i was born with a rare condition known as ataxia telangiectasia (A-T). Although i was born with this, I was born with this I was not diagnosed by doctors until my mid teens. Since A-T is so rare even by ataxia standards not much is known about it, and what is known isn't very nice. In fact the life expency of people born with this is not so good (i have never actually talked to anyone else with A-T). But besides all the bad I still have a good life, but don't think i would recommend this condition to anyone :) or :( depending how you read into it... i live in a fairly small city of 15 000 people so there has not been much chance for me to talk to people with this type of condition. Talking to doctors and family about my condition is all well and good, but somtimes it is nice to talk to people that can relate!
Nothing to add really. ONLY..you obviously enjoy the water Bob and water is known to be very soothing, So get as much as you can. I do.
good to know this. I am relay appreciate our wife's help for us with this condition. yes of course wife help for us is very important and we need it. I used to depend on her for long time before my illness started during the years before this condition and during my PhD time and after this, now, my dependency on her is getting bigger and increased. Thanks for her and for all wifes like this.
mibadge said:
I used to do most of the cooking because I enjoyed it and it was my way of giving back to my wife.Now she does all the cooking and everying else.I don't know what I'd do without her.There are all kinds of angles out there.
Hi everyone!
I'm glad you are having a discussion on this thread, but we hoping to have more responses to the original question, which is:
What has this website LivingwithAtaxia by Ben's Friends meant to you?
Anyone??
Thanks!
Not easily pleased huh Sharon:):) the fact that we are here says enough I would think. BUT, a huge YEAHYEAH for Ben's Friends, okay now:):)
Sharon#3sca said:
Hi everyone!
I'm glad you are having a discussion on this thread, but we hoping to have more responses to the original question, which is:
What has this website LivingwithAtaxia by Ben's Friends meant to you?
Anyone??Thanks!
Elle,
LOL. yes that thought went through my mind às well 
Even as I wrote my own story my reason was about all of us, not just about me. I may have sounded a bit like a mother 
And I know words written here are always from the heart. Thanks, Elle.
Sharon
Elle,
LOL. yes that thought went through my mind às well :-) Even as I wrote my own story my reason was about all of us, not just about me. I may have sounded a bit like a mother ;-) And I know words written here are always from the heart. Thanks, Elle.
Sharon
Elle Strik said:
Not easily pleased huh Sharon:):) the fact that we are here says enough I would think. BUT, a huge YEAHYEAH for Ben's Friends, okay now:):)
Sharon#3sca said:Hi everyone!
I'm glad you are having a discussion on this thread, but we hoping to have more responses to the original question, which is:
What has this website LivingwithAtaxia by Ben's Friends meant to you?
Anyone??Thanks!
Hello, Finding LWA site through Ben's Friends has made me feel less "alone" with ataxia! I was diagnosed with Sporadic Cerebellar Ataxia (unknown cause, progressive, symptoms 24/7) eleven years ago, although looking back, I had very minor symptoms starting about eight years before diagnosis. It took me about a year before I went to my doctor, as I had always been healthy, active and athletic, and couldn't believe something might be wrong with me. My doctor did some testing and ended up sending me to a team of neurologists that diagnosed my ataxia. I had never even heard the word "ataxia" and had no idea what was to come. My ataxia has progressed over the years, as I use a cane now when I leave my home (to prevent falls) and a rollator for pleasure walking outside. I've had genetic testing for the known dominant and recessive types of ataxia, which was all negative. No one in my family, as far back as we know has/had ataxia, except me. I'm hoping to eventually have genetic "genome" testing, as, although there's no cure, it would give me some peace of mind to know the reason why I have this. I've learned so much about ataxia over the years being on the LWA site and hope I've helped others a bit, as I'm a ''greeter" for this site. Thank you Ben's Friends!!!! ;o)
your story with ATAXIA is very impressive and I am having many points of similarity with your words that is why your story is impressive for me, except I think my ATAXIA is genetic. I am wondering if you can help me to so this genetic test for me to find the gene that cause this ataxia. I can send you my blood sample to help me to do this genetic test if this possible for you?
