Archive for July, 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.
So I have caught caught a cold and spent Friday and Saturday in bed recover from the journey and the cold. Today, Sunday I am feeling much better. However I am mindful of Jon’s words as we said goodbye – “Don’t overdo things for the next few months.” I am going to take life slower for sure and spend more time taking care of myself!!!! Yes, I have actually made that decision.
I do want to let you know that over the past few days I have experienced goosebumps on my legs and when I got home I got a shock to put my feet on the tiles beside my bed…….they were freezing. People have often asked me if the tiles arent too cold, and I’ve always said, “Not at all”. I will have to revise that now becaue the tiles are ridiculously cold. Maybe I do need a mat beside the bed now. On the plane from Hong Kong I was really pleased that my l
egs were able to move, and was able to flex my ankles and raise my toes. This is a definite improvement.
I will continue writing my blog and recording what’s happening for me physically. However, now I have a good dose of stemcells and know that I need to work hard for strength improvements. I’ll be back in a few days with an update.
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
After: Bladder control is better even though it wasn’t an issue before stem cells. It’s strange, before treatment I thought that for a person with MS, my bladder was functioning well. Now, it is so much better I suspect that for a middle-aged woman with MS who has had two kids, my bladder control is now phenomenal.
After: My legs are much more flexible than before. Ankles in particular are able to move a little now. While laying in bed I am able to move my legs around a bit.
Legs
Before: Not much feeling from thighs to toes.
After: Generally more feeling in legs and feet.
Before: Feeling of pain that intensifies as day progresses
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.Yesterday I went to the office of the Sailing Committee (Qingdao) of Beijing Olympic Organising Committee to meet with Dong Hai. I have been emailing him for the past three or four years so it was fantastic to finally meet face to face. Also at the meeting was Mr. Dai of the Sports Competition Dept. Dong Hai gave us a run-down the sailing venue and facilities and then we discussed how Sailability China could be established.
This morning more acupuncture and therapy and then afternoon I have the final stem cell I/V. I think the Chinese stem cells have kicked in because I was able to use chop sticks at dinner last night. Oh, I nearly forgot to let you know that my legs and feet still feel great so I am inclined move my legs about a bit more.
Here is a photo from yesterday at the Sailing Committee (Qingdao) for Beijing Organising Committee. Back L-R: Dong Hai and Mr. Dai
July 18th, 2006
Well, there is no pain in my legs and feet
July 17th, 2006
It’s early Sunday morning, so a quick update that has turned out to be not so quick……..
We are here in beautiful Qingdao. The Cheng Yang Hospital is close to the airport and about 60 km from the coast. The setup here is quite different from Nanshen Hospital in Shenzhen. Here, I am in a two room accommodation in a separate building from the hospital proper, but we are the only folks here at present. It is modern and comfortable and the staff are fantastic. Everyone speakss English in varying degrees. Our life has been made wonderfully easy as we have Katey who is our translator and makes appointments and communicates with out contacts about Sailability, and has become a good friend.
The flight to Qingdao was pretty uncomfortable as I had a wicked headache and my ears blocked on the plane. I knew before leaving Australia that I should have seen to my ears….. but you know how it is. Anyway because my ears blocked it affected my inner ears and then I felt nauseous, so I wasnt a happy girl by the time I arrived in Qingdao. To top things off, at the airport there was no awareness of what to do for people in wheelchairs and I was stuck on the plane for nearly 30 mintues. However with Jon and crew waiting in the airport with warm smiles and a beautiful bunch of flowers, I began to relax.
So first thing Friday morning I was taken to the “Ear Department” where the dr. fixed up my ear problem as quick as a flash. I was then taken to the “Eye Department” for good measure and got them checked out as well. Wonderfully efficient staff. All the nurses are fantastically friendly and I am being treated extremely well – like a queen really.
Because I wasnt feeling too well, I have had 2 hours of Rehabilitation in my room each day. This involves electro-accupuncture and electro muscle stimulation. On Friday, one of our email contacts, Mr. Chen also came to meet with us on Friday afternoon……. and in amongst all of that activity I had the 4th stem cell I/V treatment on Friday afternoon with the local QTV (Qingdao TV) filming proceedings and doing interviews with the doctors, hospital administration and me. So Friday was really action packed and I was soooooooo glad to roll into bed on Friday night.
