My husband is Richard and I am Nicky , about 14 months ago Richard started feeling dizzy all the time , he went to the Dr which lead on to a Neurologist , and an MRI . We received a letter to say he has General Atrophy , Cerebella Atrophy a Fossa Anachroid Cyst and White Matter Lesions . No explanation nothing just an appointment for a Neurosycometric assessment !! I didn’t know what any of it meant and googled it all . I took myself off and cried on my own , the one that stood out was the CA . I was glad at least I had an understanding but what does the future hold ? I have always joked and called my husband a male Mary Poppins ‘ practically Perfect in every way ‘ he really is the loveliest man and I count myself very lucky to have shared the last 7 years with him . Life has changed a lot in a short time in May he had to stop working because he felt unsafe to drive . We had to inform the DVLA of his condition and he has lost his licence . I feel the life he is living is not that of a 63 year old but one of an 83 year old . He is lonely and cannot get out and about much , if he could drive it would make so much difference. Because we have lost his salary and he is now getting SSP only I am working more to makes ends meet . I tell him he’s lucky as I’m a Carer so I’m trained to look after him 😉 I love my job but it’s hard work and sometimes I feel the work and home times feel blurred . Richard has felt down and dispondent and some days has a ‘what’s the point ‘ attitude . I go to work and rush in for an hour before going out again only to find small easy takes undone . I hurry to do them and take the dog out and I’m off again , only I’m angry that I’m doing everything and frustrated . Not once have I lost my temper though because as I say he is a lovely man . Although I’m 50 and I like to think I have a pretty good idea about life I have been saddened by some friends and family since this happened to Richard . I have explained his condition and told them to watch a 7 min video on YouTube as it explains it far better than me . I feel some don’t get it and some don’t seem bothered . It has added to my emotions and feelings of worry , upset , being unsure of the future to hurt , disappointment , anger and sadness . I came to a point where I had to think just keep the good ones really close and let the others go . We have an appointment today back with the Neurologist only because I’ve made a nusience of myself , she didn’t seem to have a plan to see him again anytime soon ! We also have an appointment at the CAB to find out about Medical Retirement and any benefits we could claim . I hope today we have more idea of what the future holds and have things explained . I have already got an appointment at the Ataxia clinic for December and Physio and an OT appointment is in the pipeline . I will keep on pushing forward and doing all I can for my lovely husband . This site is so useful and interesting and I’m so glad I found out about it .
My lovely husband: My husband is Richard and I am... - Ataxia UK
My lovely husband
I was signed off after diagnosis and, like you, had to Google Cerebellar Ataxia and was horrified. Since then. It has progressed and I feel angry that no medical person cares (some doctors have never heard of it!). I just smile and get on with, boring as it is, and try not to fall. I took early retirement (at 60) to make the most of our lives and started with this’s couple of years later. Physio came - gave me some exercises, put in a new stair rail and grab rail and signed me off. So, I just get on with life and buy what I need. Attendance Allowance (check that, not means tested and tax free) pays for a cleaner. You are right - you find out who are your friends! I have a great husband to help, who does everything. I am now 66 and each day is different, some better than others.
Hi Nicky 🙂 Being proactive, finding out as much as you can about this challenging condition, and any benefit entitlements, will stand you in good stead. Apart from the SCAs which are genetic, there are several other causes of Cerebellar Ataxia. It seems that many people fall into either one or two camps. The condition can creep on insidiously over a period of years, or it can appear virtually overnight. Mine is the former.
It is a shocking thing to deal with. As a person coping with Cerebellar Ataxia I feel incredibly robbed, and I suspect Richard feels very much the same. It’s important to realise that this situation can lead to a deep depression, which doesn’t help when new ways need to be found in coping with day to day life. My Neurologist said he thought I would benefit from a mild antidepressant, I wasn’t keen but I knew I needed something to make me feel more able to cope, and it did help me to get things into perspective.
Generally speaking, the majority of people coping with the condition are reviewed yearly by a Neurologist. Apart from this, symptoms are usually dealt with by a GP. It’s useful to pass on AtaxiaUK’s information pack for GP’s, the condition is rare and it’s not unheard of to find out that the GP doesn’t have any other patients diagnosed with it.
When you realise GP’s rarely have experience of caring for someone with Cerebellar Ataxia, it’s gives an inkling as to how other people will respond when you tell them about it. It’s hard to predict anybody’s reaction, personally I’ve never come across someone sufficiently interested to have a conversation about the condition, unless they were affected themselves.
This is where local Ataxia Support Groups can be very helpful. It can be enormously helpful to speak face to face with others coping with similar challenges. There’s no pressure to attend on a regular basis, but it can relieve some pressure to know that someone else actually feels the same way as you do. Many people have partners, or other family members with them at meetings, this can be helpful for anyone looking for support as a Carer. It shouldn’t be overlooked that Carers themselves need a lot of support.
