Hi everyone

[Ashleelouise30]

Hi my name is Ashlee im 30 years old. My grandfather had sca3 and pasted it down to my uncle and my mother. My uncle just passed away at the age of 62 and my mother has been progressivley getting worse sense she was dignoised at the age of 42( she is now 57). I decieded maybe i should get the blood work done sense i see similiar balance issues in myself,and four days ago i got my results back showing up positive. Its very scary and i am definelty scared but i will not give this fight up! I got tested for the main fact of wanting children and knowing that if my results came back postive there would be a fifty fifty chance of my children having it i am not willing to take that chance. It is a heartbreaking thing i have to come to terms with. but i have to believe in the postive thinking and strengthing my muscles will prolong the condition and allow myslef to be self sufficent for a long time to come. Any advice or good thoughts would be greatly appreciated. Thank you!

[HarryB Administrator]

Hi Ashlee

I was diagnosed with an idiopathic cerebellar ataxia when I was 15. I am now 41. I made the decision not to have children and although still hard at times it was definitely the right decision for me.

I started doing Pilates (1 to 1) at the beginning of last year and I can't tell you how much it has helped me. It also contributed to me losing 2 stone in weight which has been extremely beneficial. I was fitter and stronger on my 40th birthday than I had ever been in my life!

Try not to think about the future too much. Concentrate on being healthy and happy now and you will find things much easier.

Best wishes

Harriet

[Ashleelouise30 in reply to HarryB]

Thank you for your response Harriet.

I am definelty thinking about taking up yoga or pilates i am also going to investin a bicylce.

It breaks my heart with the decision i have made to not have children i think alittle more than being dignoised but i can fathum the fact that if i did they could have it also. So in the end it is a good decision for me also.

Best wishes to you too

Ashlee

[Veteran250 in reply to Ashleelouise30]

Hi Ashlee........you are an awesome young lady deciding not to have children in case you pass on your medical problems, you are a young lady to be admired...... I was medically retired from work at aged 60 and I'm 73 now, just soldiering on and living life to the full, that's all you can do my lovely. xx 🌺😀

[Ashleelouise30 in reply to Veteran250]

That means alot to me thank you❤

[tleure]

Hi Ashlee. My grandfather also had SCA3 and passed it to both my uncle and mother. My uncle was 22 at diagnosis and passed when he was 36. My mom's diagnosis wasn't until late in life, after which, I'd already had to children. I was diagnosed 4 years ago, am now 47, and am progressing faster then mom. I just wish I'd had the choice NOT to pass this along. But sometimes all we can do is deal with what's in front of us.

[winch in reply to tleure]

I showed signs of CA in my late 20's but had already had two children. Although I saw a consultant I was not told of his findings and not told of the diagnosis until my late 40s by which time I had grandchildren. One of my children is now having balance symptoms and all I can do is pray that things will progress SLOWLY as my diagnosis was late onset, mild CA. I am now 71 and now use a rollator outside the home. My problem is that I have a significant tremor and people are always asking me if I have Parkinson's. I have had to adjust to people staring at me when out. My family are wonderful and I keep going, doing everything in the home, especially as my husband had a spinal operation just over 18 months ago. I take one day at a time and am thankful for what I can do. Had I been told the diagnosis earlier by the consultant I may not have had my children but selfishly feel blessed.

[HarryB Administrator in reply to winch]

Hi winch

You are blessed to have your children just as they are blessed to have you as their Mum. It is not selfish at all to think that.

Harriet

[winch]

Thank you HarryB for your kind comment.

[Dishy]

Hello all I'm testing my posts don't seem to be going anywhere? Hubby got ataxia.

Someone please reply so I know if this posted

Thanks

Pat

[tleure in reply to Dishy]

I see your post.

[Litty]

Ataxia in your family is so horrid for everyone.

It is so difficult when it comes to having children. We already had 2 beautiful children when I found out. I am so glad we did not have to decide. I was immediately sterilised though. I do feel guilty knowing and telling them that they might be like Grandad (I was his carer and he lived next-door) and later me.

It is interesting though I did ask my Dad about it and he did say he would not be here possibly if his mother had known. It really helped me too when very sadly soon after we found out I had ataxia coming if I lived long enough a close relative and a really good friend both suddenly dropped down dead. It helped me know there are a lot worse things out there and we all have to die of something.

Sorry to be so grumpy!

Tips are to stay as active for as long as possible. Never believe you cannot do something till you try x