Need some help!!

Good am, I will preface this message by mentioning this is NOT regarding myself. However, it IS about a family member. I want to ask if YOU or anyone you know DIRECTLY has or has dealt with Cerebellar Ataxia? To be more specific Inherited Cerebellar Ataxia?? If so, I'd like the opportunity to talk with YOU or the person(s) as soon as possible. In addition, Ataxia is a group of progressive neurological diseases which affects coordination and speech. Its gender, color blind etc. I've got considerable information but I'm interested in the "human" side of it. Any & I mean ANY person(s) with this or knowing someone directly please get in contact with me. Lastly, I'm aware of the treatments @ UVA. Those have been addressed and now its on to Duke University for theirs.  Thanks in advance!

No experience to share but sending hugs & prayers.

Thanks so much. I think we honestly have all the information that is current. Prayers are definitely needed as this statistically death comes in a short period of time. One benefit is being older when the symptoms begin making their appearance, they take longer to develop fully. Although that is no consolation it means precious time still available. Its really hitting me differently because I have a VERY hard time dealing with "there is no cure." But, I take solace in the fact that I'm a believer in the Lord as is the family member and we take comfort in knowing this is just a stop on our journey. Love ya.

Like  Courtney no experience but prayers and hugs your way.

Thanks Melinda, prayers and exhausting all the avenues we can are what we'll do. I'm not kewl with simply sitting by and watching this happen so I'm becoming more & more educated and am going to become as proactive as possible. Prayers please!

I'm sorry -- wish I could help -- no experience or knowledge of this!  Best of luck, though! Cindy

Thanks Cindy until last year I'd never heard of this in this capacity. I'm familar with ALS (also known as Lou Gehrig's Disease) and MS which all of this exude similar symptoms and there are treatments for all but no cures. Its interesting what I'm learning. I appreciate your kind reply.

The wife of a co-worker is in a pretty advanced stage.  About a year ago I spent some time with her while her husband was on a business trip.  Her mind and wit were sharp but she is mostly wheelchair bound, can hardly read anymore, and speech is halting and a bit garbled. She and her sister inherited from their mother (now deceased).  Mother and father never told the children what the condition was or that she and her sister had the same condition.  Sister died a couple of years ago.

Thanks so much for your reply. I'm sorry to hear about her condition. We are already seeing speech, writing and physical changes. Mind & wit are for sure still in tact. Not to the wheelchair yet but walking with a cane and a pronounced limp. Yes, that is the case here. Inherited from the parents and both are deceased as well. There are 2 children and so far the other child has no symptoms or indications of it. As I mentioned next week there is a trip to Duke University who has been working on Cerebellar Ataxia extensively. We will see what treatments and such are available.