Hello to hope. Thank you for this forum - Ataxia UK

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Hello to hope. Thank you for this forum

Rezzy3 profile image
15 Replies

This forum kept we awake way past a reasonable bedtime as I could not stop reading all the posts and replies. As a new member and newly diagnosed ataxia statistic, I guess I’m not alone.

I must be getting out of the angry frustrated stage and moving on to the “do something about it” stage. Anyway, my apologies for the rambling intro. Just wanted to say thank you for giving hope! Glad I found this group.

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Rezzy3 profile image
Rezzy3
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15 Replies
HarryB profile image
HarryBAdministrator

Dear Rezzy3

Thank you for your kind words. I am so pleased you find this forum helpful. Ataxia UK always likes to hear any feedback but when it is so positive, it is marvellous! Having said this it is the forum members who really make this forum so constructive and supportive. Thank you to you all!

Best wishes

Harriet

Rezzy3 profile image
Rezzy3 in reply to HarryB

In this day and age and with all of us dealing with this condition, I find it better to acknowledge the good than to highlight the bad. Thank you for being so welcoming!

lottiejemma profile image
lottiejemma in reply to HarryB

Hello harryB, I want to join with all to say THANKS BE TO GOD for this amazing encouraging uplifting site, oh I feel I have a big Family support, this site is making me feel an accepting of my condition, and one with all, and all are for one, At last, I can cope, because I read so much of others coping, and I am not alone HUGS everybody, if this is "a good day " then Enjoy, -- if it is not --- stay safe, wait a little longer, the good day will come. This is not a good day for me !! not yet, but as long as I can be on this site, I will be fine and cope love to everybody----- Lottie

HarryB profile image
HarryBAdministrator in reply to lottiejemma

Hi lottiejemma

I am so pleased you find this forum helpful as well. Always be positive. Your day WILL get better.

Harriet

sunvox profile image
sunvox

Dear Rezzy3,

Welcome to Health Unlocked. As Harriet said, it's great to hear you find it helpful. What few words you have written strike me as quite thoughtful so forgive me if my little advice is obvious, but I find not everyone knows the "tricks" to this site.

Here's my first bit of advice: Be sure to use the search function when you have a question.

People have been posting here on virtually every issue you can imagine for a very long time, and many topics that you will likely want answers to have already been discussed several times. You'd be surprised what you can find in 5 year old comments.

And, my final advice: When someone writes something that's interesting to you try clicking on their screen name to see what other posts they have made that may be of interest to you.

That's it :D

Welcome to HU!

Joe in NY

P.S. One quick question. Does anyone in your family have ataxia or are you the only one?

Rezzy3 profile image
Rezzy3 in reply to sunvox

My parents are from overseas so they never went to the doctor.

I’ve already had two gene panels done and all are negative for mutations. So far I’m the only one but I observe my 82 year old father and I’ve seen all the same symptoms. But he ballroom dances 2-3 times a week with my 91 year old mother.

PS. Your write up was the first I ever read and it really pulled me in. You have such technical breakdown that I keep a second iPad close by to reference the terminology I don’t know.

If I don’t put a timer, I could chat with you for endless hours. Any tricks to efficiently navigate this forum are always welcome.

ddmagee1 profile image
ddmagee1

Hope is what we all need! This forum has meant hope is alive, for me! Welcome, and you will find answers to questions here, and, importantly, support from fellow "Ataxians", that understand, really understand, what you are going through, because they have traversed the roads, of living with Ataxia!

Rezzy3 profile image
Rezzy3 in reply to ddmagee1

Hello ddmagee1, All the replies I’ve gotten just put an even brighter light on my outlook.

Thank you for the morale boost. Crazy how much a short reply can affect an “Ataxian”.

Btw, I’m stealing your word. 😊

ddmagee1 profile image
ddmagee1 in reply to Rezzy3

Thanks Rezzy3!

february profile image
february

Dear Rezzy3, A HUGE welcome to this site! You'll find many wonderful people for advice and support! My best to you..., ;o)

Rezzy3 profile image
Rezzy3

Thanks february, Ataxia UK has already made me feel like I found the cure. I don’t think I’ve ever messaged,dm, or even commented on any social media before. At this point I haven’t stopped to close my HU app in three days!

Best wishes.

coat2003 profile image
coat2003

Rezzy3, I wasthere in Nov. 2007. once mist descends, get physio, any flat improvements like a grab rail...occupational therapy...Ihave hereditary sca2. my bro living in a different country (home) I am almost in my 2nd hhome, but a language difference, although Latin shld sort that out...I am 70% still using my legs, but adaptation made...he is 30% and it proves to be trickier, mine is flatly degeneration of cerebellum, flatly undisputed...he has a high dose of anticlotting meds, and some changes on the lesions...

coat2003 profile image
coat2003

navigating a site, if by any chance you end up on Quitt smkoing one early morning, always put into healthxxxxsearch ataxia...I got quite a lot of friends there as well..despite NEVER SMOKED..we all are trying to get as best advice, as possible...whatever an issue..STAY POSITIVE...that's the main thing....I won't be joining Blackpool tower for ballroom dancing any time soon for dancing, glad can walk:)

Rezzy3 profile image
Rezzy3 in reply to coat2003

Thanks for sharing coat2003.

Funny you mentioned Blackpool as my parents took a special overseas trip for their 50th anniversary 10 years ago just to dance there.

They still dance twice a week and my mother is 91. No cane no walker. Father is 82.

I’m still trying to keep up.

coat2003 profile image
coat2003 in reply to Rezzy3

fantastic, both of them. I am 42 and use my walker, my extended balancing tool.must have been born with ataxia, as when dancing, constantly imbalanced on the left, my dancing partner said...he used to be a very good dancer, somebody to twist me: and catch:)

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