Yesterday (Saturday) I had rehab first thing and we (Katey, Hongwai, and myself) headed off to Qingdao for the day. We met Jon and his wife, Rose at the Hai Tian Hotel where a fantastic banquet lunch was organised for us to discuss the establishment of Sailability with the Assistant Mayor of Qingdao, Mr. Wang. Mr. Wang also happens to be Vice Chairmant of the Qingdao Sailing Federation. We also met Mr. Xie, Driector Assistant of the Qindao Municipal Economy & Trade Committee.
Throughout lunch Rose helped us to explain the concept of Sailability to Mr Wang and Mr. Xie. At the end of lunch we were able to show our Chinese translated video. Rose will initially be our liaision with the Qingdao Government until a Sailability committee can ge established.
Afterwards, Mr. Shi, Chairman of the Qingdao Disability Sports Committee took us for a banquet dinner with other gentlemen from the Beijing Sailing Committee. So dinner was a discussion about Paralympic sailing, coaching, sailing venues, classificatiion etc.
So it in now 5.30 Sunday morning and we are readying ourselves for another trip to Qingdao as yesterday Mr. Wang invited us to attend a function to meet the German organisors of Kiev Week and to observe sailing activities in Qingdao. Another big day today, but as we are flying back to Hong Kong on Wednesday afternoon, there is a lot to fit in.
Soooo…….. the reason for being here (believe it or not) is stem cells. How am i feeling after the 4th treatment on Friday? I havent had time really to think too much which is possibly a good thing. Let’s see. Well I definitely have more feeling in my feet and legs. A couple of the muscles in my legs were twitching yesterday, which was a lovely memory. Yesterday morning while laying on my side I definitely had more movement in my legs and ankles and they seemed to be jerking around a bit. This wasnt particularly comfortable, but it was very different from being the blobs of nothing that they had been for the past few years, so I am not complaining.
So after today’s adventure there will be more rehab when we get back. And a final I/V for me on Tuesday afternoon. There is still a lot to do between now and then, so now that I have caught you all up, stay tuned. The internet connection is excellent here – I will just have to find the time to sit down and write.
Here are a few photos:
Katey and me Lunch – (front)
Jackie, Mr. Wang, (back) Rose, Mr. Xie, Jon and Linda.
July 16th, 2006
Here we are already packing and getting ready for the journey to Qingdao later this morning. It’s a 3 hour flight, and as Amy will accompany us, it shouldnt prove too taxing. So we say our goodbyes to our many new friends here in Shenzhen with a touch of sadness, but also with excitment for the next adventure in Qingdao.
Physically I am doing pretty good I reckon, although I am not dancing around. I am certainly more flexible and experiencing much less pain in my legs and feet. I am able to stand more comfortably for a little longer. Getting in and out of bed, wheelchair etc is easier. It is still early days, with more treatments in Qingdao.
In Qingdao I am not certain if we’ll manage internet connections, so please bear with me while I sort it out.
July 13th, 2006
Hurray….. more stem cells at last. Sounds like I have turned into a “stem cell junkie”, but no, just eager to get on with life. The procedure went very smoothly again, only took 10-15 minutes from beginning to end. Again the most difficult thing is laying still for 4-6 hours afterwards.
Remember – there are always people worse off than ourselves. Our life in Sailability constantly reminds us of that. Our good friend, Sir William Deane (past Governor General of Australia and Patron of the Access DInghy Foundation) wrote in the forward of our little book, “…… Get Your Bum Wet Again (the name of the book) reminds us of some of the important things in life – of generosity, of courage, of friendship, of true achievements, of sheer enjoyment of life even in circumstances of often profound disadvantage.”
People with a disability can have a joyous life and bring joy to the lives of those around them…. it is their peception of themselves and life that makes the difference. I remember reading once, “the difference between a rose and a weed, is just but a thought.” It’s our choice.
