Cheryl,
Love you for what you wrote; you took the words right out of my mouth. No
offence but I am fighting it day and night with the objective of defeating
it as I have no intention of going down. Some of the list members have more
or less said to me, there's no cure and no one has been cured todate. And
accept , "it will get worse believe me". These don't exactly fill you with
a warm toasty feeling do they. I am part way through writing a brief
bio/history for the benefit of the group but here are some bulletts for now:
Diagnosed 6 April 1993
Took early retirement 31 August 1996 - effectively finished wotk January
1997
!997 Reduced mobility; stopped driving; stopped going out; needed help with
dressing, eating and bathing
Posture, monkey like
August 1997 started taking 'Alexander Technique' lessons - to learn
how to stand again and walk.
November 1997 saw the UK''s #1 Professor of Neurology; who didn't listen to
a word I said and recommended Sinemet. Was required to attend 'day hospital'
for 5 consecutive days to enable them to fine tune the dosage. This plus his
remark, " we're still not sure whether PD progress's at it's own rate or is
made worse by the medication - Sinemet. I declined!!
rest of 1997 and all of 1998 'horrendous'; marriage started to breakdown - I
sadly began to realize I was going to have to make the 'journey' alone.
September 1998, my Alexander Teacher (my Angel) told me about bromocriptine
January 1999, @something' had to be done because I couldn't face another
year like 1998; contacted GP who conferred with my Neuro and in February
started taking Permax.
March 1999 could once more dress, feed and bathe myself without any help -
less than 1mg (total) of Permax per day
July 2nd I drove my car to church; cried all the way there, through mass and
back.
late July (and through to end November) took my dog for daily walk in local
woodland - average 1.5miles. still <1mg Permax/day
Mid August, review with my normal Neuro; overcome with anxiety I couldn't
walk and was taken to his consulting room in a wheelchair. He didn't listen
to a word about my anxiety problem and tripled my dosage of Permax - like an
idiot I took it.
December 1999, Christmas the saddest ever as my wife clearly didn't want
anything to do with me; not even a hug. Facing the journey without love,
affection, support and involvement and sex, was going to be difficult.
January/February 2000 marriage collapses and I move to separate bedroom; the
beginning of lonely sleepless nights.
The emotional stress affected my progress, in fact caused regress as walking
became difficult once more. However, when I did I was upright and my arms
swung freely by my side.
Very capable at driving and would go for a long drive in the early hours.
January 2001 Severe Oedema both legs
March 2001 started Weekly Reflexology and 4 weekly Homeopathic consultations
May 2001 Hospital for 6 days as I had contracted a bacterial infection in my
right leg - something I picked up in the garden when the blisters on my foot
burst while I was working - My Garden Landscaping project started Spring
2000 and finished Summer 2003 also included establishing a Pond and laying
on Electric to my garden Hobby shed and a junction point for pond lighting
and pump. ALL THE WORK COMPLETED BY ME!
August 2001 started Sinemet 62,5 - one three times per day
2002 a better year, no increase in meds
2003, so far so good; reflexology and Alexander sessions bi-weekly, and
homoeopathic consultations every 6weeks
Walking is better; this week I relaid a Decking tile path in just 2 days.
Today I clipped a laurel bush with an Electric machine; I was perfectly
balanced
Three weeks ago I discovered a shot of regular espresso dramtically improved
mobility almost immediate;y - I bought an Espresso machine as (being
Italiann!) I like my coffee strong.
Two weeks ago I reduced Permax to 2 per day.
April I went on a detox plan - significant benefits
2 weeks ago I had my first Bowen Therapy - see www.bowen.com
Each day I take: 3 papaya enzyme tablets, 1 kelp, 2 Spirolena, 1 blu/green
algae and 1 Anti-oxidant and my homeopathic remedy (which varies)
Over the last three years, in addition to my Garden project, I have:
repaired PC's and provided telephone support to family, friends and
neighbours
diagnosed and fixed an engine/car diagnostic system for my Mercedes
technician - which the experts had abandoned
restored anntique furniture
established a large stamp collection
restarted Photography
I'm about to start making mosaics and woodcarving
I'm far from finished; I will never give in to PD! The power of one's mind
is immense and can bring about change
Oh, I don't have any tremor or Dyskinesia; anxiety is my Achilles heal.
Regards,
Marco
----- Original Message -----
From: "C. Byrne" <[log in to unmask]>
To: <[log in to unmask]>
Sent: Tuesday, June 17, 2003 3:42 PM
Subject: Re: Alternative tx
> Hi everyone,
>
> I have been reading the letters about Herbalife's benefits for
some
> and the concerns others have re: 'pushing Herbalife' in our list. This is
> an open list, or so I thought. If someone is benefiting from a product
and
> simply wants to 'share' that with others, what is the problem?? I would
> like to receive as much info as I can and hear EVERYONE'S story re: PD tx.
> I must admit, when I was doing the Ayurvedic herbs I couldn't wait to tell
> you all, in case there was someone else 'out there' that wanted to try
this
> alternative route. And, there were, AND we did. Now, for myself I chose
to
> go to Western medicine (ie. Sinemet and Mirapex) but some stuck with the
> herbs and it is interesting to hear what works for some and not for
others.
> We are our own advocates in this adventure but we are also a GROUP,
designed
> to work together and share what knowledge we have re: this mysterious
> malady.
>
> Anyway, I say, BRING IT ON, if dragonfly wings and bat's ears
helped
> someone, I WANT TO HEAR ABOUT IT! Heck, I'm desperate, I want to suck in
> all the info I can . . . I'm going down 'fightin' all the way'.
>
> Sorry, I had to ventilate, I'm really not a trouble-maker --- lol.
>
> Cheryl in Auburn, CA.
>
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