To list members:
 
The Nova Scotia Division of the Parkinson Foundation of Canada produces a
regular Newsletter primarily aimed at Parkinsonians and their families in
this province. The current Newsletter, however, contains an extensive
summary on many issues currently under active discuion on the list. It was
prepared because not many of our members have access, as yet, to the Internet.
 
We thought others might find it useful as well. There is also a brief update
on the trial fetal transplant program at the Victoria General Hospital in
Halifax. We will try to pass on regular updates from time to time on this
line of surgical  research.
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From the Newsletter, Nova Scotia Division, Parkinson Foundation, Vol. 7,
Number 2, March-April, 1995
 
NEWS "ON-LINE": A NOVA SCOTIA PERSPECTIVE
 
by Elaine Peers and Moira MacPherson
 
There are so many interesting things happening in the world of Parkinsons
that we don't know for sure where to start.  With all the mass media
coverage, everyone is interested in the inside story on "pallidotomy"; so we'll
update you on that.  Of course most everyone in the Maritimes has heard
that another three years of studying the technology of implanting neural
tissues into the brain has begun again at the Victoria General Hospital.  Dr.
Mendez is the newly arrived neurosurgeon who will lead the "transplant
team".  He has studied fetal tissues implanting (as well as pallidotomy) in
Sweden with the surgical teams which are leading the World in both of these
surgical techniques.
 
Speaking of the World - The Internet is proving to be an advanced
communications network that allows for a "grassroots" kind of information
exchange.  Of course the mass media is publicizing the "bad" things about it,
but as in all things, there are people who will use anything for their evil
purposes.  For the rest of the people, Internet allows the instant sharing of
information.  The conversation about Parkinsons on this World-wide
computer network is fantastic.
 
OTHER SOURCES OF INFO
 
It is not just the information on the Internet that we want to share with you.
Our long standing sources - newsletters from other Parkinsons organizations
- have lots of interesting articles too.  Particularly interesting are
several in
the most recent copy of Movers and Shakers.  That is the newsletter
published by the Young Parkinson's Support Network of California.  We will
pare the articles to the essential details since we are trying to cram 30 pages
of information onto seven.  Tight squeeze!  Anyone wanting the complete
article can call on the toll-free 1-800-663-2468.
 
We are suggesting again that Chapters could and should subscribe to one of
these other newsletters and then find someone who can report on the
contents at each Chapter meeting.  To add to this, there is good reason to
hope that our national newsletter NETWORK will soon carry much more
information on research.
It is fascinating to read what people with Parkinsons are doing, on their own,
that is contributing to the body of information about Parkinsons and
providing more and more clues.  Eventually it will all lead to the discovery of
the cause and a cure.
 
A CASE IN POINT
 
Blue-tinted sun glasses  About a year ago we heard that blue-tinted
sunglasses somehow helped some people cope better with some of the
symptoms of Parkinsons.  We couldn't get any specific information; now
finally here is more about that idea.  It is not from a research lab but
from an
in-depth study done by Tom Riess who has Parkinsons, but who also knows
about light and colour and how eyes see.
 
FREEZING/DYSKINESIA & EYESIGHT
 
It has been known (but not how or why) that Parkinsons causes an
abnormality in vision which is suspected to be involved in the phenomenon of
freezing.  Now there is data which suggests that a vision problem is involved
in dyskinesia too.
 
Based on his own experiences and personal observations, Tom suspects that
there is a medication related ever changing level of impairment in the
perception of motion or in the processing of information about motion.  It
could even be both, because it is known that the changing nature of the
abnormality is related to the levels of dopamine in the brain and/or in the
retina of the eye.  The retina is known to be rich in neurons that need
dopamine to function. And many message transmission neural centres are
adversely affected by too much and then too little dopamine.
 
Tom says that if dopamine levels are low (as when OFF) there is a decrease
in the ability to notice changes in motion.  Another writer (Alan Bonander)
mentions his tendency to gently bump the car in front when in a slow-moving
traffic line-up! He can't tell if his car and/or the one ahead has stopped
or is
still slowly rolling forward.
 
Tom also reports that when dopamine levels are too high there is a
hypersensitivity to motion.   This can often cause motion sickness, especially
if dyskinesia is present.
When dyskinesia starts, objects close by appear to be moving.  This is an
illusion caused by one's head rocking & twitching about.  The brain is in a
state of being hyper-alert and when the eyes see these fast moving objects, or
their arm or leg abnormally jerking about, the dyskinesia tends to get worse.
It is believed to trigger an autonomic response that makes the dyskinesia
worse.
 
When dopamine levels are dropping and a person is turning OFF, it is
possible that there is insufficient dopamine in the retina to process
information about one's surrounding.  It is as if there is an automatic shut-
down in walking because the brain is not getting the information it needs to
keep the body safe.
 
The blue-sunglasses theory:  Because it is the peripheral vision that picks-up
motion, focusing on a distant object or blocking one's peripheral vision can
help some people reduce their dyskinesia.  In an effort to block his peripheral
vision, Tom tried different coloured lenses.  He has found that blue lenses
tend to help him block his hyper-sensitivity to the apparent motion of nearby
objects - which is really caused by his state of being slightly over-medicated
and dyskinetic.  The blue lenses block his perception of the abnormal motion
and this makes the dyskinesia easier to control.
 
Some people report that motion sickness can be prevented.  He believes that