 10 replies, 9 voices, and was last updated 1 month ago by  chvck.
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  • Multiple Sclerosis awareness week
  • Premier Icon chvck
    Subscriber

    It would appear that this week is MS awareness week. In the interest of awareness if anyone has any questions about MS, be it personal to me (I have highly active relapsing remitting) or the condition in general, then ask away and I’ll do my best to answer to the best of my knowledge.

    I also blog a bit about how it affects me (including a post this morning, written after getting out on my bike :)) at https://chvck.co.uk/tag/multiple-sclerosis/.

    Premier Icon gnusmas
    Subscriber

    My Mum has relapsed completely over the past 18 years or so since she was first diagnosed. She can only move her head now, a prisoner inside her own body so to speak. Permanently in a wheelchair and needs hoists to move. She needs 2 carers at all times, my Dad being one of them and he has his own issues too. Seeing her decline over the years has been heartbreaking. I have helped where I can over the years, it’s a horrid thing.

    I guess this is where I automatically jumped into my carers role for Lyanda over the past few years, i sort of knew what I needed to do.

    I will forward your blog to them so they can have a read of it, once I have read it. Good luck with it, if you ever want or need a chat, please let me know.

    My better half was diagnosed 11 years ago. It’s a tough journey for someone to slowly deteriorate. At least they are better at diagnosing it.

    muzz
    Member

    Gnusmas, my GF experienced similar to you.

    All I can say is how amazing she and her brother are for the care they put in place.

    All the very best to you.

    Premier Icon Dickyboy
    Subscriber

    Seeing her decline over the years has been heartbreaking.

    Very much this, I have to fight back the tears every time I see my sister in law these days, so glad she and my brother have had lots of adventures in the past, but doubly gutting to see what they are going through now 😞 we do what we can but also feel totally helpless. Hearts go out to anyone suffering.

    Premier Icon chvck
    Subscriber

    Good luck with it, if you ever want or need a chat, please let me know.

    Thanks gnusmas, I have a good support network though :). You’re clearly an awesome person with the care that you’ve given to others and are still willing to extend.

    Sadly it sounds like it’ll be too late for many of the loved ones in this thread but there is some exciting sounding research that will be coming through in the next 5-10 years so there’s hope yet.

    Premier Icon jamj1974
    Subscriber

    Brilliant blog. Sharing your experiences for the good of others is fantastic.

    Premier Icon somafunk
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    Another STW’r with MS, i was first diagnosed back in april 2017 after complaining to my neurological spinal team (who i saw every year since 1992) of ever increasing leg weakness since 2007, the leg weakness was put down to the fact that i had broke my spine in a number of places back in 1991 at age 19 and it was the spinal cord damage coming back to haunt me so to speak and what did i expect with the damage that was done to my spinal cord. Eventually i threw a strop and demanded a second opinion back in early 2017 and as soon as the 2nd neurological consultant saw me walking/staggering towards him and after a 10 min consultation he was convinced i had MS, at the time he hoped i was relapsing remitting MS (the early stage/good type) its now two years later and after numerous MRI scans i’ve recently been diagnosed with secondary progressive MS that i’ve more than likely had for a number of years as the disease has progressed very quickly over the past 15 odd years due to never having DMT treatment for the early stages of the disease, it shows up as black/dark patches in my brain and my spinal cord where the disease has destroyed the myelin sheaths (much like electrical insulation on wires) and destroyed the nerves so signals don’t work.

    Can’t walk, can barely stand up without holding on to something for stability, constant muscle tightness/spasms/pain from legs/arms/shoulders,  can’t ride a normal bike anymore which **** sucks balls as that was my entire life and i was pretty **** good at it (even if i do say so), currently riding a bafang mid drive equipped bike with a throttle that’s amusing when i fall off as i struggle to get back on whilst wrestling with my legs on the ground as i try to get back on the bike. Still got my scott e-genuis but thats useless now as i can’t get my legs to bend and turn the cranks, also i can’t find a way (and bosch are no **** help) to convert the Bosch CX motor to a thumb throttle so if anyone wants a very little used Scott 710 E-Genuis medium for a good price then get in touch

    I’m letting the MS get so far then i’m calling time up, I’m not the sort who would deal well with needing help for basic needs and i refuse to end up in chair as i spent 6 months in a wheelchair back in 1991 when i lost use of my legs and swore id never sit in one ever again, my mum/bro (dad died of medical cock-up last year) realise this and accept the fact.

    So yeah…….MS is a c@nt to live with.

    Premier Icon oldtennisshoes
    Subscriber

    It’s a bastard of a disease. There’s at least one other regular poster who’s wife is also suffering with it. I had a scare 4 years ago and since then I’ve followed the OMS lifestyle as best I can.
    https://overcomingms.org/recovery-program
    I know bits of it are contentious and it’s not for everyone, but I’ve found it useful.

    Premier Icon MrOvershoot
    Subscriber

    Going to be a tough one this 🙁
    My wife of 20 years (been together 37) has advanced secondary progressive MS.
    She was first diagnosed when she was 21 while at university but had the symptoms 3 years before.
    This has now reached the stage where she needs 24/7 care, is totally dependent on others(me & carers) for everything feeding/washing/dressing/toileting etc.
    Despite this she remains outwardly so positive, I have my doubts but she hides it well with only the occasional slip of the mask.
    The hardest part for me is her cognitive decline from one of the smartest people I have ever known into what can only be described as dementia where her speech is little more than 3 stock single word answers that often have no context.
    She constantly keeps choking as she forgets to swallow and cant even remember how to cough 🙁
    Somafunk I fully understand your thoughts, I’ve often thought it would be a better place if we both just “went”

    Premier Icon chvck
    Subscriber

    The system has really failed you there somafunk, I’m sorry it took so long for you to get a diagnosis.

    I’m letting the MS get so far then i’m calling time up

    I get that too.

    I’ve followed the OMS lifestyle as best I can.

    I loosely follow that too. I’m quite strict at home but less so not at home although will try to find something that fits. I followed it strictly for 6 months and it was just too difficult for me.

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