Last night we went out with Jon again to a Japanese restaurant it was very yummy. Afterwards Jon took us to a Chinese Bar. I haven’t been in a place like this since uni. It was dark, loud and smokey. I had trouble breathing at first until my lungs adjusted to the lack of oxygen in the air. I will attach some photographs at the end today. We talked a lot (in the restaurant not in the bar as conversation was impossible in the bar) about stem cells and how they are supposed to work. When I have stem cells via a lumbar puncture they are meant to work there way up to the brain and wake sleeping brain cells whilst the stem cells via IV get pumped throughout the blood stream, hopefully helping with the chronic fatigue associated with Ataxia and fingers crossed some relief from my arthritis.
There was no rehab yesterday or today so Garry & I have been doing exercises on our own. He was throwing a ball to me, I missed it of course, it nearly went out the window. We are on the 14th floor. I was practicing lifting one leg in the air & Garry made me move away from the window in case I fell out. Try explaining that one to family back home. There are no guards on any windows, OH & S is non existant, I don’t think they would have even heard of the word litigation. Going for a walk outside the hospital is like a 5 hour stint in rehab. I have been nearly run over by a bus twice, dodged numerous spits on the so called footpaths & have had to walk quite a way to find a western toilet. Garry says we will know when you are getting better as I will be able to use a Chinese toilet (a hole that you squat over, it does however flush but I don’t think they use toilet paper unless they bring their own).
I finally got through on the phone yesterday to my family via skype, the phone lines are still not operating properly. It was great to hear my Harry and Jack. I will try and call again today. I miss the boys so much.
After each blog there is space for all readers to leave comments which I can access more easily than emails. Internet access over here is very frustrating. Even more frustrating than dial up access in Australia. For anybody who knows me they understand what I’m saying.
Best go and have my IV for today. Stay tuned for the next exciting episode of………
January 2nd, 2007
I am writing this blog with an IV in my hand which contains special Chinese Medicine. I am supposed to have one every day after the first stem cell injection. We didn’t know this so when they went to give me one yesterday I tried to tell them they had the wrong person (a few translation problems that we managed to sort out).
I had pictures taken of my eyes on Saturday, a solution was put into my eyes to enlarge the pupils ( I think). I had to sit with my eyes shut for a while, when I was allowed to open them I looked at my watch to see what time it was and I couldn’t read it. Everything was blurry, I have some eyesight issues due to the Ataxia but this was very scary. They then put a piece of paper in front of my eyes and asked if this was my name (which they do before they do anything to you) and all I could say was I don’t know, I can’t read a thing. When I think about it, it is amazing how much trust I put into these people. All the doctors, nurses and Beike staff seem very genuine and caring but I have faith in their medicine too, perhaps it is because they haven’t given up on Ataxic patients as they have done in Australia. Even the constant, repetitive exercises are something doctors in Australia could have encouraged but instead they pretty much said, there isn’t anything we can do for you, so deal with you symptoms yourself.
On a lighter note we had dinner last night with a few of the patients, Jon, Sunny, Vivienne, Andrea, Joe and Marion (these are all Chinese Beike staff except Jon who is an American). We had a great night and some wonderful Chinese food. Walking to the restaurant we saw a skinned dog in another restaurant window (this of course made Garry’s day, he took lots of photos whilst I refused to look).
When the headache and the backache eased (the beds here do not help with back ache) after the first stem cell injection I realised that there wasn’t the usual throbbing pain associated with my arthritis, it has returned but I had the injection three days ago. Apparently when I have the stem cells through the IV I will feel even better and the constant fatigue may leave me for a while (Garry is looking forward to seeing if this eventuates). My IV is finished better call the nurse.
January 1st, 2007
Rachel is down in rehab having some electrified acupuncture, she suggested that I have a go, I said I would be happy to shove some needles into anyone who wanted them (that is not what she meant).
Thankfully rach is a bit better today after a bad day yesterday where she spent most of the day in bed. She will be up for a full day of rehab today. One benefit to come from the waiting at certain times is that I have read a novel from start to finish (rare for me) in 2 days (and yes it was 4x as long as a western). Un fortunately there is no english news on the TV, although there is Bloomberg of a morning which if nothing else keeps us up to date with the world markets (not sure what benefit that is rachel).
Coming back from Walmart in a Taxi the other night was interesting. First he was driving a manual but not using the clutch (now has welll rounded gears i’m sure). I went to pay him and we got into a blue over the money I gave him. His english was non-existent and my Italian background had gestures were not getting me anywhere. Anyway I handed him a $100 RMB (chinese currency where 5.8 rmb:A$1) and he gave me the change. I realised the next morning why he was going nuts when i presented the same notes (what I thought were $1 notes) to the shop downstairs and the young lass (who I think fancies me) explained that my $1 notes were 10 cent notes (trust the chinese to come up with a 10 cent note). I see now why the cabbies was going nuts and in the end ripped me off for 10rmb.
Enough stories for now (more tomorrow) as I need to go and pick Rach up from down stairs.
HAPPY NEW YEAR TO YOU ALL
NOTE: You can buy a long neck of beer for approx 40 cents on special. Their wine is not so good so far (will keep looking ).
