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Thread: Hello everyone!

  1. #1
    Forum Member Peanut's Avatar
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    Hello everyone!

    Hello there, just wanted to introduce myself to the forum; I was diagnosed a few months ago.

    It started with muscle twitches about two-and-a-bit years ago, which I completely ignored: after all, they were painless and didnít bother me, and I assumed it was just something that happened to middle-aged bodies ... But then I began to lose strength in my right leg rather inexplicably, and finally went to my GP who referred me to a musculoskeletal service which was phenomenally useless. Without any diagnostic tests they sent me on a wild-goose-chase from one physiotherapist to the next, fobbed me off with the advice to ďdo more exerciseĒ, and just ignored my concerns that the exercise didnít make any difference at all ... By the time I got to physiotherapist number three I was literally begging to be referred to a specialist, but no luck. In the end I went private to get tests done (goodbye savings!) ... Anyway, now Iím in the capable hands of the NHNN, which has been great so far.

    Itís mainly affecting my legs and hips at the moment; I walk at a snailís pace and when it comes to climbing stairs Iím about as nimble as a Dalek. The weeks after the diagnosis were pretty tough, but I no longer wake up in a panic every night, and Iím getting a lot more relaxed about crying in front of strangers ...

    My husband and I are trying to keep calm and carry on, as it were; weíve sorted out the initial practical stuff like handrails and PIP/Access to Work applications. The prospect of losing ever more mobility does freak me out, especially as our plans to travel and see family this spring and summer have been totally ďcoronaídĒ, but I try to count my blessings. It seems to be progressing fairly slowly so far, and Iíve got a supportive family, and a job which requires very little physical mobility. Itís been really helpful reading everybodyís contributions to the forum, and to see you all get on with the ups and downs of this bloody thing, sharing support and advice. So thank you everybody!

    Cheerio,
    Peanut

    PS: Apologies for the use of a pseudonym; I donít want my students to stumble across the forum. Hope thatís ok.

  2. #2
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    Welcome Peanut. Good to see that are starting to come to terms with your diagnosis and getting practical stuff sorted. Have you seen an OT yet to advise on providing you with aids such as grab rails etc around the house? Please feel free to ask questions, there’s a wealth of knowledge on the forum.

  3. #3
    Forum Member Ellie's Avatar
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    Hi Peanut and a warm welcome to the Forum.

    Sorry you've had to join us and I can only hope that your progression stays slow.

    Are you back in the NHS system now?

    As Miranda suggests, if you need aids to safely get you around the house, contact your OT - we have a 'No Falling Allowed' rule here

    Stay safe.

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

  4. #4
    Forum Member Peanut's Avatar
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    Hi Miranda and Ellie, thanks for the warm welcome!

    Yes, the local OT team have been great; they assessed the house and got extra grab rails and handrails for the stairs sorted out really quickly. I've also had very good experiences so far with the local Rennie Grove palliative care team who have offered all kinds of support.

    We're planning on some more alterations to the house (as and when we can get builders in, post-corona...) - I'll post questions in the relevant section soon.

    And yes, I'm now with the National Hospital at Queens Square - once I got referred to them it all went very smoothly, and they seem to be a caring and competent team.

    Not upwards, perhaps, but certainly onwards!

    Peanut

  5. #5
    Forum Member Shaun's Avatar
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    Welcome Peanut,
    It took me two years of dropping stuff and not being able to grip before eventually seeing the GP about 'my hands don't work properly` I was fortunate to see head of physio who referred me for the nerve test, followed swiftly to see consultant.. You seem to have a positive attitude keep it going It
    .I understand your concerns about students, my daughter is a teacher and a couple days after diagnosis she came home in tears as the boys were doing Stephen Hawkins impression , they didn't know about me, it was just boys being boys
    Keep positive and take whatever help is available,
    Shaun

  6. #6
    Forum Member Peanut's Avatar
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    Hi Shaun, a two-year wait sounds really frustrating; I was already at the end of my tether after one year!

    My students are at uni, so they are (fairly ...) mature, and I'm not worried about ridicule or anything like that - but I do know that they google their lecturers just out of curiosity, and I've not yet decided whether or how to be "out" about my MND with them.

    Funnily enough I once nearly squashed Stephen Hawking (by accident!): tried to push open a heavy door, took a running start, someone else opened the door from inside, I stumbled down the length of the corridor at full momentum and nearly landed in the lap of a chap in a wheelchair who looked awfully familiar ...

  7. #7
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    Hi Peanut and a very warm welcome to our friendly forum.

    I am very sorry for your diagnosis. Like you it took me over a year to be diagnosed and I was referred to a multiskelital clinic and given repeated physio for my leg weakness. One new physio was amazed I had not had an MRI or been referred to a neurologist and I think he suspected straight away .

    It's hard to know when to tell everyone and "come out " .I felt better and relieved when everyone knew but it's a hard decision and initially I tried to hide my symptoms.

    It must be especially hard at the moment as we are all isolated and unable to access help so im hoping you have support. It's a shame about your travel plans, peanut. I use a powerchair and am unable to weight bear but we are able to take short haul flights, taking my chair and using the airport special assistance.

    I love your story about Stephen Hawking. I also like your username and avatar. So much so that I have been wanting to eat peanuts all evening ! If we weren't isolating I would have asked my husband to go to the local shop for some.

    Take care
    Love Debbie x

  8. #8
    Forum Member nunhead_man's Avatar
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    Good afternoon and

    A welcome from me to this place that none of us really want to be.

    I too found the period between first signs and final diagnosis the most difficult of the five or so years I've had this thing so I'm pleased to hear you got through that period and are beginning to plan positively.

    I'm sorry corona virus has hobbled your travelling plans - for us there were none of those we are still trying to move house and it is coronavirus that has has hobbled us in regard to that
    Warmly


    Andy

    ​Diagnosed 03/2015. 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"

  9. #9
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    Hello Peanut, I have often looked at this forum but this is actually the first post I've made, but it was nice to see someone else is under Queens Square hospital and I thought they were very caring and helpful too.

    My husband was diagnosed with MND about a year ago, he had jumpy skin on his arms which as soon as we saw a private neurologist in Windsor he pretty much knew exactly what was wrong straight away. They were the classic fasciculations. What had fooled any previous diagnosis was that Mark seemed to be starting to suffer with some dementia symptoms and a change of his character. Subtle changes but obviously I was noticing it. So as soon as we saw Dr Katie Sidle we were told Mark had FTD MND. - (Frontal Lobe dementia)

    And so our journey continues. Apparently this combination is very rare and I haven't met or spoken to anyone else who has this diagnosis so its a lonely journey sadly.

    I am wondering about contacting the Rennie Nurses but have held back at the moment. I know how good they are though as they helped with my dad, and Mark's mum and dad.

    Take care xx

  10. #10
    Forum Member Peanut's Avatar
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    Hello Sue,

    I'm sorry to hear of your husband's diagnosis. I was a bit hesitant about contacting Rennie Grove as well - "palliative care" has a somewhat final ring to it ... but they've been very good with all sorts of practical things like exercise, and they offer support to carers as well such as counselling, which my husband has found helpful.

    All the best, Peanut

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