Thank you for visiting and welcome to Gavinliveslife.com. I live in Scotland with my wife and twin children, ages 6. I’ve always kept fit and healthy. In May 2012, I enjoyed a marathon relay with colleagues (running 10K piece in 0:50:37!). Five months later, in October 2012, I began to experience the first symptoms to what was later diagnosed as MND/ALS. I was 42 years old at the time.
Since being diagnosed, I’ve traveled the UK, Ireland, and across Europe in search of a solution, and continue to do so. I’ve discovered a lot of good and not so good on this journey. Gavin’s Live-Life Approach, which you’ll find on this site, is one result of this journey.
The purpose of the Gavin’s Live-Life Approach is to:
- Share with and help others in a similar situation through my experience
- Encourage others to take a positive Gavin’s Live-Life Approach, as opposed to the default no hope, end of life approach presented by the “Establishment”
- Raise awareness that “the system” is not geared up adequately to provide meaningful help
I continue to lead a full and fulfilling life while also working for a multinational information technology company. This is against all odds and is made possible by Gavin’s Live-Life Approach.
For me, a component of living fully has been participating in medical research. From February 2014 through August 2014, I participated in a clinical trial of a drug to slow, stop, and reverse the effects of ALS. The trend of the results has been positive and I have chosen to continue taking the medication beyond the scope of the trial.
Through the Euan MacDonald MND/ALS Research Centre in Edinburgh, I have also banked my own voice to be used in tandem with an eye recognition system. While eye-recognition speech systems do exist, I am the first to build one using my own voice. This communication system we have developed is a game changer and I want to ensure as many MND/ALS patients are given the opportunity to have one.
The live life route I’m taking is made possible through the ongoing support of my family, friends, and colleagues alike. Daily, Lorraine and my young children are my arms, legs, my inspiration and rock. The support provided to us by our broader family, practical and emotional, is immense. My carer, therapists and other heroes that help me day-to-day are a standout. Our countless friends are simply remarkable to Lorraine, me and the children, we are so lucky. Finally my workplace, my own team and colleagues from across the world are incredibly supportive. Day-to-day work, while at home, in the office or on business travel across Europe, the support I receive and resulting positive energy is truly amazing. Thanks to you all.
I want to thank you for visiting this site today. We are told we have a life expectancy of 2 to 5 years from onset symptoms. With Gavinliveslife approach, there is an opportunity to maximise happiness and well-being for all concerned. Thank you for your interest and specifically for your interest in Gavin’s Live-Life Approach.
Keep coming back. There will be more to my story.