India and Health
With regards to the stem cell treatment, I am coming up to the 80-90 day benchmark for the motor neurons to be fully functional. My subjective opinion is as follows: I had about 40-60 days after the stem cell therapy where i felt very little, if any degeneration. In days 60-80, I have unfortunately felt weakening in a few areas. My left hand and index finger are becoming stiffer and weaker and my balance is becoming more unstable.
Having said this, I have been to an Occupational Therapist who did some objective pressure/ strength tests, which I also did immediately after returning from India. They use special strength measuring devices (measured in pounds/cm) which measure various movements which tells you how your strength compares to previous tests. We found my balance had improved and the strength in my right thumb was stronger, but we also found that my left hand thumb and fore finger were much weaker and my grip test in both hands was marginally weaker.
There is a strong correlation in the areas that have improved and the areas that I regularly targeted with gym and rehab exercises. This sounds like an obvious connection, but what I think is important, is that by identifying weaknesses and working on those areas, you are able to slow down/stop the progression.
I would like to try explain what my body is going through – the weakening makes me feel like i am stiff (after strenuous exercise) with lactic acid, and restricts full motion or movement with immobilising cramps. When doing strength training, the cramps restrict how much I am able to do. Another thing I am experiencing is my muscles fatigue quickly, i.e.: if I pick Molly up to carry her down the stairs, I have to stop and shift her up a couple times because she slides down my hip as I step.
Current medicine, supplements and protocols being followed.
▪ Methyl Cobalymine -(Vitamin B12) taken daily to help with energy levels and stop fatiguing
▪ Mexelytine- taken 3x daily and has been found to help outer limb progression ( hands and feet) -this is not a proven protocol but I have found it to help although it can make you feel quite woozy.
▪ Nudexta- taken 2x daily, believed to help with bulbar symptoms, swallowing, emotional outbursts, heart murmurs, excess saliva and tongue and jaw stiffening
▪ R+Pramipexole- 2xdaily, a drug that never achieved FDA approval in the USA as the success in efficacy achieved was between 25% and 35%. Those trial candidates that it did help found that it almost stopped the progression entirely. It will take about 4 months to know success or failure and I am in week 2. (6 August) and our view is 30% is still a 1 in 3 chance that it might help.
▪ Supplements which we take which are believed to assist- Omega 3 oils, Vitamin E, Vitamin B Complex, Selenium, Co-enzyme Q10, Vitamin C and Magnesium.
Our current monthly medical bill is about R35,000 of which Discovery assist with R0,00. So again thank you to all of those wonderful people who have contributed financially, you have helped enormously. I leave for India for a second round of Stem cell therapy soon and will keep you up to date.
Current Rehab Programm & OT measures
I try to do Yoga twice a week as well as 3 gym slots incorporating exercise regimes from a biokinetist, recommendations from India and a bit of self help. I should also be doing intrinsic hand exercises in the evenings, but with the arrival of Emi, bathing and dinner, I find that the last thing I feel like doing are the exercises. I will be making a more concerted effort as soon as I get back from my 2nd trip to India. I go to a sports physio and reflexologist once a week to try and loosen tight areas.
Grant Lindsay, our Doctor has been an amazing help, he has been the level head, objective party that has keep us sane and stopped us all from chasing after non-existent rainbows. We have found that as the symptoms progress, there is a tendency to get increasingly desperate to find a solution. Grant has helped us filter the sensible courses of action from the non-sensical and stopped us from wasting time, energy and funds where we otherwise would have.
We were introduced to Charles and Sue Touzel through a mutual friend. The Touzels are currently on the same journey as us – Sue was diagnosed with MND late last year. In true fighting spirit, Sue and Charles refuse to accept the prognosis and are pursuing every possible avenue to find a solution. We are in constant dialogue about cures, research or new developments as well as each others progress. I am happy to say Sue is super brave and doing really well, they joined us at a dinner recently, and if I didn’t know about her diagnosis, I would have been none the wiser.
The Touzels put us onto ALSWORLDWIDE run by Stephen, Sarah and Barbara Byer. The Byers lost their son Ben to MND about 6 years ago and have started ALSWORLDWIDE and have chosen to keep fighting for others. This family have been doing what we have, for 13 years and they know a lot more about our foe than we do. We have found Stephen and his family to be knowledgable, objective and extremely helpful. We have regular chats on Skype where we discuss all sorts of ideas, possibilities, routes to follow. We have taken their advice on lots of issues and I am sincerely grateful to have found them.
Ryan Walker Foundation.
Since my last update we have established a committee to help with the foundation. We meet regularly and discuss everything pertaining to the foundation and the efficient running of it. Thankfully we have some capable and responsible members to help us through all the little challenges that running a foundation presents. We are also grateful to have David Randles assisting us with legal issues and Sarah Martens and her team helping us on the accounting side. Paula is incredibly efficient and handles the mountains of admin issues.
Recent Fund Raising events.
Sharks Supported Golf Day at Beechwood in Durban was a lot of fun, we had a capacity field with a lot of old friends making a huge effort to join us. There were many fantastic auction items, the strangest being Jack Parow’s sneakers which have ended up in Zambia. As can be expected, there were some serious ringers and a few non-golfers who all contributed immensely. The party carried on late into the evening.
Good friends of mine came up with the idea to have a Stock Sale whereby farmers can donate an animal and the proceeds would go to the foundation. I don’t think anybody thought it would ever reach the magnitude that it did. Contributions came from all corners of Natal, and the farming community has once again re-enforced why they are such special people. There is a YouTube clip “god made a farmer” which I hope you will take the time to watch, it epitomises for me the kind of people that managed to raise over 3/4 of a million Rand in one day.
The Comrades Marathon must rank as 1 of the toughest races in the world. Greg and Buzz Briscoe finished their 1st ever run in just over 9 hours and called their run “Running for Ryan” to raise awareness and funds. What makes this feat even more special is that they ran the entire race together as a husband and wife team. I am proud to have friends like the Briscoe’s and am deeply humbled at this gesture.
Individual Donations, Ladies golf in Mooi River and Donated auction Items
There have been so many people who have made individual contributions. Every single one of these gestures, however big or small has created an incredible story of a friend who needed help and as a result of these individual acts of kindness, has enabled me to do absolutely everything possible to get better and find a solution to MND.
Crawford 7-a-side Schools Tournament was a massive success. Richard Kohne, an old rugby friend who is now the head of sport at Crawford was the mastermind and organiser behind this event. Having captained the Natal 7′s in my younger days, parallels were drawn and Crawford College very kindly offered to donate all proceeds to our foundation.
The event was held over 2 days and accommodated 16 school teams. We were lucky enough to be part of it on the Saturday and it was a fantastic occasion, offering activities for the entire family and we thoroughly enjoyed being there.
I hope it continues to grow for many years to come, it certainly has the potential to. A dinner for over 250 people was organised for the Friday evening, the beers were cold and the food was delicious, it was incredibly well organised and it was a a privilege to be a part of it.
There was an enjoyable Q&A session with some very famous rugby friends which gave great insight into the brains trust of the sharks as well as the Springboks and if it wasn’t for John Allan’s Scottish affinity for whisky, we may have gotten home before midnight.
We have been blown away by what people have done for us and the foundation, Paula, the girls and I are sincerely grateful for all the selfless acts of kindness. It is not only the massive amount of money that so many people have helped raise but the concern and compassion that has been shown to my family which is so incredible.
Thank you all for what you have done, all the events have been a massive success and you should be proud. We have been offered assistance and love every step of the way, and around every corner, thank you!
Ryan, Paula, Molly & Emmie Rose