Best wishes
🙂 xB
Having CA and PD, I can relate to all that you’ve stated. Unfortunately, I have come to the conclusion that concerning CA, some physicians don’t feel they can do much to help, so, like when I try to talk about feeling sort of dizzy and light headed, I don’t get anywhere. They check my blood pressure, sitting down and standing up, and then proceed to lecture me and say that everybody has times when they feel a little dizzy. My blood pressure is fine, etc. So then I’m left with the feeling that maybe I should not have complained about feeling dizzy. The doctor sees me for 15 minutes, once every 6 months. How can they fully determine my feelings of dizziness, that come and go, and just blow it off, like it’s normal. The point I’m making, is that when one has an ailment like CA, where they need some support, and then they are made to feel like the medical doctor in charge, could care less, that is not a good thing. People with CA and PD need medical support, especially when friends and family withdraw support, because they can’t deal with a family member being sick. The people on this forum, who suffer from Ataxia and/or Parkinson’s, have first hand knowledge of how to deal with the difficulties of living with these difficult ailments, on a day to day basis. So, actually, I believe I get the best support and answers from my fellow sufferers of Ataxia and/or Parkinson’s. I have come to realize, after a number of years of living with these ailments, that I can’t always count on some in the medical community to really understand what I’m going through, and how, or if, they can help me. I hope, for your sake, that you get the support you need from support groups, like this, and that you’ll be able to benefit from some of the interactions within the groups!
Thank you for replying , we went back for our 2nd Neurologist app yesterday . All I was hoping for was ROUGH idea of decline in my husbands condition. I wanted to know more about the future and be able to make some decisions . She said she doesn’t know why Richard has CA and wants to run a lot more tests . I asked if from the MRI she could rule out MS and a Stroke and she said yes . They took bloods yesterday and she wants a more thorough brain scan . She mentioned Parkinson’s Disease . Can I ask you please ? Is your CA caused because you have Parkinsons Disease ?
No! My CA is caused by an artery that has attached itself to the Cerebellum, at the Cerebellar pontine angle, where main nerve endings enter the Cerebellum. The nerves are compromised causing Cerebellar Ataxia. My Parkinson's is caused by degeneration of the nerve cells in the substantia nigra part of my brain. I have dizziness and balance problems. I was born with the CA problems, but they have gotten worse, due to artery enlargement. Operating in that region of the brain would be too risky.
Go and find out about all the benefits you can get I know the feeling all my grankids my daughter my son my husband all have ataxia type one my other son is unwell getting tests I work full time and have to keep going for them and keep strong and not show I'm upset I know exactly how you feel don't get depressed , there's always someone worse and sometimes it's worth going to a private nunerologist 200 pounds and look for one that does nhs work near you look and his profile on hospital website ask him to put you on his nhs list at your first visit they might know better treatment good luck and take care gets better lots of love XX
Thank you for replying it means a lot . We went to the CAB yesterday and feel hopeless . The only thing we can apply for is Contributionary ESA £73.10 a week for a year when the Statatory sick pay ends at Christmas . We have to think about moving now next year.
Check out Attendace Allowance
I know how it feels apply for dla it’s terrible dealing with this and then you’ve all the money things hope you get help lots of love xxxx
Hi Nichod so sorry to read your journey I too felt your distress it was like reading our story. I realize your post was 6 months ago and I hope you've got more help in this time?! Anyway I just wanted to say that try ringing carers trust they gave us lots of support and great advice. Try PIP if your husband is under 65 or attendance allowance of 65or over. Get a carers assessment from your local social care team. Hope that you've got some support coming to terms with this change in your lives x
Thank you for replying , Richard was diagnosed 2 weeks before Christmas with MSA-C . When they mentioned PPS I researched and had worked it out so it wasn’t a hugh shock . We have a PPI Claime running and receive basic rate contribution ESA . We have just put our house on the market to ease the situation . I am working more and he is on his own a lot . Also he has deteriorated and I feel we need a bungalow . I’m not going to life isn’t easy for either of of because of the same illness but in different ways . Friends and family are not great to be honest I just don’t think they get it !! I have begun to isolate myself a bit . I have no patience , time or the energy to be bothered with them . I work as a Carer and give an awful lot to people who deserve it . Anyway sometimes all I can do is hold myself together some days as I feel I’m on the edge . It’s all quite over whelming . All we can do is go forward and hope things improve . At least my Mr practically perfect in every way is still the amazing man I love and he makes me happy . In a lot of ways we are lucky x
Hi Nichod your doing amazingly to hold it all together. I tried for 18months and then it just got too much and I gave up work in doing so it helped my hubby as he wasn't so isolated. I do hope you get to chat to carers trust or carers UK as they can be a real help navigating help and just letting you rant cry whatever. They can also get you assessed with social services. We managed to get a carers assessment through them and I get help with housework and gardening as I just couldn't do it all, its not dependent on your income rather your need so.hopefully they can get you some practical support. I went to CAB too but they weren't very helpful, so might be an idea to get a 2nd opinion on what your eligible for. Is your GP supportive? Your right about people not getting it and being too tired to explain, but keep trying to reach out as best you can as you'll need that support in coming months. Bless you dearly as you grapple with the grief of loss of what was. You're amazing just keep connecting with those who have some idea of what your struggling with take care of both of you
It’s an awful condition and like most people I was told the name of my condition and told to google it and get on with things I will see my neurologist once a year and that’s it. But I won’t leave it like that, I’ve made contact with people in my area with ataxia but of cause there are so few, so I have joined the MS groups , they all have the same symptoms, you couldn’t tell them apart from the ataxia group, but they have so much more support, I go to a seated yoga class with them. And MS walks ( some people in scooters) and have met at the pub with them, I’m so glad I have found this support, I never had a huge group of friends and have found them unsympathetic, I told one of them and was so upset with what she said that I can’t repeat it! But I have found every person I have met that has ataxia or MS has been lovely, so I would suggest join any group where the symptoms are very similar, as it seems we aren’t given much support so we need to go looking for it, I have also found going on a gluten free diet has helped greatly
Hi happyface, I've also joined an MS group they have been very supportive as my symptoms are similar, I've found a lot of people really don't know or want to understand.
