Sometimes it's hard to find Success Stories, Positive Discussions or groups that are uplifting on the site. We want to make it easier for you to find them....
So if you leave a link to a positive Success Story or a Blog Discussion post on the site in the comments below, we’ll move it into the main body of this post for easy access for everyone!
Success Stories:
1. Schumant's Inspiring Blog Post
Just a positive thought.
You can’t change the direction of the wind but you can adjust your sails.
When I was diagnosed this spring the first thought is 'oh crap’
But after I started to think about it I realized how lucky I have been my whole life
Time to quit coasting and enjoy life
I have a bit of a success story to share. I was diagnosed with ataxia 10 years ago, although I had small signs starting about 8 years before diagnosis. After I won a BalanceWear vest at the silent auction at the National Ataxia Foundation (NAF) conference in March, 2013, I was excited so to receive it! I had to wait for mine to come in the mail from the physical therapist, Cindy Gibson-Horn, who invented it. It was coming from California, made for me, in my specifications, as I had an assessment with the inventor after winning (she was also one of the speakers at the conference). Anyway, it finally came, with weights that would be velcroed inside in various places for my needs. I had to see a local pt, trained in BalanceWear, for the weights placement (per Cindy's instructions), and the final adjustments before I could wear it. So my husband and I went to see this pt. When we arrived home, I was finally able to wear the vest. I walked down my driveway and through the neighborhood and even jogged a little ways (holding my husbands hand). I hadn't been able to jog in years and felt so "free"! Truly a wonderful feeling! ;o)
Self hypnosis has been my success story .. dont know how I coped before I found Andrew Johnson on Facebook. I started with free downloads and now pay just £2 for new downloads.
https://www.facebook.com/relax.with.andrew.johnson
Also found that could consult Dr de Silva locally instead of the long trek to Ataxia Centre in London. Brilliant.
http://www.bhrhospitals.nhs.uk/for-health-professionals/consultants/de-silva.htm
Both my daughter (40) and I (64) have vests. She finds that it gives her more stamina. Like you, she still ambulates independently. I have to use a walker, so the benefits aren't as profound. Still, it is comforting and enhances my limited balance.
I have also been fitted with a BalanceWear vest by Cindy and it has really helped. Because I live in UK I had to go and see her in San Francisco and within minutes of having the vest fitted I was talking, writing and walking better. I am not sure how it works on the speech and writing but it does and is also helping with the walking. I still need a stick but it is early days and have exercises to do…
rose said:
I have a bit of a success story to share. I was diagnosed with ataxia 10 years ago, although I had small signs starting about 8 years before diagnosis. After I won a BalanceWear vest at the silent auction at the National Ataxia Foundation (NAF) conference in March, 2013, I was excited so to receive it! I had to wait for mine to come in the mail from the physical therapist, Cindy Gibson-Horn, who invented it. It was coming from California, made for me, in my specifications, as I had an assessment with the inventor after winning (she was also one of the speakers at the conference). Anyway, it finally came, with weights that would be velcroed inside in various places for my needs. I had to see a local pt, trained in BalanceWear, for the weights placement (per Cindy’s instructions), and the final adjustments before I could wear it. So my husband and I went to see this pt. When we arrived home, I was finally able to wear the vest. I walked down my driveway and through the neighborhood and even jogged a little ways (holding my husbands hand). I hadn’t been able to jog in years and felt so “free”! Truly a wonderful feeling! ;o)
Glad your vests are helpful Schumant and Wobblymum! I also have an improvement in my writing/printing when wearing my vest. Amazing!!! I use a cane when I leave my home to prevent falling, as I'm trying to re-build my confidence (I've taken some pretty nasty falls)! I'm trying to strengthen my leg, arm and core muscles, and hope this will help also! Thanks for the interesting links Patsy! ;o)
My success story is. I knew something was wrong with me 2007, I went on the NAF website to look for information on ataxia because I do my father had something like that. Through the information on the website I knew I had ataxia and in the summer of 2007 genetic testing showed I had SCA-2, I was not shocked. My younger sister was also diagnosed with ataxia at that time also. She never lived long enough to get genetic test. She died Halloween 2008.
When I was diagnosed I went out and purchased a recumbent trike. I increased my workout efforts to include jogging, yes jogging. For the second time in August I participated in the Falmouth Massachusetts road race, which is 7.1 miles. I did this to raise money and awareness for ataxia research. Back to my workout routine, on a rotational basis I either ride for 10 miles or jog for 3miles I also do a 30 min. cardio workout or the same time I work out with weights. Most days I use and X box 360 game for 30 min. and I regularly to balance and stretching exercises.
I volunteer daily for about an hour or so at our local Council on aging, I am also active in the local Boy Scout troop.
