Mornin' Alison, Mornin' Fran,

It's nearly 22 years since I first visited a neurologist on my way to an eventual dx with
Parkinson's...

I resisted all form of meds as long as possible until I was tiring out and dragging myself
through the days.

Then I started Sinemet... Just one half tab of 100/25 once a day for one week; then two times
daily for the second week; and eventually three times daily around five hours apart...

The slow "building," week by week, to an eventual dosage, with a daily diary of how your body
reacts, and weekly "feedback" to your Parkinson's professional, is known as "titration"...

Titration of Parkinson's meds is correct and important I've been told for a couple of reasons...

1.) There is no pressing need for increasing to a full dosage immediately... (not like an
antibiotic for instance; a very specific drug in a specific dosage for a limited time frame...) We
are starting a regime that will last the rest of our lives with small adjustments from time to
time...

2.) We are very much "individuals" with our own unique Parkinson's, and we similarly have our
unique reactions to the Parkinson's meds... best observed as we titrate up or titrate down...

3.) It is far too easy to assume "more is better" and over medicate...

4.) It has always been my opinion that (in the case of long term Parkinson's meds) it is
probably wise to attempt to titrate to a level of medication that gives one an optimum "Quality
of Life"...

I am 60 years old this month and I am about to retire from a 41 year career on September
1st...

I've had Parkinson's for many years and inoperable lung cancer for more than a year...

It is 5AM here, I've taken my first dose of Parkinson's meds and I'm answering your e-mail
while I await their "kicking in"...

When I arose at 4:30 AM, my right hand stiff and trembling, both my feet cramping and
dystonic, I was still able to walk to the bathroom, walk to the kitchen, take my meds, and walk
to this PC, sit down and use my left hand to "type"...

When my meds kick in, typically in one half hour or so, then my feet settle down, I can walk
more normally, take my shower, use both hands etc...

I take one half tab of 100/25 standard Sinemet, one full tab of 200/50 Sinemet CR, and one full
tab of 200 mg. Comtan upon arising every morning and I repeat this dosage roughly every four
or five hours throughout my day...

I chew the one half tab of 100/25 standard Sinemet to get a quick response while awaiting the
timed medication the Sinemet CR provides...

The 200mg. Comtan "stretches" the action of the Simemet CR to span up to five hours in place
of three hours without Comtan...

Four to five to six hours later as I experience the feelings of "coming down", more tremor, more
rigidity in my right hand, I take my next dose of meds...

This works for me... (I find that a fixed-in-stone time frame gives me no flexibility to
accommodate stress, etc. so sometimes I need more meds in three hours, sometimes six...
and when I need more meds in three hours I simply take one additional 200/50 Sinemet CR by
itself... (the Comtan seems to last 5 or 6 hours always, but the Sinemet varies) ... capeche??)

I believe that this regime gives me an optimum "Quality of Life" without over medicating...

This past year I've also had the challenge of dealing with inoperable lung cancer and bouts of
chemotherapy...

I've found no reason to alter my PD meds during chemo...

I have had to accept that sometimes, in combination with chemo drugs, the PD meds
seemingly don't work as well as normally... but eventually my body adapts to the chemo and
then the PD meds are once again "predictable"...

I hope that you find this info may help you understand that PD meds are individual, with
individual reactions, and best titrated to a level that gives you an optimum "Quality of Life"
without over medicating, as this is what I'm trying to say here...

Remember... Sinemet is the Gold standard in the long term...

Be patient Fran, and don't expect a "miracle"...

Do try to titrate up 'n down a week at a time, patiently "diarizing" your feelings about this level
of medication, until you find a level of meds that "works" for you...

I suggest also that you minimize the variables and only titrate one drug at a time...

cheers ... murray

* * *

On 25 Aug 2004 at 11:25, Alison Landes wrote:

Dear List Members:

For the past 8 weeks, I have been staying at my sister, Fran's, home, helping
her and Alan, her significant other, make it through the day and night.  Once
I had pushed the "send" button on the e-mail sent minutes ago, I regretted
not mentioning in the signature line, that I am also honored to be working with
the Parkinson Action Network as the South Florida Congressional Coordinator;
focusing on getting its message and the message of the Parkinson's community at
large out in the light of day.

