Friday, September 28, 2007

Sister email

With only personal data omitted, this is directly from my sister Jean, as typed:

`Dear all,
Yippee! I've got the funding through for my operation. The letter came from l[...] Ctiy ... trust, a Mr.s [...] Patel. The relevant sentence says," This is to let you know the Specialised ... Group has approved the funding and that it will inform your GP."

So the next thing to expect is a letter from Oxford asking me to come for assessment and
MRI scans which is said to take 4 days.They are then looking to see a 30% improvement with levadopa - first they'll take me off all medoscaion, then reintroduce it so they see me aat myu worsst an d my best

I saw the consultant in Cambridge yesterday and he is going to write to ask Prof. A[...] to consider bumping me up his list so that I can be done sooner than the reputed nine months waiting. He must have thought I deteriorated a lot since I saw him in July. So I'm well on the way now! One of my best friends with PD ... had the procedure done last week in Birmingham, which is the closest place that does it, with only 4 days notice so I guess they are pretty efficient when they want to get on. She has to wait 7 weeks to heal before being "switched on". She was in hospital only 3 days Monday night to Thursdsay morning because she wanted to avoid the hospital's bugs that are going around --- MRSA, Clostridium Difficile even e. coli. She had general anesthetic so didn't have to listen to her head being drilled - I think in Oxford they do it with you awake for that part but put you under for the battery implantation. I expect to hear from Oxford next week.
So there you go. My sister's going to have brain surgery. God knows she needs it!

She added a note at the bottom of the email for me: your cataloguing is stacking up again; mine also did, just when I said to anybody "Whew, I've done that whole trolley."
Yep, she knows library work all too well!

Some basic background: Jean was diagnosed with Parkinson's about 8 years ago (?) although that diagnosis has sort of morphed into MSA in the past couple of years. In any event, her muscles are essentially solidifying because they don't accept instructions from her brain properly anymore. That's the VERY basic deal here. The surgery to which she is referring is experimental; not many people have actually had it done, and in the U.S. it is still in double-blind studies. The reason I quote her email pretty much as is is because she has always been a stickler for grammar, spelling, and punctuation (former English teacher, hello!). Consider the emails a verbal stand-in for her physical deterioration, which is even more pronounced. Jean is 59, but looks a frail 80.

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