I write to all the reads this and appeal to all those on the lack of knowledge of Ataxia illness and indirectly misunderstanding me (the one with the illness). I love my wife and I love my family members. They try to love me from their heart or “do” loving things for me from their heart. I tell you that from the start of my issues and not knowing why I am having issues, to learning that I have Ataxia and what it does to me. Not having a lot of information about Ataxia to learning you have Ataxia and it’s effect on me. It’s all confusing to me and I know it is confusing to the ones that love me. When you journalize your Ataxia life journey, I know it helps you understand you and your illness better. Reading information about Ataxia helps as well and your Neurological visits too. I am truly not upset with my loved ones but it is frustrating for me (the ill) that my loved ones don’t do what I ask. They do what they think is needed for me, or what is best for me that’s not alway’s the answer. I truly don’t know and will never truly try to make known the answer to the question. We all are in this knowledge of Ataxia together. Active participation to Ataxia people will always be a start for me.
Our nearest and dearest don’t always fully understand what’s going on, they have eyes and ears but usually just see what’s directly in front of them, and deal with that. As long as we as patients understand the condition, challenges, and how to cope with them by keeping ourselves safe, it’s half the battle. xB