Hi, I'm Kyra

[kyra76]

Hi, I'm Kyra & I have Ataxia. I'm newly diagnosed and looking for any advice, tips on how to make life easier.

[anihol]

Hi kyra what type of ataxia do you have and what are your symptoms of this? Ps welcome Anita

[john61]

I sagest you read the back posts on here you should pick up some tips but as anihol says it is impossible to give more without knowing more.

[JillJ]

Hi Kyra, tell us a little bit more about what type of ataxia etc and then I am sure you will get loads of helpful replies. You are among people who want to help you here. I was diagnosed with Idiopathic Late Onset Cerebellar Ataxia in March of this year, and was quite reluctant to join a group as I didn't want it to be all doom and gloom about the future. However, I really haven't found that. This group is full of people who just want to encourage and help wherever they can. I am very much at the start of this journey and have questions about all aspects of living, but you can rest assured that if you put a question to this group, then someone will have gone through the same or a similar problem, or they will know in which direction to point you. I would encourage you to post a little bit more about yourself, so that you can enjoy a wealth of experience in your inbox!

[kyra76 in reply to JillJ]

I was diagnosed officially with Late Onset Idiopathic Cerebellar Ataxia in January, although I've suffered with symptoms for almost 3 years. Walking into doors, walls, people, furniture..as well as losing my balance and having numerous falls, i have awful tremors in my legs & spasms, i also have Fibromyalgia as well which is a pain on it's own, no pun intended! I have just recently been dismissed from work due to Ataxia and had to claim benefits :,-( this is causing no end of problems at home...I don't go out very much anymore and it affecting my driving which at the moment my car is my legs, suppose I'm just feeling down and depressed with all this going on as I've always been very active and out going....x

[wobblybee]

Hi Kyra, welcome😊

After you've browsed the site, read profiles and followed discussions, you'll realise that although we all share basic symptoms, not everyone is challenged in exactly the same way, or to the same degree.

Play it by ear for now, go with the flow of your own body until you feel and know what troubles you most.

The main thing to keep in mind is stay safe. Concentration, and multitasking may be affected. This prevents doing automatic everyday tasks, and movements, safely. You may find perception of depth and spatial awareness is not as reliable, kerbs are a hazard. Bright lights, noise, busy areas all combine to cause disorientation. Patterned flooring can affect a lot of people. Going out at night often presents difficulties, being plunged into poor light or darkness causes disorientation, and often lack of control over movement.

Don't try to overthink all this, as I've said, not everyone experiences all the symptoms.

😊xBeryl

[Alex100]

i think you should first contact ataxia uk charity, they have local support groups accross the uk. I was diagnosed in 2012 and wish i knew about that charity then.

[february]

A HUGE welcome to this site, Kyra76! I also have Late On-Set Idiopathic Cerebellar Ataxia, although mine has been labeled Sporadic Cerebellar Ataxia (unknown cause at this time, which would be the idiopathic part, symptoms 24/7, progressive). Currently, I'm waiting for results of recessive genetic "exome" testing, to see if anything shows up. Anyway, I was diagnosed with ataxia twelve years ago, but had very minor symptoms starting about eight years before diagnosis. I started using a cane (stick) about six years ago to help prevent falls, which I have occasionally when I don't use it, like inside my house. My advice is to exercise for strength and balance (you can Google exercises for strength and balance) and eat as healthy as possible! Stay as active as you possibly can, as I walk with my Access Active Rollator outdoors. Have as positive an attitude as you can, concentrating on what you can still do, not what you can't. It's not easy, just do the best you can! You are not alone in your journey! My best to you..., ;o)

[scruffycat]

I'm afraid Kyra, ataxia is one of those deseases that aren't normally black and white. People may be affected by a greater or lesser extent, by certain things, depending on how their brain has managed to cope with the activity. That's a complicated way of saying, you have to pick what works for you.