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Hi All,

I'm writing about a post my late grandfather Miles Pulsford made to this list in 
1996.  You can find it in the PARKINSN archives here:
https://listserv.utoronto.ca/cgi-bin/wa?A2=parkinsn;I4ij/g;19960811235517-
0400b

In answer to Barbara Mallut's question (below), it wasn't a hoax.

Miles was indeed diagnosed with Parkinson's in his mid-70s, and he was indeed 
windsurfing in his late 70s.  As I recall, he only took it up in his 60s sometime.  
And he did indeed find a treatment that controlled his symptoms, though he 
didn't know if it would work for anyone else.

Miles was an ex Veterinary Scientist and had an experimental cast of mind.  
When he was diagnosed with Parkinson's he started experimenting on himself.
He tested his Parkinson's symptoms by seeing how many times he could tap 
each foot from side to side without stalling, two times over (giving him 4 
observations: 2 left, 2 right).  He measured this at different times during the 
day and recorded how it varied with different treatments.  These are all logged 
in Excel spreadsheets.

The treatment that ended up controlling his symptoms was simple.  He'd take 
1mg of eldepryl in the morning, on an empty stomach.  9 minutes later he'd eat 
a 10g square of chocolate.

His theory as to why it worked was, from his notes,

"In broad terms, the eldepryl lowers the brain’s defences to certain chemicals 
in the blood.  The 9 minute delay is important to allow this defence-lowering to 
happen.  The chocolate contains small amounts of phenylalanine and tyrosine, 
amino acids from which the brain can make dopamine.  The eldepryl reduction 
of the brain’s defences allows a small amount of these amino acids to enter the 
brain.  The regime described appears to produce enough extra dopamine for me 
to go through the day free of Parky symptoms.  I have used other sources of 
these amino acids with equal success, but the chocolate is very convenient, 
and it works for me.  This explanation is very basic and a bit speculative as I 
have had limited resources to test it completely." 

However, he was enough of a scientist to know that the effect could have 
been due to all kinds of confounding factors.  As his email to the list said, 

"My case may be idiosyncratic.  I may have been a misdiagnosis.  But we
won't know how many people diagnosed with PD will respond as I have without
further trials.  In the meantime, the risk in trying this regime seems to
be low.  It involves taking a greatly reduced dose of Eldepryl, and
following  it shortly after with a normal food substance (chocolate).  The
result for me was immediate and dramatic improvement in symptoms.  The
critical features seem to be the combination of Eldepryl,  the amino acids
and the time delay.  There does seem to be a real danger that too large a
dose of this combination may produce hyperactivity and over excitement, but
this may be an undocumented danger faced by all who take Eldepryl shortly
before a meal!"

Anyway: he didn't go about putting his case to the list very well.  For one 
thing, he may have blown his own horn a bit about his accomplishments, which 
probably made it all seem less credible.  All I can say is: he was a pretty 
independent character, but he was proud of his achievements and liked people 
to know about them.  In this case it was unfortunate, because it made it 
sound like a made-up story.  He really did start windsurfing again, though!  And 
I remember him winning races in his age group.  He was a tough old bird, Miles 
was.

Secondly, he asked for money on an email list, which would have made him 
sound like a scammer.  He wasn't, though.  He was acting in good faith, though 
without a lot of awareness of net etiquette.  I think he was just frustrated 
that he wasn't in a position to take the research any further himself.  And 
probably also frustrated to find himself on the outside of a scientific 
establishment he'd been a part of in his working life.  It's unfortunate how he 
went about it but again: he was acting in good faith.

Anyway: I've always meant to write to the list to clear this matter up but 
never got around to it.  And if anyone is interested in any of the data Miles 
collected, I've got it all sitting on my hard drive.

Regards,
Mike






On Sun, 11 Aug 1996 19:43:34 -0400, Barbara Mallut <[log in to unmask]> 
wrote:

>I read the message from the Aussie-wind-surfing-octigenarian-with-PD with 
some
>doubts in my mind as to the legitimacy of it's author actually having PD. (OR
>of his wind surfing at 80 + years!)
>
>When he commented upon finding the correct combination of Eldepryl and
>chocololate (the latter of which I do know as having a certain medicinal
>benefit) and/or some other over-the-counter drug-product in allegedly 
"curing"
>him of PD and enabling him to once again wind surf (COWABUNGA, DUDES!)
><grinning> and drive a stick-shift car, I had my doubts as to him ever having
>PD in the first place.
>
>Then, when I saw he was $oliciting for money to carry on his "research," in a
>fit of pique I hit the delete key!!   As I watched his message disappear
>forever without my having finished reading it, I thought to myself, "this HAS
>to be a joke, right?"
>
>Unfortunately, I am NOW very frustrated 'cause I'd have liked to read to the
>ends of the message just to SEE if it was indeed some gag played upon us by
>one of our members having a 'leg-pulling-session."
>
>Does anyone have a copy of that message they can email to me, or possibly 
just
>tell me if there was a big ol "April Fools" written at the end of the message?
> Is this guy for REAL?? <grin>  And if so, I'd imagine Barb Patterson might be
>interested in seeing a message from someone soliciting for bucks pulled from
>the list.
>
>Dubiously yours....
>
>Barb Mallut
>[log in to unmask]

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