Hi all, for those of you who don't know me my name is Linda i run ASA.
I was born on 23 May 1987 premature weighing 900 gram. By the age of 7 years i had been in hospital a few times. Open heart operation, Mastoid in both ears, Fever convulsions the list goes on. Even the hospital staff got to know me by name. Needless to say i was a regular.
My first years at school went great. I wanted to be a nurse, i worked hard with one thing in mind the day i could start nursing college.
At age 18 years i finished Matrick and was accepted into nursing college. At the time i was volunteering at Little Eden a home for people who have profound intellectual disabilities. I would help out and read to the children. They were my inspiration, looking back they helped me . I soon realized that their are many people worse off then myself.
I had also started falling over and was very unsteady.
The first six months of nursing college went well. Then a nursing sister was on my case all the time. Needless to say she had picked up on things,spilling of water slight clumsiness ect. I was ask to leave.
My mom picked me up that day, she said i was a sad face at the side of the road. The same afternoon we went to a Neurologist for nerve conduction tests. My day could not get any worse. That's when i met my Neurologist for the first time. He told me i could sit down and cry, or get up and do something with my life.
I went home did a computer course at business college, and with help from an ataxia'n friend in the UK started ASA on facebook. ASA is going from strength to strength. My aim is to eventually get a small group of ataxian's in the Johannesburg together for a chat and coffee.
I have a question for you. If all is well a friend of mine will cycle 94.7 km with flight center, she wants to raise awareness and get sponsors for ataxia. The money she raises will come to ASA. She ask what i would do with the money.Part of the money would go to help with my internet costs.The rest could go to a web page with ataxia related articles focused on South Africa.
What do you think. I would love your ideas and input.
Thank's stay strong.
Linda.
I’m finding it hard to concentrate so it’s taking me awhile. Nice to know there’s someone here in SA who understands. My family, whilst very loving, don’t seem to realise what I’m going through. My brother died last year from cancer, so I think they are perhaps comparing how sick he looked & was to how I am and feel I’m not sick. My mom tends to always talk over me when someone asks about FA, & always ends up by talking about how sick my brother was & how he was at the end. It’s hard, & it’s making me feel like such a sham. I don’t talk very much now, because of this. We are going to see the Geneticists at Tygerburg in October, & my family are also going to have tests done. They are also going to have counselling, so I’m hoping their understanding will be better.