I will say that everyone with Ataxia should keep with them a business size card with acknowledgment of Ataxia written on it. If you are still driving or somewhere you are not familiar with. Having this card helps you with Police and any other person helping you. Also on it the words of how Ataxia effects you. Including emergency information, contact information, and where you live due to memory loss. Here is a sample of what I wrote on my card: Spinocerebellar Ataxia is a motor-musculature disorder that prevents my brain from passing information to my body correctly. Different parts of my body from head to toe will sometime tremble, eyes will wander without control, or memory loss may occur. I have difficulty with basic body functions such as moving, speaking, reading, writing and understanding others.
When I was working we would make such cards for clients, primarily for if they got lost or caught the wrong bus/public transport. Some people with disabilities can be come quite panicked and recalling of information can be difficult under some circumstances. We broke the language down into simple terms rather than a direct diagnosis as some members of the public may not actually understand a diagnostic explanation.
Medic Alert, who I am registered with, also send out a card for wallets which has a clinical diagnosis of my condition and a direct phone number. All of my details are registered with them, so if required the first responders can contact them for further more comprehensive details.
But I certainly agree that they are a good idea for people who need them. My only concern with such cards is giving unknown people personal information ie home addresses, DOB, etc. that could be used for nefarious purposes
Merl from Moderator Support
Good idea. It is needed very much. All persons should have it.
Yes, I do agree but I never use D.O.B or the like cause it’s too personal would you say so? The only information that is for Emergency should be on it!
There is a card from National Ataxia Foundation that gives only Emergency Contact # and Type of ataxia. No DOB or SS #
Great! Who made it? It looks so professional.
It’s made by “National Ataxia Foundation” and should be available through your neurologist. I got mine through Johns Hopkins.
Their contact details are on the back of the card above. I looked through their site but couldn’t find it nor any reference to it. But if you contacted them I’m sure they would be able to give you some direction in obtaining one. As Shoaib indicates, they obtained theirs via the hospital. I know for some medi cards they need to be applied for by a medical professional or at a minimum signed off by a medical practitioner. The card I have from Medic Alert needed to be signed off by my pcp.
If you find you are unable to get the info you need, say so and I’ll endeavour to follow it up for you.
Merl from the Moderator Support Team