I think that it is time to share my story and I hope by sharing it will help someone.
Since I could remember my mother had dealt with cerebellar ataxia. I had to watch her struggle her whole life. She could not drive or walk without a cane or walker. It was hard for her to talk on the phone cause people could not understand her and thought that she was drunk. I had to watch her try and do what she could raising two kids on her own.
Then she broke her ankle and was never the same again she ended up in a wheel chair. Me and my sister;got older and had to take care of her. She had trouble with eat, washing herself, going to the bathroom, and everything that is simple for most people.
As time went on she got worst and we had no choice but to put her in a nursing home (it broke my heart). I tried different living situation to get her out of there but nothing seem to work and it always came back to the nursing home. A few years went by and she ended up getting an infection that ended up making her unable to talk. I work really hard with her social worker to try to get her home.
By the time that me and my sister and found a way to get her home it was to late. We had to but her on hospice. We ended up being able to bring her to my sister's. She was only there for the weekend and then she ended dying on Sunday September 18th,2012
It broke my heart when she left a piece of me left that I still have not be able to fill and don't think I can. My point is sharing this story with everyone is to help someone and maybe this will not happen again. Also to try and get this off my chest.
Then I found out that I had the same ataxia that she had. I always new something was wrong but did not want to have the test done. My mother had always told me that there was a good chance that I had it too. Then I met someone who talked me into getting the test done. So we would know if I had it or not and we could deal with it. I thought for sure once we knew that I did that I would be left alone, but that didn't happen to my surprise.
My fear is that I am going to end up like my mother. I have started seeing a lot of changes in myself. I'm no longer able to do the simple things in life without trouble. Its hard for me to walk long distances, I'm shaking a lot more, and I'm starting to trip over myself. I'm afraid soon I will not be able to recognize myself, and all the people that I love will not be able either. I do not want to become a burden on my love ones. I fear that it will get to much on my love ones, and I too will end up alone. I know that I can not change anything and that I just have to deal with whatever comes my way. The worst fear is not knowing what will happen and where I'll be in a few years.I really just want to stay me
If you did everything in your power for your Mother, then you should not feel guilty. That's my biggest fear that I would end up in a nursing home if something happens to my husband, but I accept my fate and believe that if it comes to that then my hearts says amen to God's will. I cannot dwell on tomorrow but has to learn to live today. Remember SCA is heredity and you know that maybe you too will become a victim like your Mother. I do now know if you are spiritual but find some higher power to believe in and do whatever you can to work through your fear. None of us wants to be burden on anyone but know that your loves one would be there for you like you were for your Mother.
Very sad story Anita.. I am 72 and rely very much on my husband .. I have married son but would hate to be a burden to him and his family. My mother took fatal overdose when she was 57 and now I know just how she felt. She was never diagnosed with CA as she had rheumatoid arthritis and ataxia wasnt know about back in 1973 so it wasnt suspected.
It does sound like you have symptoms of ataxia but everyone is different. If you live sensibly with exercise and healthy diet, you may be lucky. It is very exhausting being 'careful' every waking hour but, as you know, having a fall can have devastating consequences. Everyone doesnt get a speech problem .. I am told that consulting speech therapist can be a preventative measure although I confess I havent done so.
Yes I agree with the two post above. Take care of every health issue as it comes up, educate your family as what symptoms may appear. It is important they understand so they can care for you correctly but also so they can watch for symptoms in themselves. I am trying to plan ahead, getting my house in order, organizing, and simplifying. I also want to have a set of cards with simple statements on them just incase this affects my speech (I am noticing swallowing issues already). I think the unknown is harder than knowing and just planning. Good luck jaime
Anita, you did the best you could, and your mother would have been very proud of that.
Most of us here experience the same symptoms, to a lessor or greater degree, we have
to cope as best we can. We’re lucky that we now have greater knowledge about Ataxia
and generally know where to source help and advice.
Isn’t it good to know you have friends on this site who will always be able to understand
what you are coping with? Emotional support and practical advice is always available.
Look after yourself. Best wishes xB
Yes Beryl it is nice to know there are people out there to know how I feel and that are going through the same thing that I am. I am so glad that I have found this site. Its really has help a lot.
Anita your story is so similar to mine. My dear dad passed away on 27th August 2012 and his decline was just like your mother. I truely feel your pain and guilt. I feel guilty for not doing more and not being there more for him, I helped a lot with his care but you always get the feeling that more could have been done. I miss dad terribly and it breaks my heart living in a world without him, I’m actually sat here in tears reading your story, it hurts so much without him. I am due to see a genetics consultant next week to see if I have inherited my dads SCA. Sending you a hug and best wishes, Gail. xxx
Dear Gail and Anita,
You both did your best for your Dad and Mom, and this is what matters. I have no doubt they appreciated your help, more than they probably could express it.
I wish for both of you to find peace in your mind about them.
Take care and stay a well as possible.
I had one of the swallowing test recently at the hospital. It wasn't too bad. Swallow different textures of foods and drink, barium in the food was the worst part. I have had worse tests. She gave me some pointers and said this will be the baseline test for me.
twirlie girl said:
Yes I agree with the two post above. Take care of every health issue as it comes up, educate your family as what symptoms may appear. It is important they understand so they can care for you correctly but also so they can watch for symptoms in themselves. I am trying to plan ahead, getting my house in order, organizing, and simplifying. I also want to have a set of cards with simple statements on them just incase this affects my speech (I am noticing swallowing issues already). I think the unknown is harder than knowing and just planning. Good luck jaime
Dear Anita, Disabled or not, no one knows what the future holds. Personally, I was diagnosed with ataxia eleven years ago. Although it's progressing, I try to live my life on day at a time, the best I can. I embrace all I can still do, rather than dwell on what I can't. Although it's easier and safer not to, I try to stay as active as I can and exercise for strength and balance. Also, please don't feel bad about your mom, as you lovingly did what was best for her! Ataxia is extremely frustrating and challenging, but don't ever give up or give in! Thanks for sharing your story..., ;o)
I fe e l so sorry for you being bo t h a carer and suffe re r.My gene pool is poor.My fa ther had Parkinsons and he had it for 15 years.That blighted my childhoood .He was 50 when it was diagnosed.My mother had Alzheimers for 5 years and died in August.I was diagnosed with CA about 7 years ago in my` late 40s.Even though ther e has been various t ragedies in our lives I feel priviledged now as I relied on past skills and am a much berttter person now-less of a clanging cymbal.
I do associate with the feeeling of guilt.I was useless as a daughter in the last few years as I could not do anything.
However it sounds as if you were ther e and that is more immportant than doing.You have made the choice and did your best with your circumst ances.Chin up.Don't beat yourself up about it.
If your problem is nutritional you can stop the progression now by finding the deficiency and supplementing with the deficient nutrient. I know of one blood test that will find the deficiency it is called Spectracell micronutrient test. Let me know if you are interested. I can give you all the info.