Kevin Jordan shares his story – You and me vs MND
My name is Kevin Jordan and I was diagnosed with Motor Neurone Disease (MND) in 2008. My initial response was sadness, not just for me, but more for my wife, my two sons and my unborn son. My initial diagnosis was a lifespan of 3 to 5 years. I quickly (within 15 minutes) decided that I need to cram 30 years into 5 years. I also decided that I needed to be positive and live every day as if is my last. With the support of my wife I started my life with MND, fighting the progressive weakening and loss of muscle.
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I continued life as normal. I carried on working until February 2015. I travelled as much as possible. I tried to remain as independent as possible for as long as possible. Although I have proved the doctors wrong on the prognosis, still being here 8 years later, the disease has taken its toll on my body and I am now totally wheelchair bound, with limited movement of my upper and lower limbs and neck, difficulty swallowing, and limited communication. I am reliant on carers for day to day living, and on technology such as Tobii eye gaze software for communication.
In 2012, we (my wife, Carla and I) became more involved in the Motor Neurone Disease Association of SA (MNDA of SA). We also have had interaction with the J9 Foundation. We saw a real need to raise awareness of MND in South Africa, as well as raising funds for those who are less fortunate than me, who live with MND. We created our own charity, You and Me vs MND, to meet our objective. The MNDA of SA has the reach to assist those living with MND. In the past 3 years we have raised R425 000 for the MNDA of SA.
Our goal is to raise R200 000 for the MNDA of SA this year through events, raffles, donations etc. This will once again be paid over to the MNDA of SA to assist the many people in SA who have MND but have no access to the funds required to help with this disease, particularly for physical devices such as walking aids, wheelchairs, hoists, etc.
I am so grateful for the support I have received from friends and family in maintaining a good life. I also feel blessed that I can continue contributing to society. The Tobii Eyegaze system has given me the independence to carry on living life as normal as possible and keep on contributing to society. I have typed this article on my laptop with my eyes thanks to Tobii Eyegaze. Whilst I’ve been doing this I am listening to my music through iTunes. I have checked my email, Facebook and Whatsapp this morning. Yesterday I did a spreadsheet, ordered a gift for Carla online, checked out YouTube and did online banking. All with my eyes, AMAZING! I only started using it in November 2015 and I still have so much to figure out. It is a case of learning on the job. It’s great.
I am in the process of finalizing a book I’ve been working on, with the assistance of someone else. I may just be inspired to do another book using my eyes.
The MNDA of SA website will provide you with information on MND:
The You and Me vs MND Facebook awareness page will provide you with some of our thoughts, experiences and upcoming events.
Feel free to contact me via my Facebook page should you want to talk about MND or any of our initiatives.
Written by: KEVIN JORDAN
YOU & ME VERSUS MND