Well this might be one way for you.
You moght like to treat yuorself to a Talking Point Tote Bag.
Its got a poem on it that kind of sums up just what having the condition is like, and could just help you have that conversation. Having struggled myself to do this, it has quietly helped things sink in.
I paid for the set up charges and organised for them to be ordered from a very good firm called
0191 416 3558 ■■■■
And ask for Gary who helped me set this up.
The colours are the genetic strand colours ACGT so theres a starting point for some of you…
Let me know if you get one, and how you used it.
I had a v necked top done as well.
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I don't usually have to use the word 'ataxia'. I just say I've got bad balance (for my ataxian walk) or I've got muscles in my throat that don't work properly (for my ataxian voice). For my eyes, they can see I have a squint so no need to explain that one. If they persist I say I've got a hole in my brain (which is, as far as I know, absolutely right). If they persist any more I say that all the messages from my brain are supposed to go through that hole so these messages get a bit mixed up. If necessary I will tell people that various muscles seem to have stopped working at all. As you can see, I am not a medical person.
I absolutely hate explaining ataxia to people, some people understand and some don’t. Some of the ones that don’t aggrevate me to no end. I get suggested to do this and do that or if I just tried a little harder or prayed, that I wouldn’t have ataxia or that I could work, but no one truly understands what ataxia is unless you have ataxia or suffer from a neurological condition. Having ataxia is so tiring and for me that’s the worst part, it takes a lot more energy for me to do simple things that most take for granted.
Right on Adam people that haven’t been around it or had it just don’t understand what all we go through or the thinking we have.
It is hard to explain. The Tote Bags have been used by several people to help them ‘get’ what it is about.
Heres the link if you want the text of the poem i wrote.
Hopefully that works or if you want to private message me i can send it to you that way.
Yes the fatigue is just the worst thing. Constantly tired amd feeling drunk 24/7.
I have a rollator that helps outside, but indoors its wall sliding around.
One thing that does help is hydrotherapy, where the warm water helps with the stiffness and its the one hour in the week where i know i cant fall over.
Personally I don’t tell people about my condition, I have recently started walking with a hiking pole, but because I live in a small town and generally have pushed a buggy/stroller with my son in, hardly anyone has noticed and when they have, I just say an old injury is playing up. I explain my dysarthia when I am talking to professionals, but everyone else has never asked, so I have never said.
Yes it is so very hard to explain it to people and they try to tell you ways to deal with it and only you know the answer I so agree! I am reading up on this procedure
it is DBSDeep Stimulation Surgery but it is surgery on the brain where they put a pacemaker device in your brain! A little scary!
It was written to try and help people start that Conversation with family and friends, which often is so hard to do.
It got published in an important British neurological Journal and my very kind neurologist allowed his article on my condition to be published with it.
I had several bags made for him and his team and it has been wonderful to hear how they have used it to start conversations with colleagues about it, and where it came from…This has heartened me greatly.
I felt much of what was ‘out there’ kind of celebrated the bungy jumping and athletic achievements of those on our behalf, but for some of us just doing the washing or getting out is our Kilaminjaro, and that somehow, the real nature of some of the ataxias needed to be shown, so that when it came to talking to others it might just help.
The bags are super; they fold to nothnig, the straps are long enough, and you can get an ipad in and extra bits and bobs and its discrete enough to be not noticeable if you want it to be. The colours are the colours of the genetic code ACTG which of course the neurologists loved, so I do feel pleased that i did this.
How are you doing? Have you got a good neurologist?
Hello Sharon! Good to speak with you- glad you liked the poem!
You can order a Tote bag, or if you would like i can send you a copy of it that you can get printed onto a bag or a T shirt etc.
Just let me knpw and ill email you it.
In return could cast your eyes over a project i have been having some help with and I’d like a fresh pair of eyes to see ot and ask you what you think…Got you curious?
Email me! Lol!
I think you will like it.
PM me and we can email. Im not much good a crotchet but i do like doing silk scarves so i can show you these as well.
Best to you,
like the saying says " if you dont experiance a medical problem you wont understand it"
Isn’t that type of surgery used to put in some kind of stimuli for Parkinson’s patients?
To explain Ataxia I just tell people that I have Ataxia a condition in the brain where my cerebellum is shrinking. It causes balance, speech, eye and choking issues and right now there is no cure. End of discussion unless they ask me questions.
I just say I have a movement disorder. If it is a relative or close friend I can get them an explanation. I have been reading on DBS surgery and it is not just for PD patients It can help a number of symptoms of ataxia, or movement disorder problems, I am on Coumadin blood thinner and it can still be done but it is very dangerous because it can cause bleeding in the brain and cause other disorders such as deafness, blinding etc etc.I am having problems , very hard to take a step, talk, swallowing, spasms in the neck area. tried to get L-dopa trial to see if I had DOPA responsive ataxia or whatever and I was told I could not try L-dopa as it was for parkinsons. I think it will be good to try for DBS just to see if they are refusing me illegally…I know being on Coumadin is a good reason to not do it, but I want them to refuse me for a poor reason again. I might even refuse it because of the bleeding aspect… Jerry
Did You Know? Explaining your Ataxia diagnosis
I tried L Do pa medication and made my left eye go blurry!
I explain in different to people that are sincerely concerned but those others that u can tell they want quick answer I just say it’s like Parkinson or MS but instead in front of brain it’s in back of brain w/No cure. But mostly see doctors or nurses & they understand what it right a ways, Nurses or Tech only ask if I can walk since I’m in wheelchair (I can pivot). I feed the floor a lot
Feed the floor! Lol! Thats a great way of describing it! I think its a great pity that people feel they have to descirbe it as another condition that other people may feel more comfortable with because they ‘know’ about that one- weve got to get the word is both a symptom and an actual conditionand that for some its inherited, form some its acquired and for folk they simply do not yet know. With Ataxia Awareness Day on the 25th we need to tell folk what it’s about- -and if they are bothered, what its like to have this.
The video about is excellent- finding the right way of explaining it from anothers perspective.
People are so not kind. That’s the hardest, pushing through despite the drunk comments and laughs. It’s exhausting.