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.
I have had the pleasure of meeting you and Mum Linda but very interesting to read your story.. such a great inspiration to young ones.
I think bike ride is great idea for fund raising and wish you lots of luck.
Take care, Patsy
I agree with Patsy, a bike ride is a great idea for raising funds! And the way you'll use the money raised sounds like a good plan. Seems to me you've really thought this out well. My best to you and your cause...,;o)
Thank's Patsy, Rose,Scott and Trevor.
I have eighty members on ASA about twenty are South Africans and a few other South Africans who come and go.
The distance between the towns and safe public transport is a big problem over here. I have ask a couple of Johannesburg Ataxians if they would like to meet for coffee. I have not had a positive yes, they all say they will think about it. I suggested that they bring family or a friend. They are all on line friends so we are not strangers.
Trevor i ask my Neuroligist the same question, He said we don't have many Ataxians in SA and the ones we have will find me when they are ready.
Since transportation and long distances are a challenge, have you considered locating places where people could gather for a Skype call?
I know it's a stretch, but I am reminded of the webinar Oprah Winfrey hosted worldwide, discussing Eckhard Tolle's book. Groups around the world participated from coffee shops and copy centers (Kinko's?) that had Skype capability. Perhaps something like that would work for ASA.
Best of luck,
Sacramento, California, USA
thanks Kimberly yes it was something a friend and i spoke about wish us luck.
best wishes Linda.
ASA is just a klick away on your. Computer go to Facebook and type in the search box ataxia South Africa if you have not joined please do so. Just click the. Like button you are welcome to post anything. I have Ataxians. From all over the world. So we are not alone. Good luck with your dating website let me know how it goes.
I love your attitude another ataxian with a positive outlook. No one in my family has. Ataxia and I don’t have brothers or sisters and my mom and dad are only children, please join ataxia South Africa on faceboook you are welcome to post anything.
Hi Mimi how you doing. I have put Living with Ataxia's link on ASA page so now we are connected with the rest of the world.
I love the Ataxia South Africa facebook page I visit it every day! is there anyway for you to link "Living with Ataxia" with your facebook page? It would be pretty awesome if the two were connected.
Hi Mimi, I wish Dr Thomas was going to visit JHB thanks for sharing.
Hi Linda! I live in the Western Cape & have only this year been diagnosed at Tygerburg with Friedreich’s Ataxia. I am 47. My ex boyfriend has a daughter who’s an Physiotherapist, & she noted my unsteady gait. I can’t carry liquids in my hands. I still walk, but am really clumsy. I have head-bobbing & tremors, which worsen under stress. I can’t work anymore as I tend to get tired very easily now. I am studying Interior Design online though. 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.
Thank you for starting up ASA, as I feel you are vital to something I feel a lot of people unknowingly have.
this maybe of interest
Rare Diseases Conference 2016 featuring the 11th ICORD Annual Meeting
i think its a great idea. it would be good if you can help other people. but the thing i dont like about my condition [cerebellar ataxia] its one of the least researched conditions because its rare. that shouldnt make a difference. it took me longer to get the info i needed that was out there to know what they know.