Hi! Hope I can help you ...: Hello! My name is... - Ataxia UK

Ataxia UK

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Hi! Hope I can help you ...

estebangrieb profile image
11 Replies

Hello!

My name is Esteban Grieb, I’m 39 years old, I was born in Buenos Aires, Argentina and I now live in Steyr, Austria. I was diagnosed Friedrich’s Ataxia in 1999 and I have been using a wheelchair for nearly 14 years.

Here, I’d like to tell you a short story about my life so far:

Sports, being active and generally keeping fit has always had a big importance in my life. My mother and father were both also very active and both also handicapped (infantil paralysis and polio). My Dad was a Paralympic Champion, World Champion and one of the best wheelchair sportsmen of his day. They were always great role-models for me because they showed that it is possible to live a normal life with a disability.

In my life I have played football, basketball, tennis, badminton, table tennis and many more. Just like the other kids my age, I loved doing sports. When I was about 17 I noticed that some of my movements were difficult, and not as good as they had been previously.

I felt tired a lot faster, my legs hurt and my body wasn’t as resilient as it had been, I could feel that my sporting performance was getting worse. Some of my friends noticed my movements, for example when I played Basketball, and laughed at me because they thought it was funny to see me when I played.

Later, after some medical examinations I recieved my diagnosis. My initial thoughts were, what’s that? Is it curable? Is it a infection that I can treat with medication? I had no idea about ataxia, and I think many people share these feelings and questions when they are first diagnosed!

At first I experienced many problems with my new diagnosis and the progression of my condition. I had some ups but many downs. I didn’t realize what my ataxia meant for me and I was very far away from accepting it.

After some years I started doing sports again. I had to adapt my training because by that time, I was already using a wheelchair. It was for this reason I choose to go to the gym and for the first time in my life I started to have regular private lessons with a physiotherapist. I started to recognize again that movement is so important to my life - life is movement. I was feeling motivated again and started to feel better and better all the time. Two or three 
times a week I trained and exercise for between half and hour and an hour. It’s very important to remember not to over exert yourself - listen to your body and take lots of rests and time to recover. Everybody is different!

For many years I visited the local gym where I live but as everybody knows with FA my stamina, strength and coordination was decreasing with time. This year I stopped going to the gym regularly but I didn’t stop exercising and regurlarly meeting with my physiotherapist. However, I have found a new way to to strengthen my body and i’m really happy with that what I can do by myself !

Last year I was introduced to smovey. It is a small exercise and health unit consisting of a swinging-ring system, a spiraled tube, four steels balls, and a grip with cushioning elements. The inventor is a man from my region here in Austria, who was diagnosed with the Parkinsons disease, so I thought I’d give it a try - and I grew to recognise that it could help me too. I started doing some exercises with smovey and after a short time I noticed that this tool was having a very positive impact, for example the fine motor skills in my hands improved. The other positive thing that now I also have my small gym at home! Because you don’t have to go outside your home or don’t need much space when you train using the smovey. I’m gently doing my exercises in my own way about 5 times a week for 10 to 20 minutes and it helps me a lot. I’m feeling better every time I use the smovey and it’s great to keep fit and healthy! The amazing thing is also that even with just a little bit of time and effort, you can achieve good results with the smovey.

I wanted to tell you my story because many people with FA and other neurological disease should know that there is something that can help you and support your condition. My goal is to inform as many people as I can!

If you have any question about me and the world class smovey, don’t hesitate, and contact me!

My mail-adress is: stefan.grieb@liwest.at

Here you have some information about smovey:


HISTORY: smovey.com/en/company/history/

FUNCTION: smovey.com/en/company/funct...

Hope to here from you!
I wish you Merry Christmas and a Happy 2016.

Greetings from Austria

Esteban

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estebangrieb profile image
estebangrieb
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11 Replies
tino1234 profile image
tino1234

really enjoyed reading your story and well done to you for trying to improve a really bad condition top marks

estebangrieb profile image
estebangrieb in reply to tino1234

Hello :D I was very happy that a gave smovey a try ... it was cool to recognize that it supports my condition ... greetings

wobblybee profile image
wobblybee

Hi😊

It's interesting😊 Anything that motivates an Ataxian to exercise is worth looking at😊

I watched the inventor's outdoor video and thought I wouldn't mind giving this a go. Then I watched the 'fitness instructor' which was indoors. It was only then that I noticed a repetitive 'sawing' sound. This must be caused by the balls.

Unfortunately I have a problem with repetitive noise/tone, others might find the ball motion soothing to listen to or not even notice it at all 😊xBeryl

estebangrieb profile image
estebangrieb in reply to wobblybee

Hi :) Nice to hear from you ...

Yes, smovey has a unique sound. This occurr, like you said, when the balls move inside the ribbed tube.

I can tell you that in my case I don't recognize that anymore after one year ...

greetings :D

Esteban

february profile image
february

Dear Esteban, Your story is very inspirational! I've yet to watch the videos, but plan to. Thanks for sharing! My best to you...,;o)

estebangrieb profile image
estebangrieb in reply to february

thank you very much :)

neta profile image
neta

I visited the site. But its not clear to me how to get this product or if this is necessary. I do not live in Austria!! I am happy it helped you to some degree. Unrelated, once again,LWA seems to have vanished.....

estebangrieb profile image
estebangrieb in reply to neta

Hi! If you are interested to get a smovey, please let me know and write me an e-mail with your complete adress to stefan.grieb@liwest.at - I'll try to get it for you ...

necessary? what do you mean by that?

what is LWA? sorry but my english isn't very good ...

greetings :)

neta profile image
neta in reply to estebangrieb

What I mean is can this product be imitated or copied? LWA is Living With Ataxia. This is an American group which has nothing to do with Smovey. Your English if fine..

neta profile image
neta

XXXXXX

estebangrieb profile image
estebangrieb

I don't know something you can compare with ... a small, ripped tube with steel-balls ...

I never experienced something like smovey :)

the good feeling is because of the vibrations ... that's all I can tell you ... I always say that the best thing is to try it yourself ...

greets

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