Blogging with Parkinson's

A personal perspective on Young Onset Parkinson's


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A Call to the PVI

This phone would be difficult to use for a call to the PVI because it has a dial, not a number pad. – Image from Wikimedia Commons.

I just made that call.

This is what it entails:

An automated voice welcomes you and asks you to state your age. Then he (the UK voice is a chap) asks you to enter your age using the ‘phone’s number pad.

Then he asks you take a deep breath and say, “Aaaaaaaaah” for as long as you can. He asks you to do this two or three times.

Next, he asks you to say “yes” and “no”; he then asks a few details such as whether you have been diagnosed with Parkinson’s or any voice disorder.

After that, he asks you to repeat a series of words and sentences after him. There are a few bits about a fictional grandfather. As I recall, there were no words in which the vowel sounds would vary greatly from north to south.*

Finally, you get thanked for your call and given a reference number, which you can – if you wish –  use to request feedback on the PVI site. You will need to give them an e-mail address if you do this.

I requested feedback, but it hasn’t arrived yet.

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*For those outside of the UK, there are distinct regional variations in the way some vowels are sounded; one of the most typical is the “a” sound in “path”. I, a midlander, pronounce this with a flat “a”; many southerners use a broad “a”, which can be readily represented by inserting an “r”: parth. I can’t think of any reasonable way of representing the short “a” except for the correct spelling; read into that what you will.


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Vocal hint for diagnosing Parkinson’s

Audio Waveform

I am a very sceptical person. Particularly, it has to be said, when I get a comment on my blog that effuses about how wonderful I am, and would I like to watch a video?

I also don’t particularly like watching videos. So I didn’t.

I do, however, like reading stuff, and there was enough in that comment that made me think it might be for real, even if the author of the comment did seem to be working for the same Web site to which she was directing me. (The site – called Newsy – seems kosher – MacWorld gave it a nice review). So I plugged a few key terms into a search engine.

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Ropinirole Diary: June 2012

This is a much neglected series of posts – but it would also have been a very boring one if I had continued at the pace that I set out at. The latest news is that I saw my consultant a few weeks ago and after talking about my hopes to get shot of the dystonia in my foot (not achieved at 12 mg), she suggested a hike to 16 mg. Apparently, it’s not really worth troubling with 2 mg increments at this level – and this dose size is, she assured me, well within the bounds of normal.

I haven’t started on that dose yet. I decided to wait until I had an official prescription for that amount, which involved a delay because I didn’t want to take yet another part-day off work for yet another medical appointment (I had two middle-of-the-day ones in my first month in this job); I have an after-work appointment later this week.


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Rave On: Ecstasy implicated in potential Parkinson’s treatment

I never was a raver. Here's Buddy Holly filtered through Steeleye Span.Health India’s headline is a tad optimistic: “Ecstasy (MDMA), a rave drug could cure Parkinson’s!” (love the ecstatic exclamation mark), but the article itself is more measured. Of course MDMA isn’t going to cure Parkinson’s. A cure is a long way off. MDMA isn’t even going to treat the symptoms of Parkinson’s – but it, or, rather, one of its analogues, might be able to ameliorate the side effects of the ultimate drug for Parkinson’s, levodopa.

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Parkinson’s to be Cowed by Vaccine?

MooCan you vaccinate against Parkinson’s? Who would such a treatment benefit?

My rather simplistic view of vaccines (based in part on school history projects on Edward Jenner’s use of Cow Pox to prevent Small Pox) is that you give a vaccine (the Latin for “cow” is “vacca”) as a preventative measure, to people who don’t already have the nasty disease. The vaccine is usually something similar to the microorganism that causes the nasty disease (often, these days, a weakened version of the real thing). The vaccine is weak enough for the immune system to fight off, and, in doing so, the immune system is prepared for fighting off the full-blown disease.

Currently undergoing initial human trials is a new drug that, apparently, primes the immune system to destroy alpha-synuclein. The human guinea pigs are 32 individuals with Parkinson’s, ten of whom have already received the treatment.

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