rocmg
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  • Thanks for the good wishes. Will keep you posted. It's the final days and they are dragging on....
    Hope your mum is doing ok, I do see her updates on PLM. All the best to you!
    Dani
    Wow, thanks so much for the praise on my new home. I do love it so much. I've been here for almost 3 months and I still wake up everyday and look around and say to myself, "I love my home!" Hope all is well in your neck of the woods. Big hugs xo
    Happy New Year, Darling! I am wishing you all the best for the new decade! Big big hugs and a special hug to your mom from me. xoxo
    My Mom is sick also:( Let's talk sometime. I'm in the same boat with people not caring or understanding. I feel SO alone.
    No I am not on patientslikeme..and what is the KNS trial, I have missed that one. My neuro is well up for me to try anything. He is doing research, slightly linked to Dr Turner in Oxford (biomarkers). but my neuro is trying to find a TEST for mnd. It only involves blood tests, me and my husband, control. He also has a drug at mouse stage. How are you finding supplies of Rilutek...I had a supply, but have been waiting more than a month to fill last prescription and have now run out...twitching has increased..darn
    not so good, progressing faster than I would like. Can barely move legs at all now, even in bed. left arm useless, right arm going, cant swallow now. I am thinking I might refuse all food soon, cant take much more. Social services are crap, they havent assessed us yet, applied june 3rd, they are dealing with march referrals. husband is tired out. I am getting the beginning of pressure sores all over, so no where is comfortable..life with mnd is hell, but you know that..sorry
    not sure if I asked you this before.......if you agree can you sign this petition and pass on,,,it was given to me by the local mnd group
    Rosheen,

    I've been wondering how you and your mum are? I've not been on the forum much lately (due to the move, etc) but when I do pop in, I've not seen you... let me know, ok?
    Hi Rosheen, just checking in... hope all is well on your side of the pond. Please give my regards to your Mum.. you are both in my thoughts.
    Hi Rosheen,
    I have had a few bumps in the road, all is ok. How are you with the RA? How is mum doing? Give her my best, tell her i'm thinking of her.

    Take Care
    Betty
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