Does anyone have a diagnosis called 'Cerebellar Cognitive Affective Syndrome' as a component to their ataxia? Looking for people to share this condition with me thanks. I would also like to know if there are any on-line support groups for the condition as well.
I am married to an Ataxia victim. It seems like they put a different name to his problem a couple times a year. The last one was Olivopontocerebellar Atrophy. It was first discovered in the Brainstem, a 'lesion' on the left side. 6 months to a year later there was one on the right side as well. The next MRI showed that the Cerebellum was shrinking. This has been going on since 3/2012. It is progressive, we've never been given a time line, and we've never asked. A walker is needed in order to get around for the past year. It has a lot of symptoms and we can account for all of them. What are your symptoms?
I have heard of Olivopontocerebellar Atrophy before Spouse. I may be wrong but I think this term name may have been replaced with another. MSA (Multiple System Atrophy) comes to mind. This means that the brain has more than one place of atrophy ie multiple. Once again, I may be wrong?
Hi Iain:)
" It’s now thought that the Cerebellum is responsible for monitoring both motor and non-motor functions"
I suspect many of us already had the same thoughts. Not only do we cope with physical limitations, cognition is challenged too.
Back in 2013, on the AVM survivors support group,someone had posted about ‘Cerebellar Cognitive Affective Syndrome’. This is not something new. See the alphabetical list on the right side of this page for AVM.
There is a fact sheet ‘Cognition and Emotion in Cerebellar Disorders’. It mentions ‘Cerebellar Cognitive Affective Syndrome’. See www.ataxia.org and click on FACT SHEETS.
As far as I’m aware there isn’t any separate support group for that particular syndrome.
I have read that Cognitive Behavior Therapy may help with concentration and mental focus. In the UK a short course is available by GP referral.
Best wishes 
xB
Spouse. My symptoms include: Balance and co-ordination, word articulation ie language problems (Difficulty in putting sentences together properly and forgetting words in sentences), Difficulty in thought processes eg misunderstanding the meanings of what is being said to me, concentration lapses, unable to multi-task, can be over emotional at times. Sometimes I also have problems with swallowing/choking.
Thanks for your reply Beryl. I'll have a look at the Ataxia UK site again. Could you tell me what the AVM survivors support group is thanks? Just noticed that the site you pointed out to me is the National Ataxia Foundation and not Ataxia UK. ta
Iain, Arteriovenous Malformation (AVM) refers to defects of the circulatory system that can lead to stroke.
One of their members had posted about CCAS in 2013. This is also a Ben’s Friends Support Group, see the alphabetical link on the right.
I’ll let you know if I get a reply to the CCAS Facebook group 
xB
Iain Stevenson said:
Thanks for your reply Beryl. I’ll have a look at the Ataxia UK site again. Could you tell me what the AVM survivors support group is thanks?
Thanks Beryl. Had a look at the NAF site and found the link. I've actually seen this before and I have to say that it provides the best most simplest explanation I've seen to date. Thanks also for the AMV site. I'll have a look
Hi Beryl. I just had a look at the AVM site and found the info on CCAS. The explanations still had me confused as I found it hard to understand. Perhaps I should post my CCAS question there. I don't have a clue what has caused me to have this condition. I'm not sure if AVM fits in with my problems either? Nobody has ever told me that I am at risk of having a stroke. I did have brain damage after I was run down by a bus when I was six years old but don't know if that has anything to do with AVM?
Hi Iain
I’m almost positive your Neurologist would have informed you before now of any connection.
The link to the site was only for information on CCAS.
I’ve sent a message to the contact person for CCAS on Facebook, I’ll let you know
if I get a reply :)xB
Hi Beryl. I just had a look at the AVM site and found the info on CCAS. The explanations still had me confused as I found it hard to understand. Perhaps I should post my CCAS question there. I don't have a clue what has caused me to have this condition. I'm not sure if AVM fits in with my problems either? Nobody has ever told me that I am at risk of having a stroke. I did have brain damage after I was run down by a bus when I was six years old but don't know if that has anything to do with AVM?
Good news Iain, the CCAS group must still be active, i had a reply accepting me.
If they haven’t yet got back to you, on their page, click on the picture of the group
contact, you’ll be able to send a message xB
Thanks Beryl. i'll do it now
Thanks a lot Beryl I've been added now to the CCAS facebook page.
Spouse said:
I think you are right lain. I recently read about MSA and I had an AhHa moment.
Iain Stevenson said:I have heard of Olivopontocerebellar Atrophy before Spouse. I may be wrong but I think this term name may have been replaced with another. MSA (Multiple System Atrophy) comes to mind. This means that the brain has more than one place of atrophy ie multiple. Once again, I may be wrong?
Spouse said:
Spouse said:I think you are right lain. I recently read about MSA and I had an AhHa moment.
Iain Stevenson said:I have heard of Olivopontocerebellar Atrophy before Spouse. I may be wrong but I think this term name may have been replaced with another. MSA (Multiple System Atrophy) comes to mind. This means that the brain has more than one place of atrophy ie multiple. Once again, I may be wrong?
Hi Iain, I was just wondering whether you are still active on this site and whether or not you were successful in locating others with CCAS? I too am looking for other people with the condition (looking in behalf of someone else).
Best Wishes
Danni