Viewing 9 posts - 1 through 9 (of 9 total)
  • #73494
    Neurology annual review

    I have my neurology annual review tomorrow and i am, for the first time worried about how i will manage to get there.

    Usually i would get the bus and not think much of it but this year i am reliant on my two crutches for the first time. I am sure i went without any last year. :(

    I suppose this is a wakeup call to the fact i have a muscle wasting disease. I went out for a walk earlier to try and loosen myself up but my arms and shoulders are aching and stiff still from those pesky crutches.

    This is probably the last year i will be turning up at the clinic on my own two feet and i am feeling a little sad about that.

    No more feeling sorry for myself though, most of you guys have much more to deal with on a daily basis but, all the same, i am entering the next phase and there is no going back.

    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #79099
    Re: Neurology annual review

    The thing is that what you are going through is unique to you, it doesn’t matter what anyone else has gone through before.

    Your experience is valid and if it makes you feel sad then that is equally valid, no need to apologise for it because you think someone else has got it worse. People used to tell me that as bad as my situation was there was always someone else worse off, but really they were just trying to make themselves feel better about my pain.

    I believe that accepting your situation is important. There are milestones along the road for all of us but they only apply to the living. I take a lot of comfort from the fact that I am still alive to mark those milestones because we are all, able and disabled, heading in the same direction ultimately, and life is a ride that we should all make the most of.

    TygerTyger
    Participant
    Posts: 283
    Joined: 08/09/2010
    #79100
    Re: Neurology annual review

    Thanks for the reply Tyger, i am trying to get myself back on track but all i see is lonliness and worsening health ahead of me, i call it depression… ;)

    Anyway, i am about to go out into the torrential rain for my long wobble down to the bus station, they could have picked a better day for it i have to say!

    I suppose i could get a taxi to the bus station but that would be ridiculous, i hate wasting money on taxis for what would be a short walk for most people.

    All the best
    Ranald

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #79101
    Re: Neurology annual review

    ranald

    Pre Car I used to get patient transport to all my Hospital Appointments, Used to have to book via GP but think you book it now via the clinic when you make future appointments.

    aww well, soon youll have your sporty golf and wont have to worry about braving the bus. just the parking ;)

    I had my 6 monthly review last week. I always find my neuro doc and MD care nurse really helpfull. Its my neuro that organises and coordinates any treatment I need.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
    #79102
    Re: Neurology annual review

    I agree with Tyger completely but don’t think I could have put it so well.

    Hope it goes ok today Ranald :) and you don’t get too drenched.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #79103
    Re: Neurology annual review

    Please don’t stress yourself when comparing your present state to those of other sufferers. Every one is uniquely individual, not only in what stage they are at with their particular MD but also in how they deal and cope with it.

    You are experiencing some ‘first-times’ that are understandably concerning, even depressing. You have the right to feel how you feel. Soon you’ll have the wheels to give you more mobility.

    I'm always the animal, my body's the cage

    I blog about nothingness www.amgroves.com

    AM
    Participant
    Posts: 4,751
    Joined: 05/03/2015
    #79104
    Re: Neurology annual review

    Thankyou kindly Cat, Sarah and AMG. Your support and understanding is of great comfort to me at this time. :)

    ranald
    Participant
    Posts: 747
    Joined: 05/09/2010
    #150656
    Reply To: Neurology annual review

    So I had my neurology annual review yesterday and came away feeling rather rude but I have basically told the unfortunate doc that I find this annual event to be unhelpful as all they do is rub my nose in my disability which isn’t very emotionally fun and achieves nothing as there is nothing they can do. I just wondered if others feel the same and also whether there is anyone who has stopped bothering with annual reviews? I am not trying to say that regular review with a neurologist is no use but I do wonder if there are better ways it could be done, whether it could be less often (appointment systems don’t seem able to cope with appointments less frequent than annual but surely if there was enough demand this might be possible) or be in some way more responsive to what people need when they need it. Personally I am on ventilation so see a respiratory team and I am also in the highly priviliged position of having access to regular physio via the neuromuscular centre in Winsford so the neurologist adds little. I must make clear that I am enormously grateful for all the excellent care I have received via the NHS and also the NMC but I would be interested in others’ thoughts.

    Elizabeth

    Ailsa
    Participant
    Posts: 17
    Joined: 09/12/2011
    #150672
    Reply To: Neurology annual review

    Hi Elizabeth,

    My previous neuro was very good at coordinating my other care as is my current ventilation team.

    Highlighting DLA and PIP I would encourage you to maintain the yearly trip as you may need to ask the neuro for input on any application.

    Your neuro may also be better place to refer to other places your GP can not.

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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