My name is Amanda and I have a Ataxia 26. Last research known showed that there was less than a hundred people with my type of a taxi. I’m sure they need to do further research to find out more. I am currently 46 years old but I was diagnosed around 42. I have a total of eight kids and two grandchildren all the kids are grown. Even though I have a hereditary form of a ataxia, no one can figure out who in my family has it. No one has exhibited any symptoms for at least two or three generations. So I worry about my two living biological children since they each have a 50% chance of getting this but I’m not allowing them to worry about it. My husband is also handicapped he is blind and an amputee and had a transplant. So I’m a caregiver for him and he is a caregiver for me. My Mobility sucks my Tremors suck a lot of other things just suck in general. I’m used to doing a lot of things going a lot of places and I’m having trouble realizing that I am disabled and I have to cut back. So I’m working on that. Good to meet you all I hope you have a wonderful holiday season.
Hi Amanda and welcome
I do so sympathise with your situation. I am much older - 80 next month and have a husband with alzheimer’s which is obviously progressive . My Ataxia is probably "late onset altho I am waiting results of of a complete. DNA panel which probably won’t help now.
I am lucky in that it only affects my balance - along with a degenerative spine.I am a mobility scooter user,
It is so very difficult to support family members when you have your own condition to deal with… Carers will be suporting my husband in the New Year.
Do hope you are able to enjoy the Festive season
I’m sorry to read about your life. I’ve had Ataxia for more than 50 years so I understand your frustration. We have to do the best we can. Let me just say welcome to the forum.
Wow. I couldn’t imagine being in your situation. I am fortunate that despite my husband’s disability he can do some stuff which helps me out a lot. But he can’t do everything of course. I couldn’t imagine going through the whole Alzheimer’s thing either. That’s just absolutely tragic and I feel for you both. Hope that you are able to continue on and I’m glad that you are leaning on caregivers at this point. We are still trying to figure it out here. Much love to you and blessings be upon you.
50 years is a long time to put up with your body not wanting to do what you wanted to do I’ve only been at this for a couple of years and it is frustrating to know end. I do like my mother says take it one day at a time it’s been rough for the last year or so but I’m making it slowly.
Welcome Amanda🙂
Sometimes…people do get a diagnosis and they have no knowledge of any family history relating to ataxia. Generally in such cases the gene is known as Recessive, it misses generations…and can manifest when ‘2 carriers’ have children.
Is it possible….your diagnosis is Recessive…SCAR26
Thank you for the information. My genetic test showed my EEF2 gene is affected. This means it is autosumnal dominant. I guess if it was going to start somewhere it was going to be me lol.
I can totally understand why you get frustrated over stuff you can’t do anymore. I was diagnosed with sca 48 in 2006 when I was 38 I’m 56 now but it’s so long ago I can’t remember what it’s like to be normal now . I guess the last time I kinda did ordinary things was 2014, so I’m pretty used to it now… Anyway welcome to the forum, hopefully you’ll get some useful information.
Is it possible….your diagnosis is Recessive…SCAR26
Sometimes…there seems no logic.
Take care xx
. I guess the last time I kinda did ordinary things was 2014, so I’m pretty used to it now… Anyway welcome to the forum, hopefully you’ll get some useful information.