You matter

Hi everyone, I just wanted to share what I am feeling right now. I have been a member here for a while now. The things that are posted/shared here are beneficial & you do not always get feedback about what you posted from everyone, but believe me, it matters. You would be surprised at who may be going through the same things as you right now, I know I have read many posts only to think "that has happened to me. "
I have made a few good friends here & have read some very helpful things. Keep sharing because you never know who it may help.
Thanks and have a great day.

So true Bob. Even though we're in what is probably now the holiday season,

so for one reason or another there isn't much activity on the site, it's still

important to log on to give support if needed.

Thank you Bob!

Thanks Bob,

Blabbing, sharing, and blogging has helped me ways I didn't anticipate.


This is so true! I check this website every practice day! sometimes I comment, but most of the time I just check in to confirm that I’m not alone! We are prisoners in our own body but it’s all about attitude! I live one day at a time and just accept new symptoms with stride! everybody stay strong!

Aw.. Bob in St Louis, this is Patsy in Colchester. I love your gesture .. so true bless you. x

hey Bob I totally agree with you thank you for saying that it helps so much to know other people are going through something the same as you. I have been a member for about 2 months and enjoy all the support both what I can give and reading what others are going through.

Yes I also love to read everything. I learn so much from it.

You are so right Bob! The information shared on this site has certainly been invaluable to me! One positive thing is we are not alone in our "ataxia" journey! Everyone can have understanding and support! Thanks for the reminder! ;o)

Hello Bob, thank you. There are times when nobody answers to my post, but what you said has made me feel a lot better. Today my 43 yr old son told me that he notices as he grows older he seems to lose his balance more. He also drops things more often .His back is playing up more. He has seen me going to the Neuro numerous times with no help from them. He is reluctant to see any Neuros but I have told him to go to another one. I don't know if he has Ataxia or C.I.D.P. Which I have the both. I really hope and pray he has neither. Thank you for listening.

Hi Bron, Yes, I hope your son doesn't have ataxia or C.I.D.P., although if he does, he will handle it as you do. I have grown children (and grandchildren) also. I've been told my ataxia is non-hereditary, although that information is given for what is known, which isn't much. Because we love our children, we hope we don't pass anything on to them. If we do, all we can only hope for is that they will handle it positively, and/or that there will be a cure in the future! Ataxia is challenging and frustrating, although I find it best to embrace what I can still do, rather than what I can't! My best to you..., ;o)

My "Thanks, Mom" post 5/2012

Mother's Day started me thinking about how this began (to my knowledge). I have Spinocerebellar Ataxia, Type 6 (SCA-6). There are many types that vary in onset, cognitive involvement, and other things that are of no interest to most people. I now know that I got the autosomal dominant gene from my mother, who unwittingly passed it along to me. Looking back, I recognize the ataxic signs began in her mid 60's--the gait, the speech, etc. After my initial diagnosis in 1997, I was angry with her for doing this to me (I didn't care that she never knew). "Come on, Ada." I thought I had just inherited her boobs, skinny legs, and smart mouth.

But she wasn't much of an information-seeker, and consequently, didn't realize she had Ataxia. Ada just thought... (actually, I have no idea what she thought). Although she and I were close, Mom went to great lengths to deny her Ataxia. She knew something was wrong, but backed away from putting clues together. Her family decided that her behavior was because she had never taken care of her health, drank too much, watched too much TV, stayed on her chaise lounge 24-7, and wanted to be catered to. My usually "snappy" mother took all of our judgements in silence. That should have tipped me off to a problem right there. As her only child, one of my saddest thoughts is that she was alone in this. Mom's self image was just too important to her and that trumped everything else. She said nothing, we said nothing. Ada died of pancreatic cancer before she progressed neurologically (she would have considered that the good news).

Children are a recurring theme and a big issue in Ataxia circles, since descendants have a 50–50 chance of carrying the gene. I think Mom became symptomatic in her 60s, me in my late 40s. The other shoe dropped when Heidi became symptomatic with her second pregnancy in her early 30s. Earlier onset with each generation is officially called anticipation. Our son, at 37, is asymptomatic. Our children and their spouses had their own families after my diagnosis, knowing the risk. My biological children, in-law children, and four grandchildren are supportive, aware that I may represent what they have to face in some way. Granted, I'm not the grandmother I want to be, but I can still hold the grandchildren on my lap, play on the floor, read books (sort of), give rides on Skeeter, my trike, the grocery cart, etc.

It's not rational to feel guilty (besides that, guilt is my least favorite emotion), but our children are so bright and beautiful, that I wanted anything that came from me to be perfect. It didn't happen that way. We all pass on characteristics to future generations through our genes. But, most of the time, it's blue eyes, a certain body type, or a predisposition for heart disease, etc. This felt more like a life sentence from a lottery.

So, do you test descendants for a disorder that has no cure, no treatment, and a 50% occurrence rate? The short answer is probably not, unless you want the information for planning or you just want to know. Most genetic researchers advise against testing asymptomatic children. First of all, minors are too young to give informed consent. Secondly, genetic testing is extremely expensive (a full genetic panel could exceed $5000.00) and is rarely covered by insurance. Most importantly, children are better served by being encouraged to follow their physical interests and live their lives. If the Ataxia should manifest at some point, and they seek out information (family, physicians, support groups, websites), they'll figure out the particulars on their own.

The lesson: Nothing to be gained by anticipation (pardon the pun).

Hello Shumant, I had genetic testing for the known recessive types of ataxia, which was negative. My current neurologist would like me to have genetic testing for the known dominant types of ataxia. My insurance covered my genetic testing the first time, and my doctor is checking to see if my insurance would cover the second round of genetic testing. Granted, there's no cure for ataxia, but if genetic testing could help research and/or someone in the future, I'm all about that! The jury's still out about whether or not I would tell my children if I tested positive this time. My first husband died of a rare form of cancer when our children were 12 and 14 years old. They are now 29 and 31, and one is a dad with two children (my grandchildren) of his own. My deceased husband was diagnosed of a particular health problem when our son was 3 yrs old. If we had known this problem could eventually turn into cancer, this would have put a damper on our lives (nothing could have changed this prognosis, even if we would have known early on). The point I'm trying to make is some things are better not known (especially if there's no cure). Therefore, ataxia, if hereditary, it wouldn't help to know about it, as it would cause one to worry, possibly, needlessly. What good would that be? No one knows what the future holds! We must deal with what ever comes our way the best we can! ;o)

So true Bob in St. Louis, Everyone has something to contribute or share. I for one have learned a lot. I got some good input and advice on several topics.

Thanks Bob for posting.

I've recommended LWA to several people, it's been very helpful to me. xB

Thank you for taking a moment to share such positive thoughts. I totally agree :slight_smile:

LWA has been a life-savor! Personally, it has helped me feel less alone with ataxia! Until I was diagnosed with ataxia, I had never heard of it before! this site has been great for understanding and support! ;o)