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Ataxia Support

Please advise

: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

I have major problems with uneven surfaces. I have problems anyway, but it is even worse on sand. I even managed to break my husband’s toe when he was helping me in sand. I felt terrible!

:hushed: That was a fluke accident Linda…For quite a while I’ve been reasonably ok, unless I’m on sand :wink: But recently I’ve found walking on grass can send my balance haywire​:woozy_face: Just yesterday, I zigzagged across someone’s lawn, but we managed to laugh it off :+1::slightly_smiling_face:

It started sporadically for me. Now there’s a friend of mine who calls me her “drunk friend”. I use a walker, but I wouldn’t be afraid to use a wheelchair if I had to. Actually, it would be better for me.

Thank you all who’ve responded since I last replied. I’ve been in a funk for the past couple months and doing anything beyond what I have to has just not happened.
We leave for Disney World in 6 days and I have rented a wheelchair for the entirety of our stay. When I want to (and can) walk, I’ll just use the wheelchair as a walker and push the chair.
Again, thank you to everyone! Your responses have made me feel more normal and less alone.
Xoxo,
Anna

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Hopefully you are able to relax and enjoy yourself!!

:slightly_smiling_face: I’m sure you’ll have a great time, be sure to get in touch when you get back :slightly_smiling_face:

I’ve advanced from the cane to a rollator full time. We love our beach vacations and they were becoming increasingly more difficult. So, this year we rented an electric beach wheelchair. In fact, I’m at the beach now. This is the most freedom I’ve felt in years.
Adapt to your ability. It just a matter of time until I’ll need a wheelchair full time. When that time comes I’ll adjust. Asking for help and allowing people to help is key too.

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:slightly_smiling_face: Thanks for mentioning electric beach wheelchairs :+1: I’ve posted a link in case anybody wonders what they are.
[https://www.sandhelper.com/]

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I rented the chair for 3 days while I was at the beach. The company delivered the chair after we arrived and showed me how to operate it.
Once you get to the beach the chair is amazing and provided me with a freedom I had not experienced at the beach in years.
Unfortunately getting to the beach became an issue. Details at this point are not important but let’s just say there was an issue getting from the end of the boardwalk to the beach. There was a 6” drop (at least) at the end of the boardwalk making it impossible to drive over. It took some effort to make a temporary fix and I managed for 2 days. I called and turned the chair in at the end of the 2nd day. (I was even given a refund which I was not expecting nor asked for.
A permanent fix would be an easy fix. But this is going to take some communication with the management of the hotel. To be handicap accessible means something different depending on who you talk to. It would help if that person was handicap as well as a decision maker.

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:thinking: There often seems to be an issue re whether something is actually truly disability friendly, or not. I agree, these sort of things should be planned, and tested first by a disabled person, before they are put into general use.