So, it is the next morning and no, I didn’t miraculously stand up and walk, but I didnt expect, or hope for that. I have a much firmer grasp of reality than that. But my legs and feet are warm again and this afternoon I’m back to Rehabilitation and Shung Way. On Thursday morning, before leaving Shenzhen I will give a bit of an overall assessment of where I am physically and then again before heading back to Sydney, and again regularly on the blog as time passes. It’s impossible to give a day by day commentary because it’s on again, off again; two steps forward and one stem back. I know that Seeva, my friend back in the MS Exercise class at Lidcome, is eager to hear the news – but hang in there mate, I dont want to give you false information. We all need to be patient and see what happens to my symptoms over the next few months.
Our tickets have been booked for Qingdao for Thursday afternoon. Jon has very kindly arranged for Amy to accompany us for the first few days to ensure a smooth re-location.
For the want of anything else, here is a photo of the Chinese side of the moon. That was about all I looked at last night, waiting for the time to pass.
July 11th, 2006
Yesterday’s adventure.
To satisfy a burning need from my sister, Lynne, we needed to find postcards. It seems that the sending of postcards isnt a popular pass-time in China because none of the shops or kiosks sell them. Anyway we were eventually directed to the Post Office which is about a 20 minute walk….. so it is a fair distant.
The Post Office has 6 steps to the door, so it was a bit of a task getting me in. But once there an assistant who spoke English was immediately there to assist us with our purchase. So Lynne, your post card is on its way. It rained all the way back to the hospital, but beng a swimmer, I enjoyed the tropical drenching. Again a little girl came over to speak English. What a pleasure it is that the young generation is so keen to talk English with strangers.
So all being well, there will be more stem cells for me this afternoon. In the meantime it is resting for the remainder of the day. Here are some photos of our room in the hospital. It is kept impeccably clean by the wonderfully efficient Mary. This morning our shower rose fell off, and it was only a matter of about 10 minutes before the maintenance man was here. Repairs were instigated in mere minutes, so we continue to be clean. We are looked after very well here.
My computer is connected to the stemcellschina server. It crashes sometimes and sometimes it is difficult to connect, but on the whole I am pleased to be able to maintain communication with everyone……. oh, and here’s a photo of my sister and brother-in-law (Lynne and David). Before I came to China we all spent a lovely afternoon with Sailability Point Piper on Sydney Harbour.
July 10th, 2006
Ah well. A bit more disappointment yesterday. Still no stem cells for Jackie. Still, I am scheduled for more on Monday and then again on Friday, before we head up to Qingdao on Sunday, so all is well.
Yesterday my time in Rehab was extended to include 20 minutes on the standing table. This is where you lay on a table and are strapped on. Then it tilts up so that you are in a standing position. At the time my body didnt feel like it was doing much work, but I certainly knew it once I was down again. So, it is the weekend now and we’ll have a rest from rehab and be ready to get stuck back into it next week……… our last week in Shenzhen.
Jon has kindly arranged for me to continue my daily rehabilitation at the hospital in Qingdao when we go there to talk to people about Sailability. This is most welcome as I believe that significant benefits are occurring through the rehabilitation. And while in Qingdao, Jon has also arranged for me to receive a 5th injection by I/V.
This morning while standing by the window there was the most amazing sight. A cart being pulled by a fellow on foot, was piled about 2 metres high. He was pulling the cart while the cars, buses and trucks were wizzing all around him. It was pretty impressive. Shenzhen is a modern and thriving city and then you see the fellows carrying massive loads on the bikes and hand carts. Our occupational health & safety guys wouldnt understand I dont think. Photo below.
July 8th, 2006
The doctor and Jon have just been. I told them that I had warm feet and no pain. The doctor felt my legs and said that no, they felt cold to touch still. Believe it or not, this is great news – I have cold feet and do NOT FEEL PAIN. Very interesting.
OK, friends from my MS Exercise Class at Lidcombe. Settle down and let’s see the long term outcomes. You know that things change as often as the direction of the wind.
July 7th, 2006
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