January 1st, 2007
Rachel had here first stem cell treatment yesterday afternoon. It involved fasting for 4 hours b4 and 4 after the treatment (spinal injection) as well as lying perfectly still for 4 hrs. When she woke last night after the 4 hrs she had a terrible headache which has persisted all night and this morning. the doctors have given her more intravenus drips to get her fluids back up and have given her several shots to try and stop the ongoing headache. Rach is asleep at present, so we missed our rehab this morning.
The rehab process is intense and the people are very dedicated (so are the patients). Some try to speak english which can be both frustrating but also entertaining (their english is as good as my chinese…. perhaps they are a bit better). I had a competition with a couple of the rehab doctors yesterday trying to see who could start-stop a stop watch the quickest. This cracked them up and now they spend some time trying to come up with the best time (at least they smile at me every time I walk past)
We will try and make rehab this arvo if rachel improves.
Hope all is well with everyone back home. We miss the boys and are anxious that we not been able to talk to them since we have arrived here due to the earthquake damage off Taiwan. Hopefully it will be fixed next week
Regards
Garry
December 30th, 2006
My first stem cell injection is this afternoon. I cannot eat or drink a for four hours prior to the injection and four hours afterwards. I’ve had my accupunture and rehab exercises this morning but none this afternoon. There will be no therapists working Monday or Tuesday because of New Year public holidays.
We still haven’t been able to contact anybody back home. I really need to speak to my children. I,ve been really worried about Garry being bored whilst we are here, but he has a ball in the rehab ward with the therapists. He has got them having compeitions with the hand weights and the stop watches. Yesterday two therapists were meant to be conducting some physical tests with me and instead he had them doing races with the stop watches and then laughing at each other.
Last night Sunny and Lillian drove us to Walmart to get some groceries. This was quite an experience. The shopping was fun and the car ride was incredible. The amount of car horns going off and the lack of road rules was hilarious.
My whole body is aching today. They don’t hold back on the rehab exercises. Every muscle in my body aches and during exercises my legs shake pretty badly. Today I was meant to be on one knee whilst the other knee is up, then I have to lift my arms above my head carrying a weighted stick. This was very difficult due to the muscle aches in my legs and the shaking. It is very frustrating when your brain is telling your legs and arms what to do but they won’t listen.
I was also videod today. One of the questions they asked me was ‘What are your expectations of the treatment?’ My reply was of course “to be cured’. It is no good coming over here with anything but high hopes. If I have to I will deal with anything less later. There is only room for postive thinking here. I am really thisty and it is still 3 hours until the stem cells are here.
December 29th, 2006
We are here! We got in late last night and there was a doctor here waiting for me. Translation has not been a major problem so far. Most speak a few words of English then there is alot of hand gestures. Everyone here at the hospital is very helpful. This morning I was taken to the accupunture room where they then connected the accupunture needles to electricity; an interesting experience. This afternoon I’ve had both hands and arms massaged plus about an hour of exercise which was tiring. Garry says I’m walking better already perhaps the placebo effect working on him. We have met a Canadian woman, Christine and her father Ben who are both very nice and have been extremely helpful. Christine, like me suffers from Ataxia. She had her first stem cell injection last night, she and her father are very optimistic. My first stem cell injection is scheduled for Friday afternoon. Tomorrow is another day for accupunture, massage and rehab exercises.
We haven’t as yet been able to contact my boys or anyone else for that matter – computer problems over here which I was hoping to avoid. I miss my boys so much, every time we see something of interest we make a comment about how the boys would love that. There are so many buttons and cords in my room they would both have a field day. We passed a street stall today where they sold little knick knacks very cheaply, they were just like our $2 shops back home – Jack would have loved them. I will keep trying to call home, hopefully I will get a positive result soon.
December 27th, 2006
Today is December 16. My Husband (Garry) and I Will fly out of Australia December 26. We leave, in Australia, with family, two Sons, Jack aged 8 nearly 9 and Harry aged 5. They don’t of course have a full understanding of what or why we are going to China. They just hope Mum comes home with her wobbly legs fixed.
This blog has been created for two reasons. The first of which is paramount to my family and to Garry’s. Our life for a couple of weeks will be in the hands of Chinese Doctors at Nan Shan hospital, Shenzhen. Everyone back in Australia will be able to follow the ‘Days of Our Lives’ without any concern for our welfare. The second reason is my concern for those suffering neuroligical disorders of any kind where the process of stem cell therapy may be of assistance. I am undertaking this journey because of what I have read over the internet and have thus been able to contact people who have been through the procedure and have had some success. I am striving for a full recovery, (not that I expect it immediately or without a lot of hard work) that is, being able to walk down the street and people not think you are drunk. The decision to go to China was by no means an easy one. Lots of questions and soul searching had to take place before all doubts were put to bed. The general advice and assistance I have recieved from Mac and Jill Keenan and their son Chris has been invaluable. They have given me the courage and optimism needed to undertake this journey. Thanks Mac, Jill and Chris.
December 17th, 2006
Next Posts
