International Ataxia Awareness Day.

Psychologically dealing with a diagnosis and the progression of ataxia is hard. Coming to terms with the fact that your legs, arms and other factors like speech and swallowing don’t do what you want is difficult.

At the beginning of the year I did some filming for a patient video and watching it I was horrified to hear how much I slurred my speech when talking.

Whilst I used a stick when my arthritis was bad, mentally accepting that I needed a mobility scooter to get around was difficult and took time to accept but now I don’t know how I ever managed without it.

All my conditions cause fatigue and the tireder I get the worse my balance and co ordination is to the point that I can be constantly dragging my feet and falling over when I’m tired.

My ataxia has also led to hand jerks spilling squash all over the place, swallowing air resulting in coughing and vomiting and falling over whilst kneeling.

Ataxia is rare and the type they think I have is even rarer so it cannot be predicted how my condition will progress which is terrifying but luckily I have amazing friends and family who help me. Even though my niece and nephew don’t understand it they love sitting on my lap on the scooter and going 4mph down the road.

Yes ataxia sucks but those of us affected are extremely lucky to live in a time when there are so many aids to help us in our day to day life. A friend recently sent me the following and it is so true

I saw this and thought it was so incredibly positive. Thought I would share

“I met a person who was in a wheelchair. He told a story about how a person once asked if it was difficult to be confined to a wheelchair. He responded, “I’m not confined to my wheelchair — I am liberated by it. My wheelchair is the reason why I am able to move about freely and go anywhere I want to. Otherwise, I would be bed-bound and It would have been really hard for me to even leave the room or this house.”