I am sitting in Allison’s dinning room eating breakfast and watching with envy their 50 inch Plasma. It is fantastic. We drove across on Saturday afternoon – this is the first time away from home in 5 months. Chris and Nicole arrived about 6 pm just in time for a roast chicken prepared by Allison & Chris. It was great to be with the family for the evening. We are here until Tuesday – the Jeep is due for it’s 20,000k service – under warranty we have an oil leak and must get it seen to.
We have continued our correspondence with China and part of our trip to Bendigo was to discuss with the kids the proposal that we go back to China for the next round of stem cells. I have printed off all the information for the kids to read and put in their thoughts. Jill is more worried about the cost than the trip (I think). We have been down at the net ball courts each day and she is insisting on lots of walking with the crutches – I think she is hoping she will be able to negotiate the airport on crutches – I suggested the other day that the logical way is in a wheel chair.
I received an email the other day which describes MSA very well. MSA is like Neapolitan ice cream (vanilla, choc, strawberry). Every scoop (patient) is a little different.
MSA and the Neapolitan ice cream Analogy
by Pam Bower
Think of MSA as the 3 flavoured ice creams called Neapolitan which has vanilla, chocolate and strawberry all mixed together. Imagine if you took one scoop of that ice cream and put it in a dish, then took another scoop and put it in another dish and compared the two dishes. You would notice that there is not the exact same amount of vanilla, chocolate and strawberry in both of the dishes. “Multiple System Atrophy” is the same as the Neapolitan ice cream.
There are three flavours included in MSA:
1. Shy-Drager Syndrome (SDS) – Think of it as the strawberry ice cream
2. Olivopontocerebellar atrophy (OPCA) – Think of it as the vanilla ice cream
3. Striatonigral Degeneration (SND) – Think of it as the chocolate ice cream
Whether someone is told they have SDS or OPCA or SND they all have one scoop of Neapolitan ice cream in their dish. They all have Multiple System Atrophy. If their symptoms are mainly orthostatic hypotension or urinary incontinence they have mostly strawberry ice cream in their dish (SDS). If their symptoms are mainly cerebella ataxia they have mostly vanilla ice cream in their dish (OPCA). If their symptoms are mainly tremors they have mostly chocolate ice cream in their dish (SND). If they have all of the above symptoms then they might have nearly equal amounts of chocolate, strawberry and vanilla in their dish.
I think that Jill is mainly vanilla with a small amount of Chocolate and strawberry – She will disagree because she loves anything Chocolate.
Well if I am going to put this on the net I had better do it
See you next week with our decision – and any donations will be accepted – Only a Joke
See you next week on the net.
This is a picture of Chris and one of the Salmon that he caught Fly Fishing over at Mallacoota the other weekend.
stemcellschina.com.Hi
This is Jason from Taiwan.
I was searching for the latest news of the stem cell treatment, then I found your blog on http://www.stemcellschina.com.
I would like to know something about you and you trip to China because my mom is a MSA patient,too.(suffering from pneumonia and urinary tract infection right now…she can’t even open her mouth normally.)
1. Which hospital in China did you go to for the treatment?
2. How is the overall medical environment of that hospital?
(She has tracheostomy tube and foley catheter installed. I’m wondering if the nurses over there can take care of that because my aunty and my cousin told me that most of the hospital in China doesn’t have good medical environment and advanced medical facilities… is that true?)
Any information would be much appreciated!
Thank you.
Hi Jason,
My father is also an MSA patient in Taiwan. We’ve been looking into Stem cell treatment for the past couple of months. Just out of curiosity who’s your mother’s doctor in Taiwan?
We’re just trying to figure out if there’s someone else we can speak to about his condition.
Best,
Lisa
Best,
Lisa
Hi Lisa.
Contact me at kuenlin.ho(at)gmail.com please.
I’ve talked to Dr.Wu(who is in charge of the neurology department at NTUH) for several times.
She knows that there are many clinical trails indicating that certain drugs/treatment may be helpful to the MSA patients(for example, using rHGH and G-CSF combine with Peripheral Blood Stem Cell Transplant), but NONE of the treatment mentioned above is approved by the “Department of Health, Executive Yuan” in Taiwan… that’s why I am here. I want to learn more details about the treatment in China. We can duscuss about it first and see what we can do.
See you on the mailbox:)
Jason