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Thread: Advise please,next steps

  1. #1
    Forum Member Shaun's Avatar
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    Advise please,next steps

    Hello MND connect
    Background summary: diagnosed Nov 2019, ALS flail limb (2 years undiagnosed). Slow progression
    No immediate concerns, carrying on pretty normally, still working.
    Have seen consultant twice, Nov for the news we all don't want hear and a 2nd last week for blood results (riluzole) and respiratory (all good) , so as I say no immediate concerns and it's slow progression.
    So I have had a couple of months to get used to it, (almost accepting it) and have read through the mnda book and web pages.
    The thing that I am lost on is the support mechanism; there is a lot of talk about specialist nurses, specialist centres, OTs etc. And how they can help on this journey
    What happens when your health authority does not have a specialist nurse or the OT isn't required, (is that hospital or council ?). And your GP s advice is to get an emergency appointment if I get a temperature or if I need time of work he will give me a sick note.
    As I say I'm low maintenance and the moment 1 hand only half of it working, shoulder means cant lift fully and one leg works only when it wants to. Who do I ask for help when it gets harder what should I expect my GP to sort out. Because at the moment he is as much use to me as a vegan at BBQ , at my last appointment he reminded we that we had run over time by 3 mins, and had to cut me short.
    Thanks for any advice
    Regarding local support trying to get there but I am still working and haven't been able to get the one meeting held, there is one this month which I will try to go, so thought I would ask on here in case I dont

  2. #2
    Forum Member Lynne K's Avatar
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    My neurologist got in touch with local palliative care services that included an OT, Physiotherapist and a Speech Therapist. The neurologist that diagnosed me referred me to the MND clinic which is run by my neurologist. Ring your neurology department and ask. Good luck. Lynne
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my ballance.
    I'm staying positive and taking each day as it comes.

  3. #3
    Forum Member Shaun's Avatar
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    Hello Lynne
    My neurologist is part of the medicine for elderly department ,so an add-on for MS and MND customers (don't like the patient word) and I'm only 58
    When I asked him about OT he suggested the MNDA association visitor might be able help more.
    I'm sure she could but it doesn't say much for the professionals.
    When I asked about specialist nurse was told no funding available , I should raise concerns with my physio who would raise it during team meetings .
    I am seeing physio at least that's something .
    NHS postcode lottery I suppose
    S.

  4. #4
    Forum Moderator MNDConnect's Avatar
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    Hi Shaun

    The support available does tend to differ depending on where someone lives. Not all areas have specialist nurses.

    We have MND Care Centres which are centres of excellence specialising in MND. The specialist nurses are often based at the Care Centres. The contact details for all of our Care Centres can be found on our website here https://www.mndassociation.org/suppo.../care-centres/

    If you ever have where you need help but you aren't sure who to turn to, please do know that you can always contact us. We will be able to help or be able to point you in the right direction of who can help. We can be contacted either through the forum, via email at mndconnect@mndassociation.org or on freephone 0808 802 6262.

    Best Wishes

    Rachel

  5. #5
    Forum Member Ellie's Avatar
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    Hi Shaun,

    Even if your nearest specialist MND Clinic is a bit of a trek, it's worth going to for regular appointments, at least until you get to know what's what regarding local services.

    Lynne's suggestion of being referred to Palliative Care is a good one - often this is linked to the local hospice but please don't be put off by that, they tend to have good resources (OT, Physio, Nursing etc.) and are more knowledgeable about MND than your average GP.

    Great that you have slow progression.

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

  6. #6
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    Hello Shaun,
    Ellie is right, a local hospice will be a huge resource for information and support, my local hospice is Macmillian, I thought they where cancer only but I was totally wrong, they understand my condition and if they canít help, they know who to refer me to, to get the problem solved, google your area, see whatís local for you, good luck

  7. #7
    Forum Member Shaun's Avatar
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    Hello all, thanks for all the advice,
    There are 2 care centres both within an hours drive, I thought these were for people who lived there, didn't realise they were open to all.
    I have looked at the services available at our local hospice and was certainly surprised at the range of help they offer,
    I feel a little more relaxed about it now you have shown me there are other areas of help when I'm ready and I don't have to rely on the GP. And I will make an serious effort to go local support, I suppose it's because I'm not that far along and feel a bit of a fraud with just my dodgy hands.

    Ellie, the only problem with slow progression is that my wife insists I keep doing the washing up, but I am excused dusting, she doesn't trust me not to drop her ornaments

  8. #8
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Shaun View Post
    Ellie, the only problem with slow progression is that my wife insists I keep doing the washing up, but I am excused dusting, she doesn't trust me not to drop her ornaments
    Clever lady, your wife. You'll just have to start accidentally dropping a dish or two and you may get a free pass

    Actually Shaun, consider your dishwashing chore as hydotherapy for your hands - exercising in nice warm water !!

    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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