Archive for July, 2006
I did write my blog for yesterday but just as I pressed the publish button the server crashed and we lost it………. and I didnt want to do it again, so didnt ! ! !
Wednesday’s scheduled 3rd stem cell treatment was postponed due to a problem with production. It is re-scheduled for this afternoon. So fingers crossed we can get on with it today. This was really disappointing, but it’s important for us to get the “good stuff”.
So in between the stem cell injections I’m still spending 2 hrs each day in the Rehab Dept with Shung Way. Each day he diligently coaxes my legs to relax and bend a little bit more than the day before. Then we have the hilarious time with the acupuncture needles as my legs and feet bounce about with the treatment…. no pain – just reaction. I do believe that things are improving somwehat because this morning in bed I was able to flex my ankles a couple of mm and move my legs just a very little bit. GOOD ON YOU, SHUNG WAY. Shung Way speaks a little English. I have discovered that he is 23 and has a 20 year old brother who goes to school. He is not from Shenzhen and his family live elsewhere.
Our time every afteroon in the Rehab Dept has become the social event of the day as we “foreigners” get more familiar with the regular patients coming in for daily treatments. We have started communicating and discussing culture, which is very funny as we dont understand anything we say to each other. Yesterday in the Acupuncture Room, Bill was teaching young Elizabeth how to ballroom dance. They had quite an audience. Bill is close to 80 and the husband of Babs who is here for treatment for Ataxia. They are from Brisbane. Elizabeth is one of the three capable, English-speaking young Chinese woman who help to manage our lives up here on 19th Floor.
This moring I woke with no headache and not feeling tired like I have for the last few days, so things are good. My feet are warmish so no pain there. We are having a fantastic time here.
July 7th, 2006
Yesterday was more of the same. Resting, eating, rehab, a visit by drs. and nurses, chatting with the other patients. It is a bit of an emotional roller coaster. When I’m feeling physically well, Im on top of the world, then at other times not feeling so good. There are the expected headaches of course, but nothing too bad. They are more annoying than painful. At least I had a fabulous sleep last night, so I am in the right frame of mind to attack today with gusto.
My feet went cold again yesterday which meant the pain came back. But by the time Shung Way had finished, they were back to being toasty warm and the pain was gone. I’d like to bring Shung Way home with me. I have more stem cells this afternoon, given by way of an I/V. The dr. was saying that that generally gives an immediate improvement in circulation for 5 days. Hopefully in time the stem cells will grow so the good circulation is permanent. As I keep saying, time will tell.
There is a contingent of Eastern European families here having their children with Cerebral Palsy treated. Some from Hungary, Croatia, Romania. It is a joy having the kids around and hearing their laughter and playing in the halls. Kind of keeps me feeling grounded with reality. I admire both the children and their parents as the treatment isnt exactly a holiday. I pray that they have improvement.
July 5th, 2006
Wow, boy was I tired after Rehab yesterday. I wonder why it is so very tiring. Afterall it is Shung Way that’s doing all the work. I just lay there and be administered to. Nonetheless I was exhausted afterwards so we spent the rest of the day slouching in our room.
Shenzhen is just across the water from Hong Kong. It has a population of 13 million so is probably 3 time bigger than Sydney. We havent done much exploring but what we have seen is very clean and tidy. I spend a lot of time standing at our window on the 19th floor, fascinated at the movement of the traffic. So many cars, buses, bikes all seemingly heading in chaotic directions, yet there is a strange patience and tolerance that we dont see in Australia. The traffic flows smoothly with no accidents – lot’s of horn blowing, but that’s done in good nature it seems.
On 13th I am heading north to Qingdao where the Paralympic sailing competition will be held in 2008. Jon, who co-ordinates the treatment here for the international patients lives in Qingdao, so he will accompany us up there. With Jon’s help and contacts we’ve already made appointments to meet with numerous organisations to introduce the concept of Sailability to the good folk of China.
July 4th, 2006
Just returned from Rainbow supermarket where food supplies were replenished. The supermarket is about a 8 minute walk away. Shenzhen is similar to many other places in Asia ….. people in wheelchairs are not regularly seen and so there is a good deal of curiosity. The first day I was pretty uncomfortable with all the looks and attention, but once I realised what was happening, everything is ok. Everyone is really friendly and very eager to try out their English skills.
After a cup of tea there will be time for a bit of a rest before going down to the Rehab Dept at 2pm to see what is in store for me there.
On Friday I had a full MRI done and this morning the dr. confirmed that I had MS with scarring in brain, upper and lower spine. It was interesting to be shown why and where the trouble is. So now we need to wait and see what affect the stem cells may have on the damaged areas. This wont happen immediately though.
Interestingly, this morning when I woke there was no pain. What a delicious experience which I revelled in until my bladder demanded that I get out of bed. Nevermind, it was nice while it lasted. I’m feeling fantastic and full of energy. This excess energy could perhaps be easily explained by the fact that I’m not working 12+ hours a day like usual. Or it may be the treatment. Who knows and I dont really care, I am enjoying feeling somewhat normal, if for only short bursts of time.
Thank you to all my dear family and very good friends who send their good wishes. Life is good here. All of us “foreigners” on the 19th Floor are waiting for the stem cells to kick in so we can use chop sticks.
July 3rd, 2006
Well I have been here in Shenzhen for just over a week, and have settled in to the routine, met some fantastic people from all over the world and got to know the good folk that take such wonderful care of us on the 19th Floor.
I am having daily rehabilitation with Shung Way who is relaxing the spasms in my legs through massage, manipulation, acupucture and electro stimulation. A bit of an uphill battle, but nonetheless we are getting there.
On Friday I received the second dose of stem cells, this time by way of lumber puncture. Lucy who administered it, is of course a master and there was no difficulty whatsoever. My main problem was laying still for 5 hours afterwards. .
So, what improvements or differences you ask. So do I. At this stage it is difficult to be subjective, however yesterday we went out into the garden and while sitting under a tree I took off my shoes and I felt the blades of grass tickling the soles of my feet. That is an experience that I had forgotten. It is early days yet, but I am feeling really well and looking forward to the coming months.
Before coming over here I should have replaced the tyres on the front wheels of my wheelchair, but me being me, didnt. So just a day or so after arriving in Shenzhen, I was rolling around on “square” wheels. Most uncomfortable. However Sunny very efficiently arranged for new wheels to be ordered and on Saturday a gentleman from the wheelchair shop come up to our room and fitted new wheels…. They cost A$8 each. Amazing. A big thank you to Sunny for taking care of all that for us with a minimum of fuss. Yesterday Grace and Sunny organised afternoon tea for us all with Chinese tea and a variety of creamy cakes. Take a look at Jill and Mack’s blog as Mack was taking photos.
July 2nd, 2006
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