[log in to unmask] wrote:
> Charley,
>
> I read with great interest your timing of sinemet doses. Would you
please
> share with me what dosage you are on?
> I am trying to relate sinemet to meals and snacks.
>
> Thanks Dean
Dean,
I appreciate the info. that is shared on PARKINSN List, so I am happy to
share my experience. Regarding Sinemet CR however, I would caution that
its use should be seen in the overall context of my other therapies,
medications, and state of health. My experience has been that the time
release efficiency of Sinemet CR is very dependent on how my cardiac and
digestive functions are operating.
In general, after doctor monitored self experimentation, I have been very
systematic in my use of medication. I am 50, have had PD symptoms for
at least 10 years, diagnosed with PD and began using medication about 8
years ago. My PD has advanced steadily without sudden changes over the
years.
I began using Sinemet CR about 4 years ago. (I do not have a record at
home of the date, so I am depending on memory.) Then it was Sinemet CR
200-50 twice/day, along with Selegiline, Parlodel, and Amantadine. The
Amantadine was later eliminated and the Sinemet CR increased (also see
Amantadine below). Sinemet CR 200-50 is the only prescription of Sinemet
that I have used. I have been seen by the same Neurologist for 8 years,
who advised me
to avoid early use of Sinemet.
My initial medication was Selegiline only, which I have taken
continuously over these 8 years. (However I have reduced the
Selegiline from 2x5mg/day to just 1x5mg in the morning, because of sleep
disturbance. My neurologist told me that he understands that about 90
per cent of the benefit of Selegiline comes with the first 5mg/day anyway.)
My routine is to take Selegiline first thing in the morning with my
Sinemet CR and a glass of orange juice (about 6:00 am). If I wake up
before then, which happens frequently, I usually just take the
Selegiline with 1/2 the orange juice and try to patiently wait until
6:00 to take Sinemet CR with the rest of the orange juice.
The exception to this rule is that if I wake up before 4:30 am with
"wearing off" symptoms of pain and Dystonia, which happens about
twice/week, I will take 1/2 Sinemet CR with a small glass of orange
juice and go back to bed. Usually after about 15 minutes, I fall asleep
again and sleep for about 30-45 minutes. I usually go to bed between
10:30-11:30 pm and fall asleep within about 5 minutes.
Other than orange juice, I do not eat anything for about an hour after
taking my first full Sinemet CR. About 15 minutes after taking the
Sinemet CR, I take 400 mg of SAM-e with a small glass of orange juice.
I usually eat breakfast about 7:00 am, typically a banana and cold cereal
with reduced fat, lactose free milk. I take 100 mg of Amantadine with
my concoction of about 1/2 cup coffee and 1/2 cup lactose free milk
right after breakfast. About 8:00 am, I take 1 mg of Ropinirole with a
sip of coffee.
It takes me a long time to get going, but generally I have about 2-3
hours of good time in the morning. Doing some light T'ai Chi exercise
after breakfast seems to help start me. This is usually a good time for
me to walk or do light work in the garden. Around 11:00 am, I start
having problems with Bradykinesia and freezing. I then take my second
Sinemet CR with tea and a couple of sweet cookies. (I wait until then,
because I want to me moderate in the use of Sinemet.) That gets me to
lunch at about 12:30.
I usually make a low protein lunch. While making lunch around noon, I
take my second 100 mg of Amantadine with vegetable juice. This comes
after experimentation with how much and when to take Amantadine. More
than two Amantadine/day seems to make me feel "agitated." Amantadine
later in the day disturbs my sleep. I take an across the counter
multiple vitamin with lunch.
I take my second 1 mg of Ropinirole after lunch about 1:00 pm with water.
That one seems to make me feel drowsy and I frequently nap in a chair
for 15-30 minutes.
I began using Ropinirole after discontinuing the use of Tasmar. I used
Tasmar shortly after it was released and it worked well for me,
lessening PD symptoms. I began using Tasmar after Parlodel no longer
seemed effective for me. However after more information came out about
Tasmar, which resulted in more blood tests for me, and after discussion
with both my neurologist and family physician, I decided to discontinue
its use.
I take a second 400 mg of SAM-e with water around 2 pm. Generally I am
moving good, but a little on the slow side of things until about 4:00
pm. That's when I take my third Sinemet CR, usually with something
sweet to drink and some crackers. The late afternoon is almost always
"off time" for me, so I usually just sit down with radio or tv news. I
have tried taking the third Sinemet CR with just plain water, but it
does not seem to enhance its effect. Taking it with something sweet
does seem to speed Sinemet CR's effectiveness for me.
My son and wife arrive home from their school and employment around 5:00
PM. I take my last 1 mg of Ropinirole with dinner about 6:00 pm.
Sinemet CR alone does not handle my problems with Bradykinesia and
freezing. Ropinirole seems to help me with those two problems. However
my blood pressure tends to be on the low side of normal. When I tried
taking 4 x 1 mg Ropinirole/day, my blood pressure was too low. It
probably also contributed to my auto accident with a truck, truck won.
It shook me up, fortunately no injuries, and the truck driver was
remarkably skillful and even tempered about the whole thing, especially
considering that I was at fault. I voluntarily quit driving, which I am
sure made my auto insurance company happy. That's when the Amantadine
with Ropinirole experiments began.
My evenings are usually good, until I start to slow down around 8:00 pm.
I take my fourth Sinemet CR around 9:00 (with herbal tea-primary
ingredient is Chamomile flowers) and shower and shave before I get too
slow. That last Sinemet CR usually gets me through the night.
Bottom line is that my PD has gradually progressed, but tremor is under
control. Bradykinesia and freezing continue to be big problems and
caused me to go gradually from full to part-time employment and now
disability retirement. Sometimes I need a cane for balance. I can no
longer "multi-task," which was a requirement in my previous employment.
I have difficulty with phrasing and sometimes I stutter. My hand
writing ability is gone.
But fortunately I had time to get my financial house in order. Also I
tell people that the best investment that I made was a disability
insurance policy. Paying insurance premiums for about 15 years has
really paid off for me and my family. My dealings with the federal
Social Security Administration were always correct, usually pleasant.
My former employer no longer subsidizes my medical insurance. But I am
fortunate to belong to a non-profit HMO that actually does the good
things that HMO's are suppose to do.
I have found that if I focus on what I need to do, I can have some pretty
good times experimenting with turning hobby interests into self
employment. Have not made any money at it yet, but I would have
probably spent the money anyway! I enjoy the quiet of working at home
and not having to deal with customers and management in a stressful
environment. No one gets irritated because I am so damn slow. Even when
I have Dyskinesia problems, I'm not stuck in a cubicle until 5:00, but
I can go for a walk. Also I do not spend my precious "on" times doing a
public transit commute to and from work.
Since I no longer drive my community is safer. I have had an electric
motor put on my fat wheeled Schwinn bicycle though. I can again keep up
with my ten year old on Saturday mornings!
The final and most important therapy is that after ten years or so of PD,
when I am having a particularly bad PD day and can barely move out of my
chair, I can break the silence and whisper "God have mercy on me for I
am weak." For those willing to experiment on both sides of
this list's occasional religion-science debate, I suggest trying it.
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