I didn't think I'd benefit from it as much as I have, its helps my mental health too, which has been wobbly at times xxx
Yes I find the ms group very important for my mental health, I would feel very alone with out it
HI, my husband who was my caregiver passed away. i have ataxia and can't drive due to constant dizziness. Did your husband find any relief? I too find people don't get it. thanks KAT
thanks! I have been given nothing either! But I do know most ataxia patients are dizzy.
Dear Nichod,
I am 65 and have been dealing with Episodic Ataxia 2/Spinocerebellar Ataxia 6 since I was 42.
I was able to continue teaching (ECSE) until the was 58. We then retired on disability and will be receiving Social Security when I am 66. My wife who was also an elementary education teacher, retired a year later to help me.
Dear was diagnosed with CA in 1995 @ UCLA, but had genetic testing done in 2014 that narrowed it down.
You need to find a Neurologist who specializes in Ataxia. Then a clinic. I go to the Cleveland Clinic Lou Ruvo Center for Brain 🧠 Health. There I see my Doc, PA, and get PT and Speech.
I hardly drive anymore, and we are selling our 2nd car 🚗. Don’t need it. I use a cane and u-step walker designed for Ataxia/Párkinson.
You need to get your husband moving. Even for short walks.
In our home 🏠 we have railings and grab bars.
Last year We went to Spain 🇪🇸 to visit our son. Yes, it was hard but I did it.
As far as friends and family, most don’t understand. Ataxia was a rare disorder that is not well known. After people spend time with you, then they get it; not very empathetic.
Most of us will live a normal life span. Just learn to cope.
I am trying not take up hobbies. Photography, scrapbook, writing stories on my company using voice recognition. My wife and I play scrabble, backgammon and dominos.
We see our grandkids.
CA, EA, and/ or SCA is not the end I the world. There are people with worse off conditions.
Stay positive.
Always,
Howard Silverman
I’m sat here reading your story and it feels like this is my story ! My husband is very poorly with this condition and now has msa to add to cerebella ataxia life has changed so much for the both of us in the last 2 years we have carers I’m twice a day and a great palative care nurse John has been fitted with a super pubic catheter as well due to fact it effects the bladder we are both young I’m nearly 58 and John 60 diagnosed 3 yrs ago I still juggle my job keep house look after my 3 dogs etc and still try and have a life ! I keep reading up on stuff but the future looks bleak ? Don’t mean to sound down but it is very hard Lesley
I understand and I’m so sorry . I was shocked to hear your husband has palative care after having CA and MSA both for quite short periods of time . We are currently at Hospital as my husband is having a DAT scan today . I don’t know if your husband has had one done ? Did a Neurologist give you any idea of time scale for a decline in your husbands condition when he was diagnosed ? I’m not sure they can tell you but it’s a question I would like the answer to for my husband . I feel I want to know everything so we know what the future holds . The DAT scan is to see if he has Parkinson’s Disease and we have to wait about 10 days for the results . It’s a roller coaster of emotions ! Try to keep smiling , I know it’s hard some days I could cry all day but most of the time it’s not too bad . Take care of yourself x
Yes he did have that test and several mri and recently another ct scan yes we do get quite a bit of help as it is progressive and it is progressing the out come not good but you know that how long ? They don’t know as it is very rare . He does have restbite care as well I went on holiday recently and we had live in care I’m shattered and I don’t get up in the night but I get mentally and physically drained so if you get offered help take it !
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