January 5
January 5th, 2007
I thought I would be bursting with energy today after my stem cells through an IV, but I’m not. I found therapy this morning very frustrating. My body won’t obey my brain.
Dr Wang throws a ball to me every day, most days I can throw and catch it pretty well unless I try to use only my left hand. I am of course sitting down mostly.
Walking the stairs is very frustrating too. The back of my feet kept clipping the stairs and pushing me off balance. I was getting so angry the other day I kicked the stairs which was not a good idea as I hurt my left foot, the really painfull one.
I’ve noticed that I can brush my teeth a little easier with a manual toothbrush since being here. I usually have to use an electric toothbrush.
My arthritis feels a little better today – here’s hoping! I’ve organised a few extra treatments so next week I will have another IV stem cell then Friday a spinal. I hate the spinal, not moving for 6 hours is really hard. This is what the doctor has rechommended as my last reaction was not to favourable.
I talked today to a 33 year old man who is practically wheelchair bound, he has Type 3 Ataxia, Josephs Machado Disease. He has trouble like I do with balance plus swallowing, speech is diffiult and when his eyes close on him for no reason he cannot open them again until the spasm passes. He is obviously not driving anymore. It will be interesting to see how much the stem cells improve his quality of life.
Last night when the stem cells were hooked up to me I was most upset about the size of the bag. They took about 20 minutes to go through – it was the quickest 3300 Australian dollars I’ve ever spent. And I couln’t even make myself feel any better with my sister’s saying “It’s not what you spend, it’s what you save”. I’m going to try and ring the boys again for the fourth time today. Communicfation really sux over here. 
Entry Filed under: ataxia
7 Comments Add your own
1. Pat & Michelle | January 5th, 2007 at 8:49 pm
Hi Rach and Garry,
This is the second post we have tried, hoopeully this one will get through. We are logging in almost every night to see how you are going, today is obviously not a good day. Our thoughts are with you, and our love too.
We have been in touch with Peter and Dorothy, who are trying to contact you guys by phone with the number you posted. They have had no luck so far & will keep trying.
You are in all our thoughts and we are hoping you achieve your goals.
Will try & be in touch soon.
All our love,
Shell, Pat, Connor, Mitchell & Caitlin
xxx
2. DENISE | January 6th, 2007 at 10:12 am
LOVE TO READ YOUR COMMENTS EACH DAY CAN’T WAIT TO GET TO WORK EVERYDAY AND GET ON THE INTERNET SOUNDS LIKE GARRY IS HAVING ALL THE FUN AND RACHEL’S DOING ALL THE WORK. I HAVE GONE FROM WORRY TO EXCITMENT AS I CAN DETECT (I HOPE) THAT THINGS SOUND A LITTLE BETTER.JACK AND HARRY COME INTO THE SHOP SOMETIMES AND THEY ARE HAVING THEIR FAIR SHARE OF LOLLIES. THEY SEEM TO BE ENJOYING THEIR STAY WITH GRANDMA & GRANDPA.I WILL GIVE YOU A CALL BUT I HAVE TO FIND OUT THE TIMES AS I WOULD HATE TO CALL YOU IN THE WEE HOURS OF THE MORNING.KEEP UP THE GOOD WORK . DENISE
3. Lauraine | January 6th, 2007 at 1:37 pm
Rachel – thanks again for your update – hope you are feeling okay today -I am up in Qld at the moment – home again tomorrow – i have been writing regular comments but they all appear to have disappeared – not sure what is going on. Anyway will try to post this one today and will check in when I get home tomorrow. God bless Lauraine
4. Allison McLeod | January 6th, 2007 at 2:18 pm
Hi Rachel & Gary,
I am Mac & Jill daughter, back here in Australia. I spent 2 weeks with Mum & Dad, in Nan Shan Hospital in good old Shen Zhen while Mum underwent her stem cell treatments. So I understand and picture everything that you talk about. I just want to wish you both well in your endeavour for a better quality of life. Like my parents you are both very courageous and inspiring, to not give up HOPE!! I am very big on having hope. Something that some of the medical professionals in Australia, are very quick to take away from us. At times when you feel so far away from your children, just remember why you are doing this, and know that it is all worth it! I hope the next spinal injection goes well, I know how hard it is. Keep up the good work with the rehab, it is so important. Take care
Allison
5. kelly | January 6th, 2007 at 2:40 pm
I have tried to send a commenta few times but I dont think with any success. We also try & phone about 10 times a day but can never get through we just get this recorded messageWe are all heading to newcastle on wednesday so hopefully we can email better or something keep working hard the boys are great brad took them to the pool in tamworth & they had a ball. they say hi & we love you hopefully we can talk soon. You keep milking it by the way you deserve it.
6. kelly | January 6th, 2007 at 3:15 pm
hello
7. Kim Poor | January 7th, 2007 at 4:24 am
Rachel,
The IV bag of yellow fluid they give you is Nerrve growth factor. (very expensive) the stem cells are in an injection just prior.
You’re sounding discouraged a little, as I got, too, but go down to the garden in back and sit a while. Very soothing.
You’ll get used to the routine.
Kim Poor
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