To the group:
Several people have asked what am doing for treatment since i am on no
medication and since i have spoken somewhat favorably about alternative
medicine. I wrote a lengthy explanation in Word Perfect, not knowing about
the encoding process and tried to send it as a attachment. No one could
read it. So I waited until after the holidays and am sending it by cut and
paste.
I am assumeing it is will be of interest to many of you, so I am sending it
to the whole group. I hope that that is not a false assumption.
MY DIAGNOSIS
The Parkinson's Institute diagnosed my problem as atypical parkinsonism,
probably one of the parkinson plus syndromes however they have not
identified it. BTW they told me that the only way to definitely diagnose
any parkinson syndrome is by an autopsy. We have decided that we do not want
that test done at this time. :-)
My principle symptoms are gait and balance problems. I have many other
symptoms common to PWP, but the walking problem is the only symptom that is
disabling. I have a problem with balance, starting, turning, narrow places,
carrying things and any goal- oriented movement. I also fall a lot.
MY TREATMENT REGIMEN
At the suggestion of the Parkinson's Institute, I tried Sinemet, Eldepryl,
Amantadine, Zoloft, Parlodel, and Permax, separately and together. These had
no effect on my symptoms. Since the PI had no suggestion to help me (except
for the diagnosis), I am left with designing my own system of treatment.
With the help of my wife and a physical therapist I have adopted the
following plan:
1. Massage. Daily for about 1/2 hr. My wife has learned to do the massage.
We are using a massage that is for the purpose of stimulating the nerves,
not the deep muscular type.
2. Exercise. We are using the exercises from the booklets by APDA and UPF +
walking practice both forward and backward and crawling both forward and
backward + some exercises in the swimming pool. The idea here is to
re-pattern my brain. If you have slow progression of atherosclerosis the
heart tries to develop other paths for the blood to try to take care of the
developing problem by doing its own "by pass surgery". We thought maybe the
brain will do something analogous, developing, in effect, other pathways for
the nerve signals. Anyway we thought it worth a shot.
3. Diet and supplements. I was raised in a family that followed a
ovo-lacto-vegetarian diet and for 10 yrs we have followed a diet with no
animal products. (My wife is a very good cook). I am now taking the
following supplements per day:
vitamin A (as beta carotene) 5000 IU
vitamin B complex 50 mg ea.
(except folic acid---400 mcg
and Biotin and vit B 12---50 mcg ea)
vitamin C 2000 mg
vitamin D 400 mg
vitamin E 400 mg
calcium 1000 mg
magnesium 400 mg
zinc 15 mg
CoQ10 60 mg
grape seed extract proanthocyanidine
antioxident 60 mg
DHEA 50 mg
ginseng 520 mg
cayenne 450 mg
ginkgo biloba 60 mg
garlic extract
4. Since walking is my main problem, I have developed several tricks to get
started.
1) I try to stop with the feet separated by about a step in the direction
of travel. When I want to get started I can usually just take off.
2) If I am in a doorway or near anything that I can grab for support, I
swing one leg with a large amplitude, backward and forward a few
times then take off when the leg is forward.
3) If I can scoot one foot forward by sliding it, then it is just like 1)
above and I can walk away.
4) If I am out in the middle of a large area and I want to start, I try
something similar. I shift my weight to one foot and try to lift the
other foot and swing slightly the other foot as in 2) above.
5) Tom Riess has pioneered the lines on the floor and other gadgets to help
PD'ers to walk. I haven't found them to be so helpful for my kind of
problem except in one case. When I approach a stop such as when approaching
an easy chair, I tend to make my steps shorter and shorter until I come to
a stop 3 or 4 feet short of my goal. I find it very helpful to put marks
on the floor where my last 2 or 3 feet placements are to be. Even if I
have had the trouble with shortening steps as described above, I can
unfailingly take the last 2 steps to the chair by large steps.
6) I find it important to think big steps, landing on the heel and rocking
to the toe, or if walking backwards landing on the toe and
rocking to the heel. Stand straight and look straight ahead. I
can sometimes take off with just following the advice in this one.
7) Sometimes it works if my wife just yells, "BIG" and then counts 1, 2, 3,
4 ---, making 1 count per step.
RESULTS SO FAR
1. I am about holding my own. Perhaps it is a case of the rate of
progression matching the rate of development of compensation.
2. Except for the walking practice and the pool experience, (which is the
brain re-patterning part) the heavy emphasis is on ROM (range of motion) in
the exercise program. I do notice that after the exercise session I am
under better control.
3. I went on DHEA for about a month then off for about a week. I then took a
blood test to see what the level of DHEA was in my blood. The result was 1.7
NG/ML. The normal is 1.4 to 12.5 . I have been on it for about a week since
then. I can notice a difference in energy, although I don't feel a
difference in control.
4. I realize that with my supplement program I may be merely creating
expensive urine but I don't care if it is not harmful to me.
---Milo
