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
Written by
clara
To view profiles and participate in discussions please or .
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.
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.
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.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
We hope we've caught it early and it will heal quickly.
Tears have all dried up
Just having a word with myself
Sharing Locations An Update
Hi everyone. Does anyone have any experience of the medication Clonazepam for rigidity problems?
