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    #16
    shelly21 so sorry, coping with MND is more than difficult enough without difficulty in getting a basic resource like ramp. We all get such different amounts of help , it’s not fairly distributed. Hugs xx
    Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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      #17
      It amazes me that help varies so much from area to area. My chair was only partially funded by MNDA, the rest from us and Dodie foundation. Where does all the money go. There’s only riluzole available after 30years or so. Puzzled.
      Bulbar ALS diagnosed September 2021, no speech, PEG fed, using ipad with Predictable to communicate, taking each day as it comes

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        #18
        Hakuna I think more needs to be said that the grant figures they say you can apply for do not actually be given. It raised false hopes with me.

        Diagnosed May 2021 bulbar onset als.

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          #19
          I have given up tbh . assessed for special armchair waited for OT then told there was nothing and on a list. Association informed and agreed to temporary sort something out and ..... nothing... (I come on the forum to get advice and help whilst battling this terrible disease ) as far as the grants etc we'll ...

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            #20
            Originally posted by Ellie View Post

            On the phone call today, did the person from the MNDA give the reason why you were only getting ~50% of the requested amount? Perhaps there wasn't enough supporting paperwork submitted by the OT, or something. And can you appeal?
            Sorry to hear this awful news Shelly.

            What I can say is that I had an MNDA grant application at the beginning of the year and I was only offered around one third of the total cost. I did talk to somebody directly about it and it is because apparently in the last two years the donations received by the MNDA have been much less than usual and they have had to cut back on the amounts granted to us ☹️

            If the initial grant application was not done correctly than that should be corrected regardless.

            I would give them a call directly, they were very helpful.

            James
            Foxes Never Quit 💙

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              #21
              shelly21 I would say you have every right to expect the full support of the mnda...there are around 5,000 people living with mnd at any one time in the UK...not that many really...and many of them will not have applied for grants, meaning the pool left to fund those who do need support should be sufficient. And if it is a case of prioritising the monies available, then support and advocacy for those who actually suffer mnd should be top of that list. This is fundamental.
              Perhaps write to your MP to highlight the gaps, and also contact the Ian Pratt Foundation for advice/support.

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                #22
                Friends of my husband arranged a fundraising rugby reunion last weekend and we raised £7000. This went to the MNDA as they have helped us with certain thing s in the past. However I was contacted by our MND nurse vie telephone for a review and I mentioned to her about the money raised and she asked if she could contact the MND association. I later got a telephone call from a local branch South Lancashire MND who I wasn’t aware of and they were keen for the money to go to them. I explained that it had already been sent to MND.
                The reason I am telling you all this if you don’t get much joy from MND ask if your nearest local branch could help.

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                  #23
                  @Shelley21, am I missing something here. Did your OT apply to your local council for assistance? Some things can be put through as small works. I recently had the threshold between my bedroom and my wet room changed through small works. I have had to pay for my wet room conversion and ramp. It always amazes me that the cost of everything goes up for people with disability. I did receive contributions from MNDA, Doddie's foundation and a former employers benevolent fund. As I am still working I could not get a Disability grant from the local council due to means testing, have you tried for that?

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                    #24
                    shelly21 - I am so upset and shocked to hear you are hitting your head against a brick wall and dealing with endless "chocolate teapots" like I am.

                    I have just gone off like a bomb. I think it has all got too much for me. I'm heamoraging money I don't have and I am so frustrated too. Everyone makes promises that are never followed through.

                    I wonder if we are in the same area?

                    You are welcome to private message me if I can help at all.... I am meeting my MP next week because frankly the care I've (NOT) received has been far, far worse than this diagnosis.
                    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.

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