It seems like my symptoms get worse in crowds. Or actually i shouldnt say that when i was in a discussion with a family member my words started to slurr a bit more and o was really stiffened up in my legs. Now I’m thinking the more stress or emotion I feel the more difficult my ataxia becomes. Is there some truth to this? Anyone feel this as well?
i dont have any problem with crowds or people but i seem to get
aggatatted more often witch i think is from the ataxia. i have cerebellar ataxia
Mr. bobby,
May I ask how long it’s been since you were diagnosed? And what’s going on with you at this point? My Husband has the same diagnoses. It was March 2012 when we were told that he had a brain disease.
Dolo23,
My Husband won’t even put himself in a crowded environment. Doesn’t like being around people since his speech started slurring and everyone asks him to repeat. He gets worse as the day goes on. I think so anyway, sometimes I don’t even know what he said and that makes me feel so bad. He tells me that he’s just going to stop talking. I do think that when he takes his time speaking it’s sounds much better. He seems to have trouble controlling his walking and talking speed. And his appetite no longer has a off switch, I think he could eat constantly.
Yes, I totally feel my symptoms get worse it crowds. I know it’s because of me thinking so much more about it, just the added stress in general. I was diagnosed almost 8 years ago with spino cerebella ataxia. At first, I was great in crowds. I was semi- social. Now, I’d rather just sit home, rather than having people see me walk or whatever. It’s a hard thing to not let your emotions get the best of you. Just do the best you can.
I know exactly how he feels i too struggle with my words. Thing is i have to force myself to form the words coming out of my mouth. It is exhausting maybe thats why he doesnt like talking? Its just too much energy. Everyday i feel it getting worse. As for the walking i was really really bad at the beginning of the year. It felt like my legs would get shocked every step i took but i started taking baclofen 3 times a day. It has calmed them down enough that i can walk a bit better. Im scared though that i will get used to the pills and revert back to how i was :(.
I was diagnosed on december 2015. Not knowing what i had i thought it was my mervousness causing me to have reactions. I would much rather keep to myself.
I was diagnose in december 2015. I am 25 yrs old now. My legs stiffen up alot and when i get emotional it gets worse. I am in neuro rehab rivht now to try and help me walk better. I am taking 3 doses of baclofen to help with the stiffness which it is for the most part. I still have my reactions
Oh, you are so young. I’m so sorry that you have this terrible disease. They say it’s rare, but since I’ve been on this site it sure doesn’t seem very rare. There are so many different kinds of ataxia. I never hear of a prognosis. I guess all cases are different. I would tell you to ‘hang in there’, but my Husband hears that so much he has started hating the words. I will keep up with how you are doing, it’s sad to read about so many people with this, but at the same time it’s informative and helpful.
My speech is more slurred and get my words mixed up when stress bothers me. At first I hated to go out, but found people (most) do help.
I also have more difficulty in crowds, with speech and gait. I have SCA8. My Occupational and Physical therapists have explained the phenomena, and I understand it to be this, the cerebellum takes information from your senses and organizes and sends information to your motor centers and/or neurons. When I am in a crowd there is so much going on (noises, a lot of eye stimulus, sometimes unable to see the ground in a big crowd, smells, lights, etc.) that my cerebellum gets overwhelmed and the areas that are primarily effected by this disease, speech and gait, become exponentially more difficult. It makes me realize how much effort goes into those areas when not in a crowd. I mean this helped me see that “multitasking” --to the extent that I ever could do-- is just a “no” now. I pay close attention to the stimulus I am dealing with and adjust accordingly–for e.g. At my daughter’s basketball game I take my cane, I wear earplugs and sometimes sunglasses OR preferably I watch through the window from the quiet hall. And I no longer plan to stick around and chat with folks. That has been a big loss for me, which I feel more some days than others. When I plan ahead sometimes I am surprised by how much better I feel and CAN stay and chat.
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Sorry, one more thought, that emotional response can be seen as a result of the fight or flight response not being as controlled with this disease. In other words it is part of the disease. It has helped me to expect that my fight or flight will kick in whenever I get sensorily overwhelmed or cerebellum is challenged. So I can say, without self judgement, “yup I am getting teary and hyped up, that’s all part of it.” I mention because this gave me a bit of peace around that–separates who I am as a person from my symptoms. And three deep breaths calm that fight or flight down.
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I used to start crazy movements when people were walking towards me when I went to restaurants or packed places but have not noticed it in a while. I have different things happen depending where I am and which room I am in. In the bathroom when I am brushing my teeth or washing I bang my head against the shower door, good thing they have tempered glass now days. When in the checkout counter at the market when I get up to pay I start bouncing a bit and scare the hell out of the clerks. Jerry
I do not mind hearing hang in there although i have heard it a great deal. But thank you for your kind worda. All my doctors have told me this is rare but coming on this site has put me at ease. Makes me feel less freakish. And i read somewhere a doctor thinks my condition is a spin off of parkinsons. Which makes sense because my grandfather had parkinsons and i just found out so does my uncle. Im not sure what to make of that but it is interesting information.
That does make a lot of sense. I have begun taking xanax (prescribed) when i have to be in crowded situations like an airport or even a restaurant. I find that it relaxes me to a point where i can linger and even talk to strangers. For really crowded places i take two.
I am right there with you i hate going out. Its become way too much for me. I think im still getting used to how different everything is now.
I have what the doctors call hyper reflexes. So if i get touched a certain way a reflex would jump out. So i know what you mean every step i take makes my legs pretty much jump. If it wasnt for the muscle relaxers i dont know how I would deal.
Mine is worse in crowds also.
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Thank you so much for sharing what your Occupational and Physical therapist explained to you. It makes a lot of sense to me. Now I understand why I get so bad in crowds, stores and airports. I also have difficulty if my showers are to hot. I have a lot of difficulty seeing the ground while walking and my husband will tell me how any steps or just say step down going from the curb to the street. My depth perception just doesn’t work while walking.
Thanks again.
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I can totally relate. I have sca 5 which is rare type but cant stand crowds bc my muscles stiffin a lot more. bc I don’t wanna bump anybody and my speech slurs worse too so it makes me more nervous and I feel like I have mini panic attacks!! Suxs but gotta hang in there
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