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Ataxia Support Network

How do you explain ataxia to people?


#21

As mine is anesthesia-induced, I simply say that because general anesthesia puts our brain to sleep…when I woke up, it looks like some areas of my brain didn’t wake back up. Anesthesia is definitely not our friend. JD


#22

Lin-da, I’m pained to hear of the awful comments you endure. Now having ataxia makes me aware of folks who do…folks i might see in a store…and aware of others looking at me when I’ve stumbled for no apparent reason. I try to bring in humor…“yep, you should see the comedic event when I manually brush my teeth!” Attempt to deflect it away like water on a duck’s back. People simply don’t understand what our ‘normal’ is. That’s okay…


#23

Lin-da, I am also sad to hear that people are so unkind. I try to focus on the fact that everyone who is really important to me knows my story. And, everyone else, I’ll probably never see again, so I don’t care what they think. Also, since I have a cane, I "look"handicapped so they may not just think I’ve been drinking a lot. But, if they do, I’ll probably never see them again…


#24

My neurologist told me ’ the nerve signals from brain to legs aren’t getting through properly’ and I find a version of this usually works quite well.


#25

I usually tell them I’ve got a shrunken little brain. I can’t do balance correction or coordination of fine movements. I’m a natural drunk. I can’t walk the straight line. It also affects my speech and swallowing, like with real drunks. So if you see me being clumsy -dropping things or bumping into things- it can’t be helped. I’ve got the “Clumsiness Disease”. :wink:


#26

my nephew came out with a new phrase, the other day,

my uncle , is a bit like car car with a gearbox made of Jelly.

I thought that was excellent for a 7 year old to come up with that statement


#27

Hi all, if I have use of a PC. I send them to an excellent PowerPoint created by
ataxia.org - here it is: http://www.ataxia.org/pdf/Ataxia_Presentation_2014.pdf


#28

Hi Henry🙂
Yes, www.ataxia.org has lots of useful info🙂 If anyone is giving a talk about ataxia, and loses this link, Ataxia Presentation can be found on the home page. Scroll down the page looking on the left🙂xB


#29

Out of the mouths of babes😉xB


#30

Excellent explanation. Thank you.


#31

Would you please send it to me?
Thank you :slight_smile:


#32

:expressionless:where can i get more info on that surgery my 9 year old son tyler was just diagnosed with AT in March of 2016. he has it because of a gene that my husband and i have the same mutated gene. it’s so hard explaining to people what exactly it is and how bad it is progressing it’s so hard to watch him lose his balance more and more each day and all the other things that happen with this disease. i just registered with the AT children’s program that all my sons reports and medical labs can be shared all over the world but it’s still hard for him to see other kids play and ride bikes or just walking down the street without falling. i will do anything and are opened to anything that will help him. this sight is the best thing i’ve have joined. so thank you to all of you out there. you all have given me hope and comfort to know i’m not alone.


#33

Hi Lucy🙂 I googled 'can Deep Brain Stimulation help A-T

There were 2 fairly positive reports regarding adults. Be guided by your son’s Neurologist’s advice on this treatment, particularly regarding children :slightly_smiling_face:xB


#34

Firstly I have researched really well what type I have because there are some differences depending on the type we have. This way, also, I can be better prepared to Answer any in depth questions. Granted many folks are just satisfied with the general term “loss of balance”. However, I like to use the term “neurological disorder” or easier said “brain disorder” because it better describes the condition I have.
The balance troubles I have are relatively easy to explain, although, once I start to speak there indicates more problems. The use of a rollator usually opens the conversation for me "what happened to you?"The use of assistive devises especially in public reduces the assumption that we are impaired. Even if we carry a cane and use it only for occasionally steadying ourselves, it reassures people that there is some form of disability.
www.ninds.nih.gov
This is my go to site for information on my condition and for many others. AT may be listed here too Lucy_wells.my_son_Ty. Typically if it is a neurological disorder it is listed here. And often times they give you helpful links to sites more specific to the condition you are searching.
I’ve never really given much thought to power point presentations about ataxia, but what a great idea! Also there are many documents and You Tube videos available, for friends and family to view (provided they are computer savy!).
www.ataxia.org
does carry very useful info and tools as well. It is my second go to site.
In conclusion, there is a ton of ataxia info out there the trick is to find it! Google is my friend! and often I just tell folks to Google “ataxia” to learn more.
Thank you Alan_Thomas for passing along the ataxia video!
Thank you FeelingOurWay for posting this. As, like many, my speech worsens. I find explaining more and more difficult. Also totes a great idea!


#35

I just tell people that I suffer from a condition that’s a bit like MS…people seem to understand what MS is.


#36

They don’t understand, they treat you different.


#37

They treat my son differently they treat me differently because they don’t know what to say to me about my son what he is going to throw it’s very hard to make friends both him and I he is gone a lot worse is the feeding tube now chronic respiratory failure looks like his cancer came back and he just can’t walk by himself anymore used to be in a motorized chair but how do I get a feel Get a vehicle that holds that type of wheelchair I have no idea and no one seems to know so somebody out there to help me deal with the mental aspect of this seeing my 10-year-old son just weather away and everything else that comes with it and appreciate your feedback thank you Lucy wells and Tyler Wells


#38

Hi Lucy🙂 Solving the problem of adapting a vehicle to take a power chair must be fairly common, I feel sure others will have a comment on this. From what I’ve read online, either telescopic hoists or lifts, seem to be the answer.
As an example of what help is out there, as a starting point you could log onto www.silvercrossauto.com :slightly_smiling_face:

Are you in contact with a local Ataxia Support Group at the moment Lucy :thinking: xB


#39

Many many good suggestions to express symptoms of ataxia.
My family doctor came to visit me at my home last evening, (not many doctors do this now).
But we were discussing various symptoms that I was experiencing, the severity and so on.
And something he said really hit home with me “because of your condition, your symptoms are that of a 90+ year old man”.
In other words I am young but living the life of an older person.
This to me seems like a good analogy.
Another thing he said was “it will seem as though your world is getting smaller” Is this ever true!


#40

I compare my condition to having too many cocktails on a moving boat. People seem to relate to that.