I know a company can do genome testing for you if you like
Otogenetics Triple Guarantee: Coverage/Price/Turnaround Time
400 Pinnacle Way, Suite 435
Norcross, GA 30071
USA
Toll free: 1-855-otogene
Thanks
Best Regards
Ahmed
My wife an I just returned from a visit with my youngest daughter and her husband who live in Royal Oak (Detroit).It was very chalengeing(sic) but I,m still alive.Thank God my wife pushes me to do these things.My biggest problem with a long car trip ( about 3 hours each way ) is that my legs ache and I need to get out of the car and walk around once in awhile.Does anyone else have this problem?It's hard to accept help,but I'm getting better at it.
Now my big challenge.............our first snow and trying to get around in it.Of course with the help of my wife.At the rate my ataxia is advancing,this will probably be the last winter that I'll be able to get around in the "white stuff" even with help. At least I've been able to get around longer then I had expected. Ron
NO need to walk around in it Ron:) just ENJOY the SIGHT of these white fluffs and the amazing carpeting outside.I do.
mibadge said:
My wife an I just returned from a visit with my youngest daughter and her husband who live in Royal Oak (Detroit).It was very chalengeing(sic) but I,m still alive.Thank God my wife pushes me to do these things.My biggest problem with a long car trip ( about 3 hours each way ) is that my legs ache and I need to get out of the car and walk around once in awhile.Does anyone else have this problem?It's hard to accept help,but I'm getting better at it.
Now my big challenge.............our first snow and trying to get around in it.Of course with the help of my wife.At the rate my ataxia is advancing,this will probably be the last winter that I'll be able to get around in the "white stuff" even with help. At least I've been able to get around longer then I had expected. Ron
I have had ataxia about 5yrs, it started with a sore knee and slowly progressed until I now use forearm crutches, walker, and wheelchair. I feel lucky that standing is pretty easy so there are a lot of things I can do like cooking, laundry and shopping. I can get by at home without the chair most of the time but when you need to move around in a hurry the wheelchair is very handy. The only thing that worries me is the progression of the ataxia and where it stops me from doing for myself. Jerry
Dear Ron, Kudos to you for continuing to do things, even though it's challenging with ataxia. Your wife sounds like your biggest cheerleader, bless her heart! Although ataxia is extremely frustrating and challenging, it's so important to continue to do things to the best of your ability. I try to be as active as possible, as I don't want to miss out on "life"...,;o)
Sharon#3sca said:
I have hereditary SCA3. Both my grandmother and my mother had to deal with this not even knowing what it was. After my diagnosis I was able to continue working for some time before I had to retire early due to advancing symptoms.. it was only a few months after I got done working that I decided it was time to find people like myself. After I joined Living with Ataxia I knew it was a good move. There were so many people with my symptoms and many more symptoms that I had never experienced as I learned more about the many faces of ataxia.. I was appalled at how many were going through terrible times with no help available to them . I wrote a blog about how meds have helped me, but I guess I am one of the lucky ones as for many my meds are useless to them. Four months after joining Living with Ataxia, I was asked if I wanted to become a moderator. So now I feel even more helpful in that position as I help new members come on board and I learn more about the troubles of those with ataxia. So many of these members get little or no help from doctors that say that there is nothing they can do and send them out the door. This website is their only link to finding some answers to questions their Dr couldn't even help them with. This the only place they can talk freely about their problems dealing with their ataxia, and hopefully get some good information as well. Thank you for making sure it's available to us.
Hi Sharon,
I too have hereditary SCA3. Both my grandfather and my father had to deal with this disease we did not know until early 2000.
I am so happy to be part of this group and always learning from others. Thank you for sharing it lets me not be alone.
