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At the 2009 World Masters Games Sailing Regatta in Sydney – October
It’s 14 months since we returned from Qingdao and my last treatment. I can positively report that things are going well healthwise for me. In fact yeasterday I realised a couple of differences:
a) I have halved the amount of Baclofen taken each day. About 6 months ago I did an experiment, by only taking 10mg at night (and not morning as well). Shortly I will drop the dosage down again to 5mg and see what happens.
b) My feet are not nearly as sensitive as they used to be. In fact for the first time in about 20 years I have started wearing sandles again. I never did because I always had to have my feet protected in socks to stop the terrible aggravation they felt when rubbing on shoes. Now my bare feet are happy in sandles….. also I dont suffer from bloated, swollen feet anymore which is not a great look for sandles 
So all in all I am still benefiting from better bladder control, less pain and wonderful nights sleeping.
Chris and I plan to return to Qingdao in May or June 2010, not for more stem cells this trip, but to establish Sailability there. Through the Access Dinghy Foundation we have donated 6 x Access 2.3 and so our return will begin sailing activities for the entire Qingdao communty.
November 29th, 2009
Hongwei - CEO of Stem Cell Treatments
It’s hard to believe how time has flown since Chris and I returned from Qingdao – almost 3 months. I’ve been extremely busy. Physically, I cant believe how well I feel.
Since the last treatment with stem cells I seem to have boundless energy, waking at 5am and on the go all day until bedtime at about 10pm. This is generally unheard of with people with MS. I sleep soundly all night which is a real joy.
So what of my MS symptoms? It is difficult to be positive but I seem to have more awareness of my body spacial perception. But :
- Previously I didnt know so what position my legs were unless I looked at them. Now though I know exactly where they are.
- Bladder control has improved more. Make’s life very easy again.
- Because I’m sleeping more and have energy, I am exercising more and as I slowly get stronger many aspects of living become easier eg getting dressed, cooking, washing up etc.
I so much miss all my friends in Qingdao and cant wait to go back to see everyone.
Xiongwei - my good friend from Rehabilitation Dept
Everyone is very friendly and helpful at Chengyang Hospital Qingdao
Mr Shi - Vice President of Qingdao Disabled Persons' Federation
Meeting with Deputy Mayor Madam Zang, during Paralympic Sailing Competition
December 11th, 2008
Well, it’s hard to believe that we’ve been in Qingdao for 3 weeks already. Time has magically flown and Chris and I have just finished packing and leave for the airport in two hours. What have we achieved? Three significant events. Each one in itself deserving of our complete attention for three weeks, so when combined at the same time I know why I am feeling a bit weary.
This trip to China has been the most wonderful experience of my whole life. Today we leave for Australia with good memories and many friends close to our hearts.
1. 4 X I/V TREATMENTS
As I mentioned before, I elected to have only I/V injections of stem cells this time because of my hectic schedule. I did not have any rehabilitation either. The spinal injections were not possible because of lack of time. Over the next few months it will be interesting to see what improvements I gain with only having received the I/V stem cells. I already feel full of life and everyone says that I am glowing. Yesterday I thought that perhaps I had a bit more feeling in my legs and that my hips were not so tight and heavy. But at this stage who knows. But watch this space as I will definitely keep my blog updated to progresses gained in the forthcoming months.
The new Chengyang Hospital facilities are excellent and very comfortable and wheelchair accessible. I had no problem getting around. The nurses were all very caring and willing to make all us foreign patients feel at home and comfortable. In the VIP Ward life is very social with everyone from all over the world sharing experiences, food and support.
2. THE PARALYMPIC SAILING COMPETITION
What a breathtaking event. Well done China, and especially Qingdao. The regatta was unbelievably successful in every respect. I was saying to Chris a few days ago that a big difference between Western society and the Chinese is that here in China every person strives to make every action perfect. While often in the West, close enough is good enough. Thank you to all the volunteers, officials and sailors who have made this such a memorable event. Today is the final goodbye to BOCOG who will send a bus to take us to the airport with Katey. We have certainly been treated exceptionally well.
3. SAILABILITY CHINA
Early next summer we will be back with a small fleet of Access Dinghies that Chris is donating to start Sailability China. The first branch will be here in Qingdao then spread out. We have had numerous meeting to get things under way. We met with:
- Deputy Mayor, Madam Zang who gave us good advice.
