Connecting with those who have supported me: Clara

Dear All

havent been on the forum for a while as my mum now has a diagnosis of Multiple System Atrophy....they described it as on of the ugly sisters to PSP, so many parkinsons plus sysndromes but all equally as horrible. This was under Prof Lees is Queen Sq, London. But I still feel as though this PSP forum and all of you are my family, I havent really connected with the MSA forum as I feel more at home here, and all the things my mum is experiencing is all so alike to PSP sufferers. MSA affects the bladder and also heart and balance. My mum had a catheter fitted this week, she has had months of bladder infection and so finally it can all get out her system, I hope. She hates it, and thats so sad to see. She cannot turn in bed now, walk unaided and falls all the time.

However ... and this is where I wanted to share our ''good'' news...she was fast tracked last week for continuing NHS health care. I am still in shock, as readin on here how difficult it is to get this, I cant believe that the district nurses managed to get it! So I wanted to say to you all, dont ever give up hope, if you are fighting for it, just keep on keeping on and asking for help. The more people you can involve the better. eventually someone will listen.

please update me how you all are - does anyone know how Heather Edmondson is??

Much love to you all

Clara (daughter of Rosemary) xx

9 Replies

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  • HI

    I am so sorry yr mum ahs msa and has been fast tracked for continuign care

    but plz stay in touch with us all

    lol for now jIll

  • Hi Clara,

    Welcome Back!!!

    You're more than welcome to blog here - as you say we're all family under the Parkinson's plus umbrella. :-)

    Although it's sad that your Mum needs Continuing Care funding it must be such a weight off your mind to know that you have it..... "Hurrah!" for good District Nurses :-)

    We've just had to get re-referrred to the District Nurses as Mum has developed a pressure sore :-( We hope we've caught it early and it will heal quickly.

    Take Care

    Love to you and Rosemary

  • I have not heard of "continuing care" what is it?

  • Have a look at this link nhs.uk/CarersDirect/guide/p... it explains what Continuing Health Care is.

    Lesley x

  • Hi Clara

    I am so pleased you have got Continuing Health Care as it can be such a battle to get it. I send my love to you and your mum. Take care

    Lesley x

  • thank u for the link. Trevor (my husband) has had the condition for 8 years and so far thank god we have managed but the falls amongst other things have increased and worsened so i might need some help soon.

  • hi claire

    how is your mum and yourself now?

    is hte continuing care working 4 her?

    i hope she is not sufferering too much

    jlol Jill

  • Thank you all for your comments and support, The continuing care is such a blessing, is meaning mum is getting better care than I was able to give her alone whilst working and running the home, I can spend more time being a daughter than running around stressed out trying to manage the whole situation. she is more compliant to showers and drinks with the carers than she is with me (sometimes!). also they were able to take immediate action when catheter suddenly started leaking and gave great pain one day when I was at work, district nurses also been fantastic.

    Do get district nurses on board asap all of you carers as they can fight for justification of the continuing care for you.

    Jill i SO hope you can move soon...you are in my thoughts and prayers ALL of you, you are great support to us all.

    Much love

    Clara

  • Hi Claire

    The move will b on 30april def.

    All signed and sealed as they say

    The apt will be grsat_=light snd bright

    Lol Jill

    :-)

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