Nana
Sharon#3sca said:
I have hereditary SCA3. Both my grandmother and my mother had to deal with this not even knowing what it was. After my diagnosis I was able to continue working for some time before I had to retire early due to advancing symptoms.. it was only a few months after I got done working that I decided it was time to find people like myself. After I joined Living with Ataxia I knew it was a good move. There were so many people with my symptoms and many more symptoms that I had never experienced as I learned more about the many faces of ataxia.. I was appalled at how many were going through terrible times with no help available to them . I wrote a blog about how meds have helped me, but I guess I am one of the lucky ones as for many my meds are useless to them. Four months after joining Living with Ataxia, I was asked if I wanted to become a moderator. So now I feel even more helpful in that position as I help new members come on board and I learn more about the troubles of those with ataxia. So many of these members get little or no help from doctors that say that there is nothing they can do and send them out the door. This website is their only link to finding some answers to questions their Dr couldn't even help them with. This the only place they can talk freely about their problems dealing with their ataxia, and hopefully get some good information as well. Thank you for making sure it's available to us.
When I was diagnosed in January of 2009 initially my wife and I were relieved - we were thinking that I could be told a diagnosis of MS, so when we heard Ataxia it was a relief and quickly followed by "What's Ataxia?" No one I knew had ever heard of it, so finding this website (using Google) was great - just realizing that I'm not alone with this was a huge relief!
My symptoms are not too bad (I don't need to use any aids for walking yet - I only use them for travelling to let people know not to bump into me) so I try to live a normal life as much as I can. I do have a APP (Ontario's form of the Handicap Parking Permit) that I do not use often - I try not to unless I need it. Before I was diagnosed I was very judgemental of people using those who didn't "look" like they needed it (but not confronting them on it) - now I know better!
Best wishes to everyone dealing with this!
Let me start by Thanking such caring people who take time to give an opportunity to vent about our Ataxia disease. I count on being able to write my thoughts down only when I feel the need to. Ben's Friends is where I can relate and hopefully help others on how I feel at certain stages of this so called journey. Thanks to all you hard working Ben's friends for caring enough to give us our own space. You really should know how much Bens Friends means to many.
In keeping my situation short on how I did find I had ataxia let me just say at first my balance became my first clue while hanging clothes at my daughters. Then came trying to jump up and down with children with no good results on the attempt.
My biggest concern after this was my balance in 2013 worsened within months. After therapy and many doctors. I then went to see a neurologist. He told me what the problem was. Also wanted to perform Surgery on my spine due to a cyst on my spine. This I refused and went to get a 2nd opinion from a more reliable medical source. This source felt we should wait 1 yr. to see if cyst will dissolve. Which it did. No surgery needed. This all took place during the first 4 yrs. starting in 2010. After being told what I had was Cerebellum Ataxia and has been discovered in the past 3 yrs that it is also hereditary. As of 3 yrs ago my younger sister has also came down with the signs. As well as my young brother this last spring 2015. I have two older sisters 2 to 4 years difference who seem to be doing alright. Prayers for them to not get this. I have chosen to only see doctors if necessary. I have fallen many times and split my head open but healed fine. Otherwise my doctors consist of only going for regular checks and other issues they can control.. after all two neurologist have told me it is not curable so why waist money for things that will never happen. As for this moment I have seen a change and why paint a pretty picture when it's not. My balance has worsened and my memory I and others have noticed is causing an issue. Seems to be the short time memory is happening. I have neuropathy in both legs up to the knees, still walking with a four wheel walker. The time for a wheel chair is coming possibly this year sometime. I get so wobbled in the head when my eyes move a lot with feet movement. I now have someone clean my home and I keep up with picking things up/folding clothes/cooking slowly/bills I do (has to be quiet)/riding to the store in my scooter weather permitted. My sister a year ahead of me takes me places to get out and I know she is worried for not just me but herself and what lies ahead. So you see there is no pretty picture to talk of and I would be lying if I acted as if I were not afraid of what lies ahead. Truth is yes, I am so darn scared because I know no one out there will be able to help. I wouldn't expect some would understand this only if they were a victim themselves.
In all of this we go through I only hope for many that they are among people who will be there for them and show love and understanding as to what the future holds for those with Ataxia. For me now, I still believe. What I have to deal with is what it is and I will do whatever I have to do to cope. The Love in my heart that I carry for those who love me is so strong that I will do my very best to keep them from seeing me down and depressed because of this uncurable disease called Ataxia. It is what it is and I will keep myself up and cheerful as long as I am able. Feeling sorry that I have Ataxia is not on the list for feeling. Live for today and figure tomorrow out when it gets here. For now I will enjoy my loving family and be glad there is still life to live with them. God so loves me and I soooo love God back!
