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Ataxia Support

Please advise

Good Morning, Everyone,
I guess I want to share a situation that happened on Sunday and see if it’s common in other people (is it an Ataxia thing?), how do you guys deal with it, and is there a way you all have found to prevent it.
So, on Sunday, I went to the beach with my husband, sister-in-law, and her boyfriend. Our plan was just to hang out on the beach/in the ocean for an hour or two…nothing extreme. However, we only lasted about a half hour. I couldn’t walk in a straight line. My husband essentially had to drag me back out to the parking lot; he pulled the car around to pick me up because walking the whole 100 feet to the car would just be too much :confused: I was mortified. I looked blackout drunk in the way that I was stumbling, slurring all of my words, etc.
My husband and I have a trip to Disney World planned for the end of September. He was understandably frustrated about the whole day and said he has no idea how we’re going to go to Disney together if this could happen again, especially when I experience no warning signs that this is going to happen.
Is this weird “flare” an Ataxia thing? How do you all cope with it? Are there any warning signs that it’s going to happen?

Thanks in advance!
-Anna

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GM annamary319, I think what you experienced was from the Sun. My recommendation would be go to Disney World and wear a hat so you do get any heat on your head. I find that extreme heat effects “us”. I know if affects me in a bad way. Anybody else have an idea?

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:slightly_smiling_face:Hi Anna, this sort of thing has happened to me, I also have an Episodic Ataxia but this could happen to any of us. For me, being in an unfamiliar place plays havoc with my symptoms, having to multitask and use all my senses just to function…:woozy_face: Like you I also had a nice outing to the coast, and just went completely to pot when I got out of the car and had to walk. And this was just in a flat car park, not even a beach. My gait was awful, I couldn’t walk in a straight line, and it wasn’t even a warm day :roll_eyes: This has happened so many times that I now associate it with being in an unfamiliar place, and it does tend to spoil social occasions. I’d been to Disney several times before being diagnosed with ataxia, but I was always wary of certain rides. But you’ll never know until you try Disney for yourself, it is usually crowded, and in Summer standing in line for rides can be hot and very tiring. Although it is possible to hire wheelchairs, and usually people in wheelchairs get to be first in line :wink:

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Hi Anna,
A hat sounds good. You might also consider using a wheelchair for your trip to Disney. A friend of mine did that and it was so helpful. On the other hand, if it was sudden, especially with slurring your words, you might need to see a doc to rule out stroke. jd

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Don’t despair. Sand on the beach screws up your balance and I would bet you have a bit of hyper reflexivity going on too. My husband has ataxia and the beach was an eye opener. He was all over the place and everytime he fell, I would lay down next to him and joke that if he wanted to lay down and get a suntan to just say so. Going to Disney as long as you have sidewalk should be fairly normal for you. If you’re like my husband, when he’s tired or cold he can’t move. He also can’t do uneven ground or inclines or declines. Get an electric wheelchair to save your energy for fun stuff. FYI, those with wheelchairs get to go in the fast lane for rides. Don’t stop doing things just because you look a bit odd. People go to Walmart and look odd all the time. Have fun!

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This sounds like me whenever I get triggered. I have episodic ataxia and I get triggered by cold, exercise, and visually demanding tasks (like driving or the vision therapy I do to help my eyes team better). I have a wheelchair because this happens to me so often. Strangely, it improves completely with the hydration therapy I get for POTS/small fiber neuropathy. Anyway, I say get a wheelchair and don’t let it stop you! I am using my wheelchair more and more when I go out. Sometimes I walk around and push it (it helps my balance like a walker) but when I need it I sit right down. I’ve been to Universal with my walker (my husband and children had to push me in it for part of the time) and you do go straight to the head of the lines for rides…kind of a bummer in Harry Potter land because the lines are half the fun :slight_smile:

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Extreme weather affects my ataxia too. I presume my brain can hardly cope with normal weather. So if I give it a new problem, it goes haywire.

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not surprising to anyone who knows about ataxia but very unnerving the first time… anxiety makes it worse.
I have no more to add to advice already given and agree that you should not let this experience stop you from continuing with your plans. Have fun. Patsy

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Been there done that many years ago. Have had sporadic ataxia for over 20 years. First I could not walk on the sand alone and then when I got into the water I just cried. The moving water made me very dizzy. It is difficult. At Disney get a cart or a wheelchair. Carts are the easiest but don’t go too fast. Have fun and take it one day at a time. Have never had a “flare” but we are all different.

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Hi Annamary,

I have Friederich’s Ataxia & this is something that happens to me if the ground I’m negotiating is not firm. Perhaps you could invest in a walker or rollator as it’s sometimes called. Mine has a little seat so that I can sit if the going gets me a bit tired. Stress plays havoc with my speech & my shakiness, so being embarassed about how I may look to others or how those with me react to what’s going on, doesn’t help.

I try to remember that this is something that has happened to me. It’s not something ANYONE would wish on themselves…or anyone else. :blush: People who are close to us, generally react from a place of concern for us. We need to be open about what we need & to ask for help when it’s needed. I have late onset FA, so I’m still getting to grips with not being able to do things, that just a short time ago I could do without thought.

In the end, there are options. They are to walk with an aid (stick or rollator), or to make use of a wheelchair when needed. These things (to us), may feel like we’re losing or giving up what we were. They aren’t. We’re just using a tool to continue on with life.:blush:Be kind to yourself! You’re doing the best you can. Enjoy Disneyland! :wink:

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Thank you to everyone who has responded! I really appreciate all of the empathy, compassion, and tips for maneuvering this awful condition. I have a rollator which has been immensely helpful when I’m out running errands without my husband…or a shopping cart lol. I’ll look into a floppy hat and renting a wheelchair or scooter in Disney World.
Thank you again! :slight_smile:

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HI,Yes it could be the sun or just the sea movement coming in and out which can upset balance along with the slope of the beach.With Ataxia I have good and bad days and slopes are not great and maybe beach sand also.Suggest that you look at getting a travel scooter which will help you in the crowds at Disney get a good sun hat and make sure you have sunglasses on.Take care and keep positive

Barry