It’s time for a quick update now that we are settled into the year.
Below is what is happening, but for a quick action to help us out, (you can read about it below) please sign this petition.
After some big expectations that I had regarding stem cells and the massive potential that they hold, my disappointment was bigger. I didn’t expect the miracle cure, but I did believe after some of the evidence that I saw on my first trip that we had a fair chance. We think that the stem cell therapy did help, albeit for a short period, so we decided that a second trip to India was worthwhile.
2nd Trip to Neurogen
An itinerary was planned, a ticket was booked (kindly upgraded to business class by a friend Greg Pearson), and before I knew it I was in the operating room at Neurogen ready for “stem cell extraction” number 2.
The “cork screw” going into my hip bone quickly reminded me of the reality of what I was doing. Was it worth it? Absolutely. To know for certain whether the stem cell therapy helped the first time, or whether it just helped my mind set. Yes, without a doubt. The procedure went according to plan and without any complications.
I was a little disappointed at the lack of facility progress at the Neurogen clinic but the doctors and staff were again incredibly helpful and are head and shoulders above any hospital staff I have experienced in SA. After 2 days rest, I was heading home to see my team of girls including 6 week old Emmi, the fattest, sweetest little girl I could have wished for.
I got back to SA 2 weeks before my 36th birthday, which we were scheduled to spend playing golf at Prince’s Grant with Paula, her 2 sisters, brothers-in laws and all the kids.
A week after getting back from India, I left my phone “downstairs” in our little house, I heard it ring and shot downstairs to answer. I shot from step 1 to 2 then bounced on 14, crashing through the kids safety gate and landed at the bottom with a crying wife, very bruised ego and 2 broken ribs. All I could think about was not waking up the kids and how my world had been rocked by MND.
There are a lot of things that are becoming increasingly difficult on a daily basis, the fall underlined the harsh reality of what MND was doing to my family. Taking away my contribution piece by piece. We are constantly making adjustments in trying to keep things as normal as possible. Instead of telling you how difficult it is trying to live a normal life with MND, I would prefer to tell you about so many amazing people who do so much with so little.
There have been so many amazing initiatives bringing awareness and education to people on the impact of MND.
- The ice bucket challenge swept across the world in what must be the most wide reaching “challenge” in human history. This was started by 2 university friends helping their mate.
- Craig Joubert phoned me to ask my permission if he could wear an MND armband for me. This was when he was reffing a rugby game between Western Province and The Blue Bulls, whose teams were all wearing arm bands in raising awareness for the late Thinus Linee and Joost VD Westhuizen respectively. What an incredible gesture coming from an incredible man.
- Cindy Warburton from Jonsson workwear rallied her team and organized an evening at the Barnyard Theatre, Gateway, raising over R70,000.
- The Teichmann Group has been nothing short of phenomenal. Spearheaded by James TeRiele and Gary Teichmann, they have offered help at every single hurdle and contributed in every possible way.
- My friends Scuba, Larney, Shaun Brokenshaw, RFP and Plettenberg Polo held a brilliant event at Kurland Park hosting SA vs England junior teams and brought fantastic awareness to Motor Neuron Disease.
- Our special friends from Mazabuka in Zambia, rode mountain bikes under the full moon and in true Zambian style had a big thrash and raised money and awareness.
The list goes on and on and I am grateful to everyone who has helped put pressure on the medical world to find a solution to stop this disease.
Talking about SOLUTIONS, we were introduced to Egon and Heidi Eggers who are on the same journey as we are. Egon is doing fantastically well. He was diagnosed around the same time as Joost and is planning on swimming the Midmar mile this year. What an incredible example to myself and others. Egon and Heidi are pro-active about finding solutions and their never-give-up attitude is inspiring.
ALS Worldwide are constantly checking in on us, they are a support group who have helped us from the beginning. They have recommended a company called NEURALSTEM, who are going to be running PHASE 3 trials in the USA and hopefully Europe. Because we aren’t US citizens, getting onto the trial in the states is not an option, so in the hope that if the trial makes it to the UK, we set up a meeting with Dr. Ammar Al-Chalabi who would run it there.
Our meeting with Prof. Ammar was set up at Kings College Hospital in London for the 15th Jan. This is the text message I sent my family after the consult “after today’s appointment at Kings College Research hospital in London I have never been more re-assured of a Doctors opinion and knowledge. Dr. Ammar is probably the top academic in neurology and motor neuron diseases in the world.
The bad news is that I have MND, triggered by the meningitis. The good news is
- It seems to be fairly slow progressing
- We are doing almost everything known to medicine to prolong and stop the progress
- Dr. Ammar has given us a few more ideas to help slow the progression even more.
- In a small% of MND sufferers, the disease has been known to stop (for no know reason) completely and
- I have a better mathematical chance (albeit small) of the disease stopping than having got it in the first place.
RE: Stem Cell Treatment- Neuralstem: this is a “Hail Mary Long shot”, it involves surgery of your spine and if Neuralstem and the Brits can come to an agreement about running the trial in the UK, Dr. Ammar has agreed to help us get involved so long as we meet the criteria. We need to decide whether it is worth the risk or not.
So, our short term goals are to try get onto the neuralstem trial in the UK and go and see Dr. MERIT CUDKOWICZ who is head of Neurology at Harvard in the USA. We have recently had some splints fitted by CB Wright in PMB to help me walk better and have scheduled an alternate treatment called Apheresis for the first 2 weeks in Feb.
There is also some very promising treatment, also in trial phase by a company called Genervon in the states. If you have a minute here is the link to try and fast track the trial, we need another 60,000 signatures to get the petition forwarded to the relevant parties.
FDA Accelerated Approval of Genervon’s GM604 for Use In ALSFDA Accelerated Approval of Genervon’s GM604 for Use In ALS
We are going to have a busy couple of months ahead of us and before I get lost in the chaos, I would like to sincerely thank you all for your interest and help in finding a cure for MND.
We are also revamping the website, so stay tuned for a new look…