"JIM"? -
You wrote -
>>> REINDELJIM <[log in to unmask]> 03/30/98 >>>I
am 58 years old and was diagnosed with early Parkinsons in
December 95. I turned down an offer to try drugs . . . <<<
My symptoms include: . . .
>>>Shaky right hand with some loss of motor control
Arm and Leg shakiness when having sex
Small, illegible handwriting
Slowness on my feet, getting of car etc.
Some difficulty with slurred speech
Stiff gait and lack of natural arm swing when walking
Treatments that I have tried or am trying are:
I was able to retire and thus reduce stress and get more
sleep
A type of acupuncture which deals with teaching my body to
more productively respond to allergens and toxins.
A herb or vitamin called NADH [trade name ENADA]
[Seemed to help but am presently not taking to see if it was
upsetting my stomach]
Nutrients prescribed by my acupuncturist.
Chiropractic Treatments; specifically Towers and Atlas
Wedge adjustments by a chiropractor trained by
Dr,Versandalls [retired]
Exercise regimen from Parkinsons Internet forum
Saunas with Niacin for detoxification
Vitamin E - 800 to 1600 I. U. /day
It is hard to measure but I believe that I am slowly getting
worse. Are any of the above treatments helping slow the rate
of degeneration, how can I tell?<<<
"JIM"? -
Parkinson's disease is a progressive disorder which
results in the gradual loss of dopamine nerve cells in the
brain, leading to a parallel decline in dopamine levels.
As of today, there is no medication manufactured for the
treatment of the disease which claims to absolutely slow the
progression of PD. Researchers have theorized that one or
another of the available therapies has a "neuroprotective"
quality. Selegiline and dopamine agonists have been used in
laboratory studies to demonstrate neuroprotective effects,
mainly because they are said to reduce the amount of
levodopa required by a patient to manage PD symptoms.
Dopamine metabolism results in the release of
oxyradicals into the blood which interferes with body cell
functions. Too many oxyradicals could lead to oxidant
stress which in turn could injure or kill dopamine nerve cells.
Therefore, the less levodopa the patient needs the less
likelihood of stressing dopamine nerve cells with excessive
oxyradicals, thereby prolonging their life.
Researchers have been trying to pin down just what
clinical, measurable physical signs exhibited by PWP could
establish that there has been or continues to be a loss of
dopamine nerve cells.
The major symptoms are: tremor, rigidity and slowness.
Doctors have created different types of objective tests to
measure each condition and how it gets externally worse
over time. These scales do not measure changes in nerve
cells, no biological measuring device exists.
In an effort to find a physical sign which predicted nerve
cell loss, researchers using PET brain scanning techniques
measured the existing loss of brain cells (using an injection
of flurodopa - which metabolizes to dopamine) in PD
patients. First, the researchers gave each PD patient a test
to measure finger and hand dexterity.
When the tests were compared with the PET scans it
was shown that slowness of movement (bradykinesia) was
the best clinical sign of PD that more directly reflects the
rate of loss of brain cells. As a patient's bradykinesia
worsens it is a marker for the rate of progression of the
disease.
When you say you are getting worse, which symptom(s)
are most troublesome? If slowness of movement (more than
tremor or rigidity) is most bothersome, then your rate of
progression may be increasing. Whether any of your
therapies (acupuncture, diet supplements or exercise) has a
neuroprotective effect can only be guessed at based upon
your subjective measurement of your symptoms.
You may wish to try using the "Daily Symptom Evaluator"
printed below, to help quantify any progression in your
symptoms.
Good luck.
"Remember, whatever you do in life, 90% is half mental."
- Yogi Berra
Stephan 53/7
Daily Symptom Status Evaluator (DSSE)
Introduction
There has been, and still is, a need to maintain a personal
journal that allows for a continual monitoring of Parkinson's
Disease (PD) symptoms over time.
There has been, and still is, a need for good communication
among, between, and with Doctors, Patients, Caregivers, and
other family members.
There has been, and still is, an awareness of the uniqueness
of each individual experiencing
PD. The DSSE allows one to track the effects of medication
administration, exercise, diet, etc by selecting two times of
day for recording. It is suggested that the initial selected
times be done with your Neurologist.
Although this DSSE was developed for a senior age
population, it certainly may be used for any age population.
The layout of the form and it's specific symptoms maybe
altered to fit any set of individual conditions that would benefit
from status evaluation monitoring
You will note that each weekly three hole sheet checklist
form is designed for ease of recording, convenience,
durability, and symptom variation. Listed on each sheet are
general or most common symptoms. There are additional
available spaces for individual characteristics that one may
elect to use. There is another monthly recording form which
allows for notation of medications: names, dosage, dates
and prescribing Doctor. Additional spaces for exercise
programs, diet or anything else you feel you would like to
record .
Coding
There are four possible daily recording codes:
+ Symptom Improvement
0 No Change
- Symptoms Getting Worse
NA Not Applicable (at this time)
Suggestions
Here are some suggestions for ease of record keeping:
1. Use a standard three ring loose leaf binder
2. Use easily obtained page protectors for
maintaining past weekly evaluations
3. Keep a glossary of personal symptoms and note
change of meanings, if such
occurs. Remember you are recording your own
reactions, they are and will be
your subjective reality. But they must be
definable
4. If you are interested in further personal research,
you might ask your long term
caregiver to keep their own DSSE based on their
defined perceptions
Acknowledgements
Many people participated in this project, People with
Parkinson's Disease, Caregivers, Neurologists,
Psychologists, Family members of PDers, Nurses and Folks
Who Care. All
were there to provide suggestions and evaluation for the
design and consideration of each
aspect of The Daily Symptom Status Evaluator. In the
process we all learned from one another,
we acquired new friends and we gave ourselves an extra bit
of loving. We encourage you
to consider this offering as a method that asks for your
involvement and revision.
BB2-97
+ Symptom Improvement
0 No Change
- Symptoms Getting Worse
NA Not Applicable (at this time)
Daily Symptom Status Evaluator (DSSE)
Weekly Record
Start Day
1 2 3 4 5 6 7
am pm am pm am pm am
pm am pm am pm am pm
Balance
Bed or Chair
Rising
Constipation
Depression
Dressing
Drooling
Falling
Facial
Expression
Freezing
Hygiene
Muscle
Cramps
Posture
Rigidity
Speech
Swallowing
Tremors
Urination
Walking
Writing
+ Symptom Improvement
0 No Change
- Symptoms Getting Worse
NA Not Applicable (at this time)
Daily Symptom Status Evaluator (DSSE)
Weekly Record
Start Day
1 2 3 4 5 6 7
am pm am pm am pm am
pm am pm am pm am pm
Daily Symptom Status Evaluator (DSSE)
Medication, Exercise, Diet and ---- Month of
Year
Medicine
Dosage
Doctor
Date
Medicine
Dosage
Doctor
Date
Medicine
Dosage
Doctor
Date
Medicine
Dosage
Doctor
Date Medicine
Dosage
Doctor
Date
Medicine
Dosage
Doctor
Date
Medicine
Dosage
Doctor
Date
Medicine
Dosage
Doctor
Date
Exercise
Diet
Other
