Welcome and glad to have you "listen" to our talk.
I would like to make a suggestion to members of this digest. When you talk
about Mom, Dad, relative, friend, or yourself, I think it would really help
if some of the history is presented like:
Age:____ Sex:____Years diagnosed ____
Is the diagnosis Parkinson's disease _____
The reasons are initially obvious but also because it is becoming more
important. I am starting to see more papers talking about Young-Onset,
Normal Onset and Late Onset. Each showing possibly different manifestations,
rate of progression and reaction to medications. Young-Onset is where the
symptoms start showing prior to age 40. Late-Onset is where . . . after age
70. Normal Onset is between 50 and 60. The missing years are more dependent
on the individual.
I will start the introductions: I am Alan Bonander, I am age 54, was
diagnosed in 1984 at the age of 44, had my first symptom around 1977 (I do
not like taking pills or seeing doctors. I would rather see a dentist
because they do something for my money like fill a hole, clean etc. After I
have seen my neurologist I have only replaced "US Green" for a few secret
code words that must be encrypted by the Pharmacist behind the high wall that
exists in must drug stores.) In 1991 I participated in a study using
duodenal infusion of liquid form of Sinemet. I have been pumping liquid form
of Sinemet along with Permax ever since. The value of duodenal infusion is
it bypasses the stomach and pylorus delivering medications directly to the
Jejunum. The delivery method is a small medical pump, an IV bag containing
the meds and a J-tube for the delivery system. I make the liquid form of the
meds by mixing Sinemet pills, vitamin C crystals, Permax pills and ordinary
"coffee grade" water. I have to filter the solution to remove the "pill
binding" as it will plug the pump lines.
In May of 1993 I had a right pallidotomy performed by Dr. Laitinen in
Stockholm, Sweden. In the right pall, a probe is inserted into the globus
pallidus of the brain. The tip is heated to cause a lesion to reduce
hyperactive neuron activity. If all goes well, many of the symptoms of PD
are reduced or eliminated on the opposite side of the body from the
operation. The operation takes as little as 50 minutes in Sweden, to as long
as 13 hours at Emory U. in Atlanta. The difference has much to do with
method of surgery. I no longer have the high sensitivity to Levodopa, my
uncontrolled sweating is gone, my left leg has less rigidity than my right
leg, my left arm has about 50% of the symptoms gone. The lesion is most
likely too small. My facial expression, energy, driving are much improved.
On good days no one knows I have PD. I still have PD. I am taking the same
level of meds as before the surgery which is correct for those on an optimal
medication program prior to surgery. They are about 900 mg of Levodopa, 150
mg of carbidopa, 2 mg of Permax, 5 mg of Eldepryl and 20 mg of Paxil.
One of the most important functions of a pharmacist is to warn patients about
possible interaction of drugs. The only way this can be done is to tell the
pharmacist what other drugs we may be taking. I purchase drugs from the
local pharmacist and from a mail order pharmacy. My local pharmacist knows
all the drugs I am taking even if I do not purchase them locally. Because
Dopamine, Serotonin and nenophenern are deficient in PD, any drug which plays
with these neurotransmitters has a potential to cause problems. Some of the
bad ones are the nausea drugs because they work on the nausea center in the
brain.
I hope I have educated you in the following:
(1) Categories of age of onset
(2) A different method for taking PD meds. (infusion)
(3) The major problem with all meds is the delivery system.
The stomach and pylorus along with food play havoc with
drugs needed on a "continuum."
(4) The important role of the local pharmacist in drug interaction
(5) The important role, we as patients should be giving to the
local pharmacist. They really are our friends.
Some day when I learn to break down the secret code used by doctors and
pharmacists, I will be able to take over the medical world.
Welcome to the PD digest -- I hope it will be beneficial for you as much as
it is for us. There is a story about a neurologist, neurosurgeon and a
pharmacist that needs to be told. All were to die by the guillotine for
giving medical assistance to the enemy.
The neurosurgeon looked at the big blade and said, "He who lives by the
blade, dies by the blade." Put my face down, knives frighten me. They did,
the blade came flying down and just stopped inches from the neck of the
surgeon. The crowd yelled, "It must be an act of God, release him." And they
did.
The neurologist was next. When asked if he wanted to be face up or face
down, he said, "I have been able to help mankind without the need for such
extravagant devices. I want my last moments to be thinking of all the
wonderful things I have done without the knife. Let me look at the good
earth. They did, the blade came flying down and just stopped inches from the
neck of the neurologist. The crowd yelled, "It must be an act of God,
release him." And they did.
They then brought the pharmacist to the gallows. When asked the same
question, he responded, "I have always looked straight in the eye of all of
life s problems patients and doctors. I have educated both when they were
ignorant of the drugs being used. I am really a problem solving man who has
served mankind "where the rubber meets the road." I want to go out of this
world as I have lived it, facing this problem. So they set him down face up
and started the drum roll. Just as the blade was about to be released, the
pharmacist yelled, "Hold it! Hold it! I see the problem -- there is a twist
in the rope that is catching . . .
Regards,
Alan Bonander ([log in to unmask])
