I just wanted to start off by saying how incredibly overwhelmed I am with all the support I have received from everyone over the past few weeks. It’s really been incredible and I need to just personally thank each and every one of you. It’s been truly humbling to receive the type of support that I have – so a sincere thank you to you all.
I think it is important from the outset that anyone who follows our progress, knows what we have based our decisions on. There is no recognised treatment in the world for MND sufferers, so we (when I say we, I refer to Paula, Molly and my family because it effects a much larger group of people, and sometimes harder for those people close to the person effected) are prepared to take calculated risks that we believe will help.
After long discussions with doctor Lindsay and agreement within our family unit, we agreed to 6 weeks of HBOT ( Hyperbaric Oxygen therapy) and the Stem Cell therapy.
We have chosen to do the hyperbaric therapy based on 4 main criteria:
1-Oxygen therapy is known to “collect” free radicals (toxins) from your blood system and remove them.
2-There have been trials done on mice where HBOT has extended the life expectancy by as much as 60% in mice infected with MND. This is based on increased health of mitochondria (your energy cells within your body cells)
3-There are countless cases where HBOT has dramatically helped people with superficial injuries (burns, breaks, trauma, lacerations, operations etc.)
4-The human body can survive for days without food and water but can’t last 5 minutes without oxygen. This therapy can only assist in repair of sickly motor neurones.
With regard to Stem Cell Therapy, this therapy is in its infancy, and has not produced the results expected of it as yet. In my humble opinion, I believe that this will change the future of medicine when they get it right. When dealing with a situation like ours, there is the danger of wasting a lot of precious time and money looking for miracles, so we have tried to be as objective as possible when making our decisions. We came across countless facilities across the world promising all sorts of results. We came across 2 that we liked, Neurone (Israeli/ USA company) but they are in trial phase until the 2nd part of 2015 and Neurogen Brain and Science Institute in Mumbai, which is the facility/treatment we chose.
We have chosen, this facility for a number of reasons:
1- Through all the research that we have done, we felt that Neurogen were the most realistic about expectations.
2- I spoke to a Doctor Hermangi Sane, who was diagnosed with MND in 2006, in the USA. She went for Stem Cell Therapy in 2009 and again 6 months later in 2010 at Neurogen. The therapy has arrested the progress of her MND and she has gone from being bedridden and unable to speak to walking with a Zimmerframe and being able to have a conversation. For the first time we found living proof that this disease can be stopped.
3-Many of the first world countries (USA, UK, AUSTRALIA ) had ethical (initially embryonic and foetal stem cells were the focus) issues with Stem Cell therapy and put a stop to research. Countries like India never had these restrictions/ sanctions and seem to be much further down the line with regard to research and development. * please note that the use of embryonic/ foetal stem cell therapy has never been considered.
After 4 weeks of HBOT (which I did in Durban) I went to Mumbai for the stem cell therapy. We booked the earliest, practical dates which were the 11th- 19th of April. As this was unchartered territory, Dr. Lindsay was going to travel with me to keep an objective eye on things. Unfortunately the logistics didn’t work out so at the last minute, with the help of Walter Grindrod, we shuffled a few things around and my mother Fay along with Fiona, a family friend, were with me on route to Mumbai. I spent 7 days in India and under went Stem Cell Therapy.
I have just returned and I’m in a positive frame of mind as to how the procedure went. I will send out an email, and post another update on my site next week with the details of my treatment so that you can be up to date.
Thank you all again for your unwavering support. It means more than you could imagine.