As part of some general background information, TCCP sponsors free exercise
classes at Sugar Sand Park for People with Parkinson's and their Care Partners,
Mondays through Thursdays at Sugar Sand Park.  We passed out fliers yesterday
with the PAN website and Grass Roots Connection web site along with telephone
numbers for the Florida Department of State Division of Elections for people
to call for Absentee Ballots (561.276.1226) and/or to find out the locations
where they can get out to vote ahead of time to avoid the lines (561.656.6200
or 1.866.868.3321).

On August 9, 2004,  I was asked to speak, on behalf of caregivers, at the
Stem Cell Awareness Day: "Rally for Cures" an event that was co-hosted by the
Genetics Policy Institute with the Miami Project to Cure Paralysis of the
University of Miami.  Speakers included Janet Reno, former United States Attorney
General, Bernard Siegel, GPI Executive Director, Sabrin Cohen, GPI advocate and
spinal cord injury patient, Alison Landes, President, Take Charge! Cure
Parkinson's, Inc. (caregiver), W. Dalton Dietrich, III, Ph.D. Scientific Director,
Miami Project to Cure Paralysis, Juan Dominguez Gendala, MSc, Ph.D. Diabetes
Research Institute, University of Miami

Again, thank you for your input on the email sent earlier and copied below:

In a message dated 8/25/04 10:49:22 AM Eastern Daylight Time, Cureparkinsons
writes:

> Subj: Your Input on medications appreciated ...
>  Date: 8/25/04 10:49:22 AM Eastern Daylight Time
>  From: Cureparkinsons
>  To: [log in to unmask]
>
>
>
> Dear List Members:
>
> Any input on the following will be appreciated...
>
> My sister, Fran (51 diagnosed 5 years ago is having a great deal of
> difficulty) switched from Permax to Requip because of the caution about leaky heart
> valve problems with Permax.  She put off starting Sinemet until agonists no
> longer were adequate and has started Sinemet with small and slow increases of
> dosage as she has had difficulties adjusting to medications.
>
> She is taking Requip 2 mg/ 3 x per day and has introduced Sinemet 1/2 of
> 25/100 mg. 4 x per day, up from 1/4 of 25/100 mg. 4 x per day.  Next week she
> will alternate the 1/2 of 25/100 and 1/4 of 25/100 for 4 x per day and the
> following week will be up to the whole tablet 25/100 mg. 4 times per day.  She is
> also taking 1/2 tablet of Lodysin 3 x per day, which is the carbidopa
> portion of the carbidopa/levodopa, to prevent nausea.  When she gets to the full
> tablet dosage, she will stop taking the extra Lodysin.
>
> Fran is experiencing alot of rigidity, difficulty walking, problem with
> balance, etc.  Do you think this is because she still needs to increase the
> Sinemet at least up to the whole tablet 25/100 mg. 4 times per day? Needs
> assistance getting in and out of bed, getting to bathroom, getting dressed, getting
> showered, eating, etc.  The rigidity is a real problem and she has a great
> deal of difficulty getting any decent amount of sleep at night for two
> reasons...
>
> the rigidity and frequent urination (whether or not there is anything much
> in the bladder).  Again, we're banking on an optimal dosage of Sinemet
> lessening the too frequent call to the restroom and the terrible rigidity.  ANY
> suggestions on ways to lessen the difficulties of these two challenges are
> greatly appreciated.
>
> Fran also thinks that the Requip is part of the problem as she doesn't
> recall having this much difficulty when she was taking the Permax.  We know that
> she has to increase the Sinemet and hoping that when she gets the dosage up
> she will be feeling better.
>
> Also, interesting to hear that one person we know is taking Eldepryly
> (Selegine) again and found it to help with her symptoms.  Fran took that early on
> and then stopped.  Are they thinking "again" there is merit to taking that
> drug and if so, what amount and when?
>
> Thanks for your input.
>
> Sincerely,
> Alison Landes
> Care Person on Fran's Team
> Founder/ President
> Take Charge! Cure Parkinson's, Inc.
> 1489 W. Palmetto Park Road  Suite  442
> Boca Raton, Florida  33486
> Tel:  561.620.1970
> Fax: 561.488.5726
> E-mail: [log in to unmask]
> Web site: www.cureparkinsons.org
>


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