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    Service Irregularities

    I've been reading a lot about poor care for MND sufferers. I am very fortunate, there is a great MND centre near here in Cambridge. I discovered yesterday, met a new person with MND at our monthly meet, that Stoke has an excellent centre too! Seems pretty random though.

    With the new money given to our Association, i expect it will go to research, but maybe the renewed attention will allow more groups to be set up.

    Locally, all the volunteers are people who have relatives who suffer, or have sufferered. I don't even know if thre are MND groups throughout the UK.
    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

    #2
    Ooooops! Saved my new topic in the wrong forum! MND Connect, can you move it fo me?
    Mum died with MND in 1979 – My sister and I have a wonky gene, probably inherited from mum. Reckon my MND started sometime in 2018.

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      #3
      OT and physio both said that mnd isn't covered in their training. Which is a shame as it's very hard to diagnose and more people aware the more chance someone might recognise the symptoms. There is also a high number of sufferers here in Plymouth, no idea why that is. It would be very useful to everyone if mnd was part of medical training and I was told that, on the off chance that they managed to find a care home for Stephen, they would provide training. Which is a win win for everyone.
      when i can think of something profound i will update this.

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        #4
        ….. seems to be very much a postcode lottery as to the help you can get. I’m quite lucky in that I have an excellent MND team in Derby who also have the community OT’s, physios, etc, well organised.

        But I do think that having access to information and support with the overall process is absolutely crucial especially at the diagnosis stage when everything falls out of the sky on top of you.

        Foxes Never Quit 💙

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          #5
          MND services seem quite good in Shropshire. Unlike Plymouth there doesn’t appear to be too many sufferers in Shrewsbury. Went to a meeting at my local hospice for MND sufferers & disappointedly only one other turned up and he was from Wales.

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            #6
            denise I didn't know there was a high rate in Plymouth. I am about half hour away. The mnd network lady said there seems to nationally be a higher rate in farmers and people who spend a lot of time outdoors which made science people consider something in ground or rural surroundings being a part of the cause but just one factor. I spend majority of my days outside also. Sorry went off tangent a little xx

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              #7
              Zante one of the factors frequently suggested as a contributor to mnd is environmental. In the US there seems to be a higher incidence amongst Veterans?

              I understand there do seem to be 'clusters' in some geographical areas, but there seems to be little research as to whether this is coincidental or not. I always think all of us on here have histories/experiences which may well have common ground but correlating that in a meaningful way is the challenge.

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                #8
                I read somewhere that the Italians believed it was something to do with sports. Field sports mainly. My husband played football for London colney for many years and cricket. One day we might find out.
                when i can think of something profound i will update this.

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                  #9
                  Olivia H.and denise i don't know if being on the mnd register they then ask any questions or look at commonalities within those diagnosed to try to ascertain what common factors there might be? I know we will probably never know and I don't want to look back thinking I wonder if that or that could have contributed to it... numerous concussion, excessive exercise, smoker, trauma, crap diet..... I would be searching for the answers for rest of my time!! I did notice sports American footballers seem to have high rates. Its just all so sad and difficult accepting nobody knows !!! Xx

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                    #10
                    Stephen has never been asked. Think the questionnaire would be soooo long. Just comparing a handful of people and how far back would we go? There must be something but then why haven't those close to suffers have it as well? 🤔
                    when i can think of something profound i will update this.

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                      #11
                      Denise, Denise, Denise! What will we do with you??

                      Other naughty boys come to mind at this time of year who don't like authority.

                      https://www.youtube.com/watch?v=ransFQVzf6c

                      Love and cuddles xxxx
                      Copyright Graham

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                        #12
                        Dear princess Graham

                        I thought it was field sports but then yeah they play on grass too.

                        Kisses and snuggles
                        Denise xxx
                        when i can think of something profound i will update this.

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                          #13
                          I'm not sure how many people have MND in Northamptonshire. There is a local MNDA branch with a monthly lunch meet up. Sadly I always seem to be too unwell to attend, but the one time I did go there were about half a dozen attendees.

                          I think knowledge and services here are dreadful. The hospice is overstretched and with no specialist nurses we seem to be muddling through (badly). I'm trying to find ways through the treacle, but if I can't by the time my youngest finishes school then I will be forced to move somewhere I am looked after and feel safe and understood.

                          In relation to causes, I've had loads of surgery on my left leg and a hip replacement at age 31. Mine started in that limb.... not sure that is coincidence.
                          Diagnosis confirmed Jan 2022 (age 46) after several years ignored/ misdiagnosed.

                          Symptoms began in left foot 2017. Now mainly left side, speech and some loss on right side too.

                          Unable to walk unaided (powerchair user), poor speech, left hand behaves like a drunk toddler but generally positive and determined.

                          Comment


                            #14
                            I don't think we are going to see eye to eye princess...

                            https://www.youtube.com/watch?v=XP9cfQx2OZY

                            Love and cuddles xxxx
                            Copyright Graham

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