I am very sorry to tell you that Litty sadly passed away on Tuesday this week (10/5/22). She was at home, very peaceful and surrounded by her family. Most importantly, she had managed to hang on for her grandson Milo to be born and had about a week of seeing him each day which brought a smile to her face. When she was very poorly in hospital in November she vowed that she would meet him.
She had been nil by mouth and using a PEG for all of her food, water and meds since November which meant a strict timetable and regime for which we received wonderful support from our Care Agency Helping Hands (manageress Berni and carers Noeline and Phoebe). Along with me and Litty's remaining sister Sarah, who is a retired GP, they did more to help us co-ordinate Litty's care and treatment than anyone in the NHS.
She really enjoyed her discussions on her and wanted to help by sharing her experience as much as possible.
I have been horrified at the lack of joined up thinking in the NHS, the ignorance around Cerebellar Cognitive Affective Syndrome, the difficulties in dealing with Continuing Health Care funding and don't get me started on the inhumanity of the PIP process. I also have first hand knowledge of how hard being a main carer is over a very long period whilst holding down a demanding leadership role in business - and that is from my very privileged position - my heart goes out to those doing it in less fortunate circumstances.
In my retirement at the end of this month, I intend to devote my efforts to trying to improve some of these issues for people with Ataxia.
Thank you all for your friendship with Litty which she treasured.
Ian
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Litty
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So sorry for your loss so very sad for you. Yes you are very right about the lack of reconistion that ataxia gets there is not enough help for sufferers- I care for my son who has cerabella ataxia and life is hard for him as with all other sufferers so many people we meet haven’t heard of ataxia. Take care of yourself x
Hello Ian,I'm so sorry for your loss of Litty. I know that it will be some consolation to you and your family to have been with her as she passed and also to have looked after her so well for so long. I didn't know her well but in her correspondence with others here she always struck me as someone kind and compassionate who maintained her sense of humour in the face of ataxia. My sincere condolences to you and your family.
Ian, You have my deepest condolences, at the loss of your beloved Litty! As one who has been diagnosed with Cerebellar Ataxia, and lived with it, for many years, I understand all the efforts made by caregivers, such as yourself, in caring for Litty! When one has to deal with living with Ataxia, caregivers are so important, for our well being! I enjoyed Litty’s postings, and it is sad to hear of her passing! May she Rest In Peace! I am so glad that you have decided to help improve issues for those who have Ataxia! I call it the forgotten neurological disorder, because I, and many others, have been sorta dismissed by a lack of concern, and treatment, and supportive groups, in regards to Ataxia, and how to manage, and live with it. Seeing a Doctor, for 20 minutes, twice a year, does little to help people learn to practically live, dealing with Ataxia symptoms and difficulties, on a daily basis! Thank you for taking such good care of Litty, and setting an example for quality management of Cerebellar Cognitive Affective Syndrome.
I am so sorry to hear of your loss. Living with ataxia is only made bearable by the family who love you, she very clearly had that.
It must be so very difficult for you, you want to try to be grateful that she is no longer suffering and struggling but you must be absolutely heartbroken by the enormity of the loss.
As I care for my sick son I am grateful for each breath he takes and whilst I am willing him to continue fighting in the hope that a curative solution is just around the corner, at the same time I mourn all his losses (mobility, speech, any control of his surroundings or what happens to him, etc) and each minute of any struggle he communicates just breaks my heart over and over.
I don’t know what you are going through but I can only imagine it must be just unbearable.
I am so very sorry for you, your children and all the people who knew her and who love her.
I am so sorry to hear about your wife’s passing. I like hearing the story of her determination in seeing her grandchild. I keep being hopeful on some of the genetic silencing treatments that are in the works - but as for current lack of treatments- so hard.
My condolences Ian, thanks for sharing that she passed away at home and surrounded by loved ones. I completely share your feelings about the difficulties for carers and families of ataxia sufferers. Litty also answered some of my questions, she was very supportive in this forum.
I was so sorry to hear of Litty's passing and send my condolences. I often used to see her posts and comments on here.
I lost my husband, who had cerebellar ataxia, last October so appreciate what you are going through. Not only have you lost a loved one but your role as her main carer has disappeared over night.
I wish you all the very best and think it fabulous that you have the strength to want to help others in their hour of need. Your expertise and experience will be invaluable in educating and supporting both professionals and those afflicted with Ataxia.
I'm so sorry to hear this news. My condolences and those of Ataxia UK to you, and all of your family.
Litty was one of the first people to start to post regularly when we opened this site 10 years ago. Her contributions have always been considered and thoughtful. I know lots of people will have found support and encouragement in her posts and that she will be sadly missed.
I agree with ThomasLondon that it's wonderful that you wish to continue to support people with ataxia. When you are ready, we would be really pleased to assist you in finding ways that you could do this, perhaps on the Helpline or as an NHS Ambassador locally or nationally? Please get in touch with us and we will work with you to find something that suits you.
Dear Ian, so sorry for the loss of Litty, she was such an encouragement and wise in her advice and support. As a wife and carer for Hubby I can't imagine your loss, praying you continue to know the love of your family as you support each other during this time. Litty really helped when we were trying to process the diagnosis. She will be missed dearly by many I'm sure just as she touched many. X
Ian, I’m sorry for your loss. I never met Litty, but it’s clear form her posts and the comment of others that she was a wonderful, generous person. All the best to you.
so sorry to hear about you and your family's loss. Her son offered to go to a mud run with my 17yr old son the once, he didn't go in the end as he was a bit shy. I don't know if your son knew, I think she nominated him. Take care of yourself and your family love Caro
My sympathies to you and to your family. Whenever I scanned the Ataxia site and noticed a post from Litty, I immediately clicked on it. Invariably it was worth reading, sensible and warmed by her humanity. Many of us will greatly miss her presence on the site, an indication of the massive sense of loss you must experience.
Hi Ian. I am very sorry for your loss. I remember a few years ago Litty sent me through the post a disabled blue badge clock to use whenever I wish to visit England or Wales. I'm from Scotland. I have Cerebellar Ataxia with 'Cerebellar Cognitive Affective Syndrome'. It saddens me the stigma attached to it but I overcame this and would share any information of my experience symptoms to anyone interested. My heart goes out to all of the family. God bless you all. Iain.Xx
Hello Ian, May I send my most sincere condolences to you and your family for the loss of Litty, we used to message now and again, she was an amazing lady, and will be missed in this Ataxia community.
Sadly no better with my mobility, stops me doing most things, but hey, I get fed up with people moaning, and distance myself from those that do. The weather is awful today, so I suppose I had best do a bit of polishing!
We held a very special celebration of Litty's life at home on the farm where we live and where she was born last Wednesday. We started in my A Frame in my wood - with drinks and a display of Litty's ceramic artwork. We then had a celebrant led service in a marquee in the meadow in the wood. That included reflections from family and friends - and a piece written for the occasion by Litty herself.
We played about 6 of her favourite pieces of music all of which have a story behind them. Our son Harvey had put together beautiful slideshows for each of those and to conclude he had edited a quite beautiful video of her life which I share below. (It's about 11 minutes - sound up loud and tissues to the ready. It includes Inner Smile by Texas, we saw them twice live including Litty's last outing on 5/3/22).
We then drove her on a tractor and trailer past the only four houses she had ever lived in the the tiny churchyard at the bottom of the lane.
It was exhausting and emotional but it was the send of she wanted and was quite beautiful.
Thanks everyone - we quoted some of your lovely comments in the service.
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