Addagirl Vickie:) and thank you for sharing!
Vickie Welsh said:
Let me start by Thanking such caring people who take time to give an opportunity to vent about our Ataxia disease. I count on being able to write my thoughts down only when I feel the need to. Ben's Friends is where I can relate and hopefully help others on how I feel at certain stages of this so called journey. Thanks to all you hard working Ben's friends for caring enough to give us our own space. You really should know how much Bens Friends means to many.
In keeping my situation short on how I did find I had ataxia let me just say at first my balance became my first clue while hanging clothes at my daughters. Then came trying to jump up and down with children with no good results on the attempt.
My biggest concern after this was my balance in 2013 worsened within months. After therapy and many doctors. I then went to see a neurologist. He told me what the problem was. Also wanted to perform Surgery on my spine due to a cyst on my spine. This I refused and went to get a 2nd opinion from a more reliable medical source. This source felt we should wait 1 yr. to see if cyst will dissolve. Which it did. No surgery needed. This all took place during the first 4 yrs. starting in 2010. After being told what I had was Cerebellum Ataxia and has been discovered in the past 3 yrs that it is also hereditary. As of 3 yrs ago my younger sister has also came down with the signs. As well as my young brother this last spring 2015. I have two older sisters 2 to 4 years difference who seem to be doing alright. Prayers for them to not get this. I have chosen to only see doctors if necessary. I have fallen many times and split my head open but healed fine. Otherwise my doctors consist of only going for regular checks and other issues they can control.. after all two neurologist have told me it is not curable so why waist money for things that will never happen. As for this moment I have seen a change and why paint a pretty picture when it's not. My balance has worsened and my memory I and others have noticed is causing an issue. Seems to be the short time memory is happening. I have neuropathy in both legs up to the knees, still walking with a four wheel walker. The time for a wheel chair is coming possibly this year sometime. I get so wobbled in the head when my eyes move a lot with feet movement. I now have someone clean my home and I keep up with picking things up/folding clothes/cooking slowly/bills I do (has to be quiet)/riding to the store in my scooter weather permitted. My sister a year ahead of me takes me places to get out and I know she is worried for not just me but herself and what lies ahead. So you see there is no pretty picture to talk of and I would be lying if I acted as if I were not afraid of what lies ahead. Truth is yes, I am so darn scared because I know no one out there will be able to help. I wouldn't expect some would understand this only if they were a victim themselves.
In all of this we go through I only hope for many that they are among people who will be there for them and show love and understanding as to what the future holds for those with Ataxia. For me now, I still believe. What I have to deal with is what it is and I will do whatever I have to do to cope. The Love in my heart that I carry for those who love me is so strong that I will do my very best to keep them from seeing me down and depressed because of this uncurable disease called Ataxia. It is what it is and I will keep myself up and cheerful as long as I am able. Feeling sorry that I have Ataxia is not on the list for feeling. Live for today and figure tomorrow out when it gets here. For now I will enjoy my loving family and be glad there is still life to live with them. God so loves me and I soooo love God back!
Hello Everyone
I was diagnosed in early 2012, shortly after an MRI revealed a rare lipoma tumor in my brain. At first I simply experienced general imbalance problems & could no longer ride a bicycle safely. One night I woke up to visit the bathroom, lost my balance, fell and broke my back. Although I recovered, the healing time was extended due to my inability to safely move about in a back brace. I suffered anxiety, depression, panic attacks, insomnia, yeah, the list goes on. By the time I was allowed to return to work, I was more or less unable to do my job. Handwriting is very difficult, and typing - even this short message with one finger is very tiring. Now I no longer can use small hand tools, things like getting an eyelash out of my eye are nearly impossible. I lost my job and ended up having to move across the country (affordable living). Thanksgiving was lonely and Christmas was worse. When I found this website I read the comments and could hardly believe there are others like me with similar frustrations.
Dear Artistic22, You're not alone in your journey! I hope you find comfort in this! Thank you for sharing your story...,;o)