need to sound off hope you don't mind

[Lilakee]

Hi

My first post. I was diagnosed with cerebellar ataxia in February. I count myself as being fortunate that I was 77 years old and lets face it, its a lucky soul who hasn't got some ailment by that age and learning my condition could have affected me decades earlier. My legs, speech and handwriting are affected. But come July, I fell breaking my foot. My husband and I had just got a beautiful puppy weeks earlier. I got out of hospital and 10 days later my husband suddenly passed away. Friends and family rallied around and I felt I was coping as best I could. I don't get out and about but light housework easy meals and personal care is no worry. I have folks who will walk pup and although she can be a little devil, she is a great comfort and stops me being self absorbed. Up to now, support from various agencies has been super but this week I had visit from a "boss" who decided it would be better to rip part of home apart, poo pooed what previous experts had suggested, wanted to block access (the fire brigade who also visited were aghast). I was humiliated by her attitude, made to feel helpless with no hope. Up to now I have been pragmatic and positive but I cried every morning until I finally thankfully got angry. I have alternative plans which she didn't even give me a chance to propose. Anyway I will be quite happy to tell her I don't want to ask the local authority to spend thousands on my house. My family and I will decide. I'm not ignorant of future prospects and not ungrateful for proposed help. But surely I can still be the arbiter of life with ataxia.

[Jellybean75]

how awful for someone try and instil their views on what you should do to your house without even considering how you would like things to be. I too am in my 70's and was diagnosed 2 years ago. GP arranged for OT to visit and assess. She organised several things to be delivered free by Red Cross - raised toilet seats, perching stool, shower chair, walking frame and extra stair banister. She suggested stairlift for the future (which I purchased about a year ago). I also bought a 4 wheel rollator to use outdoors and I've got smaller rollators for upstairs and down stairs. Are you able to get any of these things through your GP/OT ? Any walking aid or bathing aid is beneficial and although the NHS stuff is only basic it serves its purpose if you're not able to buy anything more costly. Hope all this helps and glad you have family around to support you xx

[Lilakee in reply to Jellybean75]

thank so much. I like the idea of smaller rollators and maybe neater zimmers.

[Lidldidl]

Oh my goodness Lilakee, it’s no wonder you need to vent 😫. I’m so sorry for your loss & sending sincere sympathies.

Whereabouts are you in the UK? We live in The Wirral & have had nothing but the best possible help from NHS & Council. I’m assuming this ‘boss’ is council? It’s a tough battle enough living with Ataxia, without having added stress & problems from authorities. On the positive side, sounds like your family are supportive & also you’ve got the oomph to make your objections heard.

Wishing you well & do keep us updated with your battle. Stay strong & cuddle your pup often. (Wish we had one too) xx

[Lilakee in reply to Lidldidl]

thanks x

[wobblybee]

Sincere condolences xx

Social Services etc.. definitely have their place but…surely their job is to instil confidence and not demoralise someone…we all like to feel as capable as possible..for as long as possible, it’s essential for morale and going forward.

[Lilakee in reply to wobblybee]

I have never felt less confident. The firewoman insisted on hugging me when she came to visit a very upset me. It wasn't a brawny fireman but she did the trick! X