- Dong Yong Quan, General Manager/Commodore of the Qingdao International Yacht Club
- Mr Shi of the Qingdao Disabled Persons Sports Federation
With the support of our good friends Mr. Dai, Donghai and Mr Hu we have the basis for a Sailability China Steering Committee. Things are moving at a rate of knots. I’ll upload some photos once I rmember how.
September 20th, 2008
Chris and I have been in Qingdao for one week now. This trip to China is very different to the last one in 2006. We have specifically come at this time because the Paralympic Sailing Competition is being held here now. Chris and I are very honoured to be guests of the International Paralympic Sports Federation for this regatta, giving us full access to all areas of the venues and invited to all official functions. Today was the first day of racing. Chris is at the Sailing Venue and I am here at the Chengyang Peoples’ Hospital.
On this trip I am having 4 x I/V stem cell treatments while combining attending the Paralympic sailing. Today I received my second transplant. I know that to receive maximum benefit I should be also receiving the stem cells via spinal, but this time it is difficult timewise while having to travel between the Chengyang People’s Hospital and the Olympic/Paralympic Sailing Venue in downtown Qingdao, 60km away.
When I was here in 2006 the Stem Cell Unit was then located in a temporary building within the hospital grounds. I used to watch the new hospital being built. Now I am enjoying the fantastically comfortable, fully wheelchair accessible facilities on the 8th and 9th floor in the VIP Unit in the new hospital. It was wonderful meeting up with old friends, the Unit Administer, Hongwei (Wade) and nurse, Yolanda who both took very good care of us in 2006. My other favourite nurse, Hellan is off on maternity leave having given birth to a little boy four months ago. As usual, the standard of medical care here is exceptional. The nurses all speak English so communication is no problem.
Before coming back I was asked to send in an updated Registration Form. In the section for Current Symptons I thought that seeing as how condition had remained so stable that I would cut & paste symptoms from the first Registration Form. Well, was I very surprised to realise that I was able to delete numerous symptoms. Their decline was so subtle I didn’t even notice they were going and even forgot that I used have them. These symptoms included the tight band feeling around my torso, blurred vision when I got tired, having a nap every afternoon. So from what I can gather from this, my condition has continued to improve for quite a while and remain stable for the full two years. How amazing is that?
Tomorrow morning (Tuesday) I will return to the Sailing venue and return to Chengyang Hospital on Thursday for the third I/V treatment on Friday.
Yesterday Chris and I were invited to speak at the Happy Alice English School. We spoke about disability awareness, wheelchair etiquette and of course sailing to about twenty 10-12 year old students. We had great fun when the students were given the task of taking me into the local shopping centre to find a wheelchair accessible toilet. Me with about fifteen children all vying to have a go pushing my wheelchair through the crowd – I think we made quite a spectacle.
Here are some photos of our trip so far:
HAPPY ALICE ENGLISH SCHOOL
Students attend English classes Saturdays and Sundays for 4 years.
QINGDAO
Beautiful downtown Qingdao viewed from the sailing course.
KATEY & JACKIE
In 2006 Katey was our translator assisting with meetings to establish Sailability China. Now Katey is a very dear friend. For the Paralympics she is Secretary to the Jury for the regatta. Photo taken at a dinner with Team Portugal last Wednesday.
September 8th, 2008
It is now two years since Chris and I traveled to China for stem cell treatment. It’s hard to believe that time has gone so quickly.
But I am pleased to say that I am feeling fabulously fit and well – full of energy and very much in control of my life. The lasting benefits of improved bladder control and sleeping at night are still with me. The levels of pain in my feet and legs are dramatically less. I must admit that I am amazed that these improvements have lasted – and in fact I seem to be feeling better all the time.
Just two weeks ago I competed in the MS 24 hr Mega Swim to raise money for Multiple Sclerosis. I swam two ½ sessions, completing 1km during each session. Since the treatment in 2006, physically I have remained very stable while emotionally I seem to be improving in great leaps and bounds. I need to mention that for the past 12 months I’ve been taking LDN as well as vitamins.
I am still use my wheelchair to get around. The stem cells didn’t miraculously enable me to stand up and walk……… but even before the treatment I didn’t expect that would happen. I have been off my legs for 15 years so it would have been a big ask. But since the treatment I am far more active, energetic and extremely happy and content.
So in September this year I have made arrangements to go back to Qingdao, China for another course of stem cell treatment. It will be interesting to see what other improvements I get, or whether it will just boost the current improvements, or whether nothing at all will change. We’ll just have to wait and see. I am really looking forward to meeting up with all the friends we made there in 2006.
So watch this space in September to see what happens.
June 24th, 2008
