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
Hello everyone. It’s hard to believe that exactly one year ago today I arrived in Shen Zhen for stem cell treatment. So how have I faired?
I must admit that I am pleasantly surprised that the significant benefits I gained from the treatment have remained. Specifically I am still sleeping extremely well. Seven or eight hours each night and occasionally more. Because I wake up rested, I am ready to take on the world and are able to exercise regularly. This means that I am maintaining mobility.
The other significant benefit I obtained from the treatments was better bladder control. Thankfully this improvement has also has remained so live is much easier to organise.
Unfortunately once I left China and the daily rehabilitation sessions behind, the pain and numbness began returning to my legs and feet. I work at reducing the impact by using the TENS machine and visiting my dr. for acupuncture.
I hope to go back to China. Any improvement, no matter how small, means a significant improvement to my standard of life.
June 22nd, 2007
Unfortunately the feeling in my feet is starting to dull a bit. I put this down to the fact that I am not receiving the 2 or 3 hours of daily rehabilitation as I was in China. Still this has prompted me into action and I have found a GP at my local Sydney medical centre who also does acupuncture. She will give me weekly sessions that are bulk billed so will not cost me anything.
I am pleased to report that all the other improvements gained in China are still with me. Life is good. I regularly sleep a full night, no pain in my legs and feet, wonderful bladder control.
Slowly does it, but I’m getting stronger.
A few weeks ago I was presented as a Member of the Order of Australia by NSW Governor, Marie Bashir. My two children accompanied me to Government House. I was really chuffed to be recognised by the Australian government for my voluntary work with the Access Dinghy Foundation and Sailability. Below are a few photos of the afternoon.
September 18th, 2006
It’s hard to believe that it is 4 weeks to the day since my last stemcell treatment and I have been back home for 3 1/2 weeks. Well what’s been happening for me since my last blog entry? I am still recovering from the flu-like illness that I brought back but it is almost gone. I think the remaining cough is going to linger for a little while yet, but it is annoying rather than debilitating.
On the Sailability front we have written a draft plan to establish Sailability Qingdao. Jon’s wife, Rose has kindly arranged to have it translated, then she will present the plan to the Government and afterwards it will be presented to the sailing community. We are looking at the launch of Sailability in April or May. So while we are there I will plan to have my second course of stemcell treatment.
Physcial strength improvements are frustratingly slow and as I predicted, the treatment has not provided any miraculous or immediate cure. It is going to be slow and steady, achieved by determined and regular exercise. Of course other people with MS may react differently, but this is my reality.
But my treatment was a very positive experience. I have had a massive reduction in pain and generally have more feeling in my legs and feet. One of the greatest improvements is that my fatigue problems have been abolished - totally. Prior to the treatment I slept for about 4 hours each night, now I regularly get 7-8 hours. It is bliss.
I generally feel REALLY fantastic. My quality of life is excellent and I can now tackle daily exercise and wake up eager to face each day. I dont really understand this general feeling of happiness and contentment. It’s a euphoric experience that I hope continues.
August 15th, 2006
Well here I am, back in Sydney. Spent about 30 hrs in Hong Kong and managed to get out and about for 4 hrs to look around and experience the hussle and bussle. This was my first time in Hong Kong so I found it interesting. We got the ferry from Kowloon to Hong Kong and then a taxi to Aberdeen. Hong Kong was hot, humid and busy.
It is strange to be home after what seems to be nearly a lifetime in China. On Sailability work, I have spent a lot of time travelling and meeting some of the most wonderful people in the world. Wow, this time in China as confirmed my feelings that the entire human race are caring, kind and generous people. We left China with many new friends who will be helping to set up Sailability there so that the Chinese population can learn the joys of sailing. (more…)
July 23rd, 2006
I am leaving China in a few hours as fly to Hong Kong at 3pm. Last night we all went out for our final dinner together and I recorded a brief video for Jon to post on the website. I honestly feel that with the stemcells and rehabilitation I have been given a good basis to go back home and strengthen my muscles. I don’t know to what level of mobility I can reach, but without the constant pain and with more flexibility, let’s give it our best shot.
So what physical changes can I tell you about? Let’s go to my first blog entry and recap. Symptoms prior to and after treatment (more…)
July 19th, 2006
This is our last full day in China. It’s going to be sad to say goodbye to all our new friends here. These few days in Qingdao have been a fabulous experience. It has been a real pleasure being at Cheng Yang Hospital and we must thank them for their support of our endeavours to start Sailability China. Since arriving last week the Cheng Yang Hospital provided me with a van and driver to take me to various appointments. (more…)
July 18th, 2006
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