I’ve wanted to thank you for accepting me into this group. Even if my illness is different (Parkinson’s Disease), I want to use your platform as an opportunity to appeal to you. Thanks a lot!
Ataxia? Parkinsons? After such a diagnosis, the question marks are big and prompt many questions and fears.No matter how you deal with it, nowadays you end up on the Internet sooner or later. It’s not exactly a blessing. A lot of unfiltered information pours down on you. You are confronted with facts that scare you.
How lucky when you find a community like Hope for Ataxia. Not only is there in-depth information here but there is a great asset in the members. These people are going through or have been through the same things as you. They know exactly how you feel. That allows trust in people whom you have never met. Talking to family and friends about fears and worries is sometimes difficult because it is a burden for them too. Here you are understood, everyone knows what you are talking about because we are in the same boat. The feeling of not being alone is priceless. You are nothing different here. The Hope for Ataxia group is a kind of haven for me.
That is the personal benefit that I have from this group. But it is also more than important socially.
Neurological diseases often cause shame in those affected. It is therefore important to raise awareness of these diseases through education and aggressive publicity and to change the image, to make it easier for those affected.