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    #46
    Ellie - the fabulous OT from the hospice would normally be a massive help. But she has been off sick since the day after we first me and locums are just not able to meet me needs. I'm inclined to give up on it all. I'm probably just tired. Was in a lot of pain all night xx
    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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      #47
      Maria C - I like the plan. Once run over several times I will post the pieces to you for placement under your pool 🤣
      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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        #48
        Tabbycat and LindaB I also had high hopes. I think that is what keeps making it worse. I think finally I can relax and get what I need... but then they are not able to follow a plan to completion.

        I'm just too overwhelmed and exhausted now to keep battling and looking for more help/ solutions/ people with lots to say but nothing happens.... I'd quite like yo be out enjoying myself every day and making memories xx
        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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          #49
          TinyLady you must do what is best for you and what you want. The one thing that would have helped me when first diagnosed was some home adaptation, but surprise surprise, I was not eligible. Rightly or wrongly, this made me want to be as independent as possible for as long as possible and do things my way. The best person to know what works for you is you. Sending hugs x

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            #50
            I used to be a day patient at my local hospice and they were wonderful carers. I felt safe and hubby knew I was being looked after x hopefully you will get to enjoy some complimentary treatments x enjoy the change xx

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