My sister on the other hand, instead of trying to help yourself , went out and purchased a scooter. Smoke, drank, did drugs
I can definitely say that all this activity has definitely slowed my progression. I have adapted so I can accomplish just about anything I want to do.
Please don't give up on yourself, fine things and ways to stay active and useful.
My local neurologist one time called me " The Poster Boy " of how you should tackle a neurological disorder, also a couple of years ago he said since I am doing so well he felt I no longer need to see him.
Stay Strong
Jack said:
My success story is. I knew something was wrong with me 2007, I went on the NAF website to look for information on ataxia because I do my father had something like that. Through the information on the website I knew I had ataxia and in the summer of 2007 genetic testing showed I had SCA-2, I was not shocked. My younger sister was also diagnosed with ataxia at that time also. She never lived long enough to get genetic test. She died Halloween 2008.
When I was diagnosed I went out and purchased a recumbent trike. I increased my workout efforts to include jogging, yes jogging. For the second time in August I participated in the Falmouth Massachusetts road race, which is 7.1 miles. I did this to raise money and awareness for ataxia research. Back to my workout routine, on a rotational basis I either ride for 10 miles or jog for 3miles I also do a 30 min. cardio workout or the same time I work out with weights. Most days I use and X box 360 game for 30 min. and I regularly to balance and stretching exercises.
I volunteer daily for about an hour or so at our local Council on aging, I am also active in the local Boy Scout troop.
My sister on the other hand, instead of trying to help yourself , went out and purchased a scooter. Smoke, drank, did drugs
I can definitely say that all this activity has definitely slowed my progression. I have adapted so I can accomplish just about anything I want to do.
Please don't give up on yourself, find things and ways to stay active and useful.
My local neurologist one time called me " The Poster Boy " of how you should tackle a neurological disorder, also a couple of years ago he said since I am doing so well he felt I no longer need to see him.
Stay Strong
GREAT success story, Jack! Kudos to you! ;o)
Very inspirational! Our 11 year old daughter was diagnosed four years ago with progressive cerebellar ataxia with no know cause. I am glad to have found this site and hope the very best for you!!
Jack said:
My success story is. I knew something was wrong with me 2007, I went on the NAF website to look for information on ataxia because I do my father had something like that. Through the information on the website I knew I had ataxia and in the summer of 2007 genetic testing showed I had SCA-2, I was not shocked. My younger sister was also diagnosed with ataxia at that time also. She never lived long enough to get genetic test. She died Halloween 2008.
When I was diagnosed I went out and purchased a recumbent trike. I increased my workout efforts to include jogging, yes jogging. For the second time in August I participated in the Falmouth Massachusetts road race, which is 7.1 miles. I did this to raise money and awareness for ataxia research. Back to my workout routine, on a rotational basis I either ride for 10 miles or jog for 3miles I also do a 30 min. cardio workout or the same time I work out with weights. Most days I use and X box 360 game for 30 min. and I regularly to balance and stretching exercises.
I volunteer daily for about an hour or so at our local Council on aging, I am also active in the local Boy Scout troop.
My sister on the other hand, instead of trying to help yourself , went out and purchased a scooter. Smoke, drank, did drugs
I can definitely say that all this activity has definitely slowed my progression. I have adapted so I can accomplish just about anything I want to do.
Please don't give up on yourself, fine things and ways to stay active and useful.
My local neurologist one time called me " The Poster Boy " of how you should tackle a neurological disorder, also a couple of years ago he said since I am doing so well he felt I no longer need to see him.
Stay Strong
Dear Jennifer, A HUGE welcome to this site! The people on here are quite wonderful for understanding and support! ;o)
I have had ataxia all my life. I had other diseases, and the list seemed to get longer the older I got. I had gone to other chiropractors for years, and some relief, but not enough. Then a friend told me about her chiropractor, Dr. Slava Borisenko. I went to see him; best decision I ever made. He has helped my ataxia immensely. My speech has cleared, balance has improved, the spastic movements are gone, etc. He has offices in Seattle and Everett. If you have ataxia, back and neck problems, and live in the Seattle or Everett areas, please go see him. It will be worthwhile.
