Explaining your Ataxia diagnosis video

Did you know 2016 Wednesday

Today’s topic is explaining your Ataxia diagnosis to your family.

You finally get diagnosed. You have Ataxia. You begin to tell your family but instantly and understandably they bombard you with a million questions. The first question being what’s Ataxia?
You find yourself wondering the same thing. You were so happy to have a name for this thing that’s been wreaking havoc on your life that you neglected to ask much about it. Oh and the questions you did ask were answered with this is progressive, no known cure, very rare.

What john and I have experienced is Ataxia is different everyday, sort of like the weather.

So how the heck do you explain something like this to your family.

Well, in this case less is more. Spare the details it'll just makes their eyes glaze over. You know that far away look
Yeah i think we’ve all been there.

So we describe Ataxia with Verbs. Behaviors or actions that people can see or hear. Instead of using a technical term like progressive, we describe what progressive looks like……..right now John walks funny but soon he’ll have to use a cane, and then a walker and then a wheelchair.

Something else we do is describe situations where help might be needed and what someone can do to help. We share this information with everyone that john might come in contact with on a daily basis.

Here’s an example of that; specific to John:

John’s body runs out of energy at some point every day. If you see John lying on the ground go over to him and assess his condition. If his eyes are closed you can leave him alone to rest. Check to see if his legs or arms are crossed. If they are, uncross them - that helps keep the circulation flowing. If his eyes are open get him a glass of ice water and help him take some sips. It is important to realize that he can’t talk to you in this state but he can hear you and will use his thumb to answer yes or no questions. Up is yes and down is no.

And sometimes i need to remember which is which.

So evaluate your own situation. Can you describe a scenario when you might need help. What will someone see that alerts them that you need this help. Then describe the actions they can take to help you. Write these things down and make sure to share them with those you come in contact with every day.