I haven’t come on this site properly in years but thought its about time I did.
My name is Stacey I am24 years old and have episodic ataxia type 2
I have some really bad days where I’m depressed and some good days where I feel great.
One thing iv been thinking lately is I want to make people more aware of ataxia and what it is but god knows where to start with it.
Hope to hear from some of you if have any questions or just fancy a chat or share anything please feel free to reply
Stacey, just want to say hi to you!
..good to read you..I'm new here too and always check in daily for the latest up-dates :-)
Hi Stacey just wanted to say hello too and that I understand your feelings.
I try to keep control of things but sometimes my husband over rules me and I have to grit my teeth and face up to things. My neuro physio builds my confidence up by getting me to prove to myself just what I am capable of but it's not like that at home!! or indeed in company.
I shall be with my son and his wife and three grandchildren at a hired cottage on a farm for Christmas... that is going to be well out of my comfort zone but at least my family will be there for me. xx
I think everybody most likely already knows this, but I wanted to mention there is an episodic ataxia group on Facebook. I find it very helpful because all the posts are specific to our condition.
Hi Stacey. I share your desire to increase awareness about ataxia. Its difficult to do right now, because I’ve decided not tell most of the family until after the holidays. I was diagnosed in November.
After seeing that special on the brothers in California with ataxia that started walk and roll to raise awareness, I want to start one where I live.
My heart goes out to you..so young. I at least had a full life until I was 51 and then iloca hopped in (idiopathic late-onset cerebellar ataxia). Depression is part of the deal I guess, whichever type of ataxia you have. So we are doubly blessed..NOT. But there's good news too: I have become a very spiritual person over the last 12 years. Not just at once and from the beginning but kinda like it gradually growing in me. I sense things, see things in people and in nature all around me, which feels like a gift actually. To be able to focus on the CAN DO's is also one of them. There's NO room for pity, so don't let it enter. Stay your own boss, right. That way you can kinda 'control' the depressed stages and get rid of them because they are getting us nowhere. If they were the 'cure' we would all be crying buckets full wouldn't we.Well anyway, I could blabber on for hours but then this would become quite a book. So stopping right now. Take good care of yourself..hugs from Holland, Elle.
Hi Stacey. I have EA2 also. Same as you good and bad days. My depression is much better since my neuro changed my Zoloft to venalfaxine. I’m a bit older than you. 62. I have been educating people around me as much as possible. Once they know what it is they help spread the word. I have written to the Dr. Oz show but never got an answer. It would be very helpful to get him to discuss this condition. Maybe if people on this site all wrote in he might do a segment on ataxia.
Glad you made it back to this site. Even if I don’t write a lot on here I read it daily and it helps me to know I’m not alone.
Big Ellie. Thank you so much. I did not know about the Facebook page. Going to check it out right now
Dear Stacey, I do not have EA2, but Sporadic Cerebellar Ataxia (idiopathic/unknown cause). I was diagnosed eleven years ago when I was 49 years young. I have my symptoms 24/7 and, like yours, mine is progressive. Althugh I'm much older then you, I do understand how you feel. Ataxia is very frustrating and challenging! I take an antidepressant medication daily which has been a huge help for me emotionally! Anyway, just know you are not alone in your journey, as this site has wonderful people for support and understanding! Wish I had some ideas about how to make people aware of ataxia, as I certainly had never heard of it when I was diagnosed! My best to you..., ;o)
I don't remember how it came up, but one person on here came up with something I think is really smart - she has cards printed up with Ataxia and many of the symptoms on it, so she doesn't have to repeat herself 200/day. She hands them out to whoever shows an interest or curiosity.
Now that winter's arrived here in the Northern Hemisphere we, who have difficulties with snow, have fewer opportunities to see people, but with the holidays coming soon, most of us go out when we can (not me, I stay home on weekends) to shop, do physio, or just go to the library (check with the handicapped bus service in your area-the people who work there are usually very nice and extremely helpful).
I don't know if this is helpful to you, but coming to this site gives me ideas and options-I like that.
Stacey.......I will be happy to give you my thoughts about Ataxia and how to give people an idea on how it works in someones life.
First of all there are many different kinds. Mine being Cerebelum Ataxia and it is hereditary. Shortyly after my diagnose my younger sister (2 yrs younger) came down with the same symptoms in 2010. Our last born sibling is our brother 2 yrs. younger than my younger sister. He now has been diagnosed with the same thing. The two older sisters are ok. I pray it stays that way.
I want to make this simple for you to understand. Ataxia is something in life that has no cure what so ever. If a person wants to waste their time and money hoping a doctor has any answers they are doing just that, wasting their time and money. I go once a year to be checked over to let them keep track of how my progress has worsened. That is it! I do not get my hopes up for anything for a cure. It would have to be proven to me first. I made the decision right when I was diagnosed that Ataxia is what it is and I will live life until this disease has taken me. I myself am going on my fifth year with this and started with a slight balance problem and to this day I am unable to walk in the open without a four wheel walker, My balance is awful. I am having short time memory problems and now have many other health symptoms.
So to spend time worrying is not an obtion with me. I am here and able to live on earth to the best way possible. My life goes on and I still try to do for myself using good safety skills. I now take my time on every move I make. As far as making people aware of this disease. They only need to understand right away that what is being told to them is all the awareness they need. This is a disease that you have to accept that it is what it is. Make up your mind right away that you are worth living life so Live Life. Always keep in mind that someone else may be suffering with more than we are.
I do believe keeping a positive attitude and loving your life is the key to happiness and of course including our God in life to talk with. Well wishes to all who live life with this disease. Advise from me is to get on with life and don't let this take over your thoughts. Make life easier by accepting what is and be happy your still living to spend time with your loved ones.
I am 24 also.
I have ataxia but no idea what kind because it was caused by chemotherapy and my doctors just brush it off.
I have bad days when I realize that it is going to get worse.