Sca 2 patient need friends

[vinupr]

I am a sca2 patient. here I am searching for a good friend to discuss our worries and thoughts..kindly please message me you are interested in friendship with me, Thanks

[TELEEN]

Hi Vinpur..i have SCA2 as well,iam probably older than you,i was diagnosed when i was 50,my brother has it as well, we both inherited it from our mother.....i have just turned 70 and my Ataxia has developed slowly over the years,i have been lucky..my speech is fine and i manage to walk with a cane (stick)..My brother is 6yrs older than me,he developed SCA2 first,he can no longer walk and is in a care home,when i look at him, i see my future.Iwould like to be your friend, we could compare our condition with each other...Take care...

[vinupr in reply to TELEEN]

Hi Teleen,

In my case I have sca2, and my father had the same. it is a genetic disorder, my grandmother suffering ataxia and I know all the details about ataxia. My father speech is affected and he has some swallowing problem now, His age now is 61, I am at 34 years now. I felt some problems in the age of 30years, I am a graphic designer artist and I am work from home now, I can drive the car and little problem in driving a two-wheeler.

But my father is now in a wheelchair, I have a very small family. Dad, mom and me only, i am a single child..that's all now..Thanks

[mimosaholland]

Hello Vinupr, my actual name is Mandy, i was recently diagnosed, at this moment in time , i do not know what type i have. i have a moderate hearing loss, due to nerve damage, urinary incontience and nerve damage in my feet , hands and legs, i also walk with a wide gait, i also am noticing other symptoms. It would be very nice to communicate with you. I work full time at the moment. Have a nice day, the sun is shining here, always a blessing

[vinupr in reply to mimosaholland]

dear friend, Mandy it's a genetic disorder and no medicine for this, but in future i wish to have treatment for these ataxia, i have some balance and shivering problem and my speech is not normal, My father had same problem, now he is 62 years, I am 34 now...

[Mariweena in reply to vinupr]

Hi Vinpur...you’re the first person I’ve ever seen mention shivers! I get them when it’s not even cold and they are sooo bad that one time I lost control of my bladder 😔. Good to know it’s not just me but not glad you have them too, they’re awful!

Marina

[benning]

We are all a big Family here,you can talk to me.

[vinupr in reply to benning]

Thanks, dear friend. I think this ataxia always felt alone and very difficult to speach each other. I am from India, In India, I think very difficult to live with ataxia. Thanks

[benning in reply to vinupr]

I know India is a very backward country(like uk was 100 years ago) and be careful,there's alway's someone waiting to take advantage of you or the situation.

Any questions you have about Ataxia I would be happy to answer especially as I have learnt to cope with it over the past 25 years.

B cool...bye

[vinupr in reply to benning]

I do not agree with you, India is heavy in population. that I said, India is growing well. what your opinion about stem cell therapy. its effective for ataxia people

[benning in reply to vinupr]

Where about in India are you?

Stem Cell therapy is good and may have positive impact on the Ataxia but then again might have no or very little benefit.(NOTHING IS PROVEN)

Are you willing to pay LOADS OF MONEY to find out NOT ME.IFI could afford it I probably would have it done??

[vinupr in reply to benning]

I am from Kerala, GODS OWN COUNTRY. you said right friend, here I asked my doctor, he said the same opinion about stem cell therapy. nothing is proven yet. so don't waste your money. many other foreigners coming to Kerala to visit my country, your always welcome to kerala

[benning in reply to vinupr]

My parent's are from India,I have a holiday home in Punjab.

The road's are very rough and pollution is bad but the people are friendly.

[vinupr in reply to benning]

okay...happy to know that...you heard about kerala state

[benning in reply to vinupr]

yES

[vinupr in reply to benning]

what you heard from kerala....iamwaiting for your replay..Thanks

[Driven1 in reply to vinupr]

Stem cell therapy is a money ripoff. Check other posts

[TELEEN]

Hi..now you have some friends to speak with here and that's a good thing...We are all friendly here and we will always be supportive...Take care...

[vinupr in reply to TELEEN]

Yes, you are right..that's very cool, advance Xmas and new year wishes...enjoy your day

[auntiesally]

I was informed that I have sca2 at xmas, I cried, thinking of our sons and grandchildren as it is hereditry, am angry, sad and get very annoyed with myself at things I can no longer do, its a hard thing to explain to people when they ask what is wrong with me? I am sick of hearing people say, oh I have got that or I,m the same, when clearly they are not, feel like telling them to f... ...f. Rant over x