Jill and I are sitting in the kitchen listening to the rain. It’s not that heavy only constant- so we are hoping that it continues. We have Chris and Nicole home for the weekend and it’s great for Jill.
The decision is still at least a week away – Jill has finished her course of antibiotics and we get the results next Thursday – fingers crossed. We have continued our exercises – down at the netball courts each day as well as gym and voice. Today with this rain I might give her the day off.
We are going out to lunch when Michael arrives and later today Jill will have her hair cut and coloured. Jill has continued to lose some weight – has now lost 7.1kg. We had a phone call from the Rehabilitation department at the Hospital – Beth our physio is over in Europe helping take care of our Olympic cyclists and is away for a couple of months so we are having a new one in a couple of weeks. This may give us a different aspect as to how Jill is going.
Chris brought home a couple of 250GB portable hard drives so that we could backup the laptop – he will take one home with him and we will retain the other here and do weekly backups. We talked about storage and how it has expanded so rapidly – when we went to China in 2006 we brought a memory stick 512meg cost $98 and I just received an email from Daily Deals for a 8GB memory stick for $39.00.It is hard to remember back to floppy discs and how great they were at the time.
Time to go – hope the meal is OK
See you next week on the net
Dear Mac and Jill,
My name is Sharon, my Dad is very ill with a rare brain disease. We have been reading and corresponding with Beike and various people and their blogs. Lily and Richard who have quite a comprehensive blog pointed us toward you. Mum, Dad and I have a few questions regarding China and we are very close to making the decision to go to China, so we may even meet you one day. I live in Brisbane and Mum and Dad live in Melbourne, although they are visiting up here at the moment to avoid the Melbourne winter. I am wondering if you wouldn’t mind have a quick chat to us about your experiences and the considerations you are making prior to this trip. I am happy to call you if you let us know a suitable time. I can’t tell you how much it would mean, particularly to Mum to have a conversation to an Aussie that has experienced China. I hope you can help us. You have my email and I will email you my numbers in reply, but as I say I am more than happy to call you anytime that suits. In appreciation, Sharon.
Hi Mac
I got a new notebook.
Now I’m able to get online all day long.
I’m going to Hangzhou this weekend.
I suddenly have a question regarding to Jill’s condition:
Does Jill have any MRI of her brain?
If yes, how’s the condition of her brain?(before/after the treatment)
My mom’s MRI show that there is degeneration of the substantial nigra.(the image looks the same as that of most of the parkinson’s patients).
I’m wondering if spinal injection is enough for her.
It seems that the treatment for parkinson’s differs from the treatment for MSA.
I think I will go to Beijing to figure them out after the meeting in Hangzhou.
Jason
Mac & Jill,
Thanks for your wonderful blog concerning MSA and stem cell treatments. Especially, your follow up information after your stem cell treatment is most helpful. Most blogs do not continue after their stem cell treatments. I find it most helpful for others with MSA, who are seeking a better quality life for their love ones from this destructive and incurable illness.
Let me introduce myself, Henry & May from San Francisco, California, USA. May has been diagnosed with MSA since 2000 and has now deteriorated to a point that she required assistance in all her daily routine. For the past year, she has a 24 hours caregiver to assist her. Her speech is inaudible and writing is completely gone. Looking forward to returning her to the motherland for the stem cell treatments as soon as Beike can email an application for treatments, they send all the other information except how to apply for treatments. Her doctors have same typical answers to questions concerning stem cell treatments.
It is very frustrating to watch and cannot do anything. Thank again for sharing your experiences and information.