Hello to Kristin (and others),  from Adelaide South Australia

Great to read your letter, from such a caring, close knit forward looking
family.  You ask for advice.  This I am not qualified to give, but I can
tell my story and offer some thoughts.

Like your Dad, I suffered late onset  mild Parkinsonism whilst living an
active life.

My line of work was veterinary research and my fun included figure skating
on ice, wind surfing and driving (manual transmission cars), walking and
cycling.

Onset was in my mid 70's about 5 years ago and I was diagnosed a yearlater.
I was devastated and became severely depressed.  My symptoms were a little
different to your Dad's  I had little tremor but quite severe freezing.
Also I lost coordination of my feet.  I was thrown off my wind surfer
whenever my feet froze (not conducive to winning races as well as being
undignified) and I "wore out" 3 sets of clutch plates in my car in 12
months.

Since then I have found a regime for my PD which works for me.

My main activities now are caring for my invalid wife and trying to write up
my findings about PD for publication on the Web.  My wife takes priority so
the writing up is a bit slow at times.

Your Dad seems to be very much where I was in September 1994.  My wife read
(in OMNI) of an experimental treatment for depression which involved a
combination of Eldepryl and an amino acid found in chocolate.  In addition
to lifting my depression within 45 minutes, it seemed to have some effect
in moderating my Parkinsonism.

I set about experimenting with dose variations to see if the affect on PD
was real, and if so, to find the dose regime which would give me the most
benefit.

First I needed to find  a symptom that I could measure and which I could
use to monitor the effects of various treatments.  I settled on a rapid,
toe tapping exercise (which had been used in my initial diagnosis).
Counting the number of taps I could do without freezing (0 to 40) gave me a
firm basis to judge the effectiveness of any treatment I tried.

The substances I have been using are Eldepryl and either compound cooking
chocolate (initially) or (subsequently) an L-tyrosine complex (LTC) which I
get from a health food store.  There seems to be little difference between
the effect of the chocolate and the LTC, but the ingredients of the latter
were better documented, and the dosages easier to control.

Over the next 113 days I varied the dose levels and timing, of these 2
substances measuring my toe tapping at intervals of several times a day to
every 3 minutes after dosing.  I kept systematic records of doses, times
and responses, and have converted these records into a series of
dose:response graphs.

Day 1 gave some relief or several hours startyng shortly after the dose of
Eldepryl  & chocolate
Days 3&4 showed neither Eldepryl nor chocolate alone had any noticeable
effect.
Days 11 through 52, with various changes in timing, produced more and
longer relief.
Day 52 showed that with too much LTC, excess excitement resulted, but in
this excitement a breakthrough occurred and I realised the importance of
allowing Eldepryl time to act before taking LTC.  This gave  greatly
extended  relief, which I subsequently extended to a full 24 hours relief
from a single morning dose.
Days 53 through 70 saw the optimum delay  worked out and a small double
blind trial confirmed in general  my subjective findings.
Days 70 through 113 saw the level of Eldepryl  gradually reduced to 100
micrograms [yes that is just 1 per cent of the recommended daily dose!!]. I
have since found periods of up to 16 days symptom free are possible,
without medication.

Now in my 80th year I am symptom free of Parkie. Recently I won my first
ever wind surfer race, I hired a car and drove a manual shift smoothly.
Now I can put on my socks and trousers while standing. I feel no imbalance
in my legs when walking and I can do up my shirt sleeve buttons without
trouble. My neurologist proclaimed me free of signs and symptoms.  Life is
good again.

The critical features of this approach are:
A very small dose of Eldepryl
A critical time delay (I believe this gives the Eldepryl time to begin
acting as an MAO B inhibitor)
A dose of amino acids (I have been taking a combination of Phenylalanine
and Tyrosine.  I believe it is the latter,  a substance from which dopamine
is manufactured,which is the important agent).


I am writing this all up in detail to publish it as a Web Page.  However
with my increasing blindness and caring for my wife I have little time or
money to further this project (important as it is) at present.

I would love to hear further from you and your Dad, but direct E-mail to me
would be best as I do not know how much longer my eyes will let me screen
the parkinsn list for interesting letters.

For others who may be interested, I am seeking small ($25) donations in
return for further information in order to assist me complete the task of
writing up my research results and publishing them on the WEB.  With a
little assistance and encouragement, I hope to be able to have a Web Site
up in the next few weeks, though it will take some time to complete.

If you E-mail me, I will send details without necessarily waiting for your
donation to arrive.

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!

In my quest I found doctors reluctant to advise me as I was working in an
area of the "unproven".    However I kept both my GP and neurologist fully
informed of what I was doing, as I believed they only could help me if my
experiments went amiss.  Both were very interested and cooperative, for
which I am very grateful.

I would appreciate feedback to this letter.  I have been working on this
project for 2 years now, and some positive reinforcement would help me to
bring it to a conclusion.

Donations will be gratefully received at
Parkinson Project
PO BOX 320
STEPNEY  SA  5069
AUSTRALIA

Miles Pulsford <[log in to unmask]>