YEAH....I was wondering if it would work. I saw demo on website and it makes sense to me. If I can get some insurance maybe I can get one. I really want to try it.
rose said:
I have a bit of a success story to share. I was diagnosed with ataxia 10 years ago, although I had small signs starting about 8 years before diagnosis. After I won a BalanceWear vest at the silent auction at the National Ataxia Foundation (NAF) conference in March, 2013, I was excited so to receive it! I had to wait for mine to come in the mail from the physical therapist, Cindy Gibson-Horn, who invented it. It was coming from California, made for me, in my specifications, as I had an assessment with the inventor after winning (she was also one of the speakers at the conference). Anyway, it finally came, with weights that would be velcroed inside in various places for my needs. I had to see a local pt, trained in BalanceWear, for the weights placement (per Cindy's instructions), and the final adjustments before I could wear it. So my husband and I went to see this pt. When we arrived home, I was finally able to wear the vest. I walked down my driveway and through the neighborhood and even jogged a little ways (holding my husbands hand). I hadn't been able to jog in years and felt so "free"! Truly a wonderful feeling! ;o)
I picked up my balance vest on Friday of last week have worn it through the weekend. I have noticed changes in my balance and stability and more importantly my wife who is a physical therapist has noticed I am better wearing the vest. I am going to wear the vest for one week while doing all my daily activities and then I won't wear the following to see if I notice changes.
PG said:
YEAH....I was wondering if it would work. I saw demo on website and it makes sense to me. If I can get some insurance maybe I can get one. I really want to try it.
rose said:I have a bit of a success story to share. I was diagnosed with ataxia 10 years ago, although I had small signs starting about 8 years before diagnosis. After I won a BalanceWear vest at the silent auction at the National Ataxia Foundation (NAF) conference in March, 2013, I was excited so to receive it! I had to wait for mine to come in the mail from the physical therapist, Cindy Gibson-Horn, who invented it. It was coming from California, made for me, in my specifications, as I had an assessment with the inventor after winning (she was also one of the speakers at the conference). Anyway, it finally came, with weights that would be velcroed inside in various places for my needs. I had to see a local pt, trained in BalanceWear, for the weights placement (per Cindy's instructions), and the final adjustments before I could wear it. So my husband and I went to see this pt. When we arrived home, I was finally able to wear the vest. I walked down my driveway and through the neighborhood and even jogged a little ways (holding my husbands hand). I hadn't been able to jog in years and felt so "free"! Truly a wonderful feeling! ;o)
That's wonderful, Jack! I have a balance vest also, which helps me..., ;o)
Local chef and owner of Simply Delicious Catering, John Mauro, was recently chosen as a finalist for the popular cable show, Next Food Network Star.
Mauro was nominated by colleagues, unbeknownst to him. “There was a casting call in Rhode Island” says Mauro. “Denise [Kapulka] basically picked me up and said ‘Here’s what you’re doing today’!”
Mauro described the initial interview as “a lot of questions about anything except food”, which he apparently aced, as he was chosen to move on to the telephone interview portion of the selection process. “The producers based on New York called, I had a phone interview with them, the next thing I know I was invited to New York City” says Mauro.
The purpose of the NYC trip was to run through “mock shows” where the contestants simulate actual filming conditions. Unfortunately for Mauro, who lives with Ataxia, a degenerative neurological condition, the television set proved to be challenging. “The sets were hard to navigate” says Mauro. “There were wires on the floor, things changed all the time, I couldn’t foresee what would be where and I couldn’t just move things.”
One of the Food Network sets.
Ultimately, Mauro contacted Food Network producers and gratefully bowed out of Next Food Network Star, but countered with his own idea. “I proposed to producers a cooking show featuring chefs with disabilities” says Mauro. “I suggested they could focus on large format displays.” By way of example, Mauro points out the enormous gingerbread Christmas tree he and his crew built. “It was huge, it lit up, played music and it was all made of edible material.”
Mauro’s idea is that the show could work with corporate sponsors and have the chefs build these large format displays to coincide with events with which the Food Network or show sponsors are involved. “They [displays] could be for trade shows, sporting events, large national events like that” Mauro adds.
The show would also add diversity to the network’s programming. “There isn’t really anything else like it on any cable network” says Mauro. “This would also be a great way to bring more awareness to the National Ataxia Foundation” he adds.
Mauro leading the Ride for John on his adaptive bicycle.
Mauro has been deeply involved with the Ataxia Awareness since being diagnosed with the disorder in 2007. Instead of sitting by waiting for the disorder to progress, Mauro became an advocate. He started the ‘Ride For John – Walk and Roll for Ataxia’ fundraiser in 2007. Mauro was recently nominated to sit on the National Ataxia Foundation board of directors, and expects to be officially appointed at the NAF Annual Conference in Las Vegas in late March.
Currently, Mauro’s television concept has passed the producers’ initial muster, and has moved to phase two. “They [the producers] are figuring out the show formatting and trying to line up sponsors” says Mauro. Any money Mauro earns from the show, should it become a reality, he plans to donate 50% back to the National Ataxia Foundation.
On the topic of a “missed opportunity” with Next Food Network Star and the prospect of becoming a celebrity chef with this new concept, Mauro states, “This is really about driving awareness and fundraising for research. That’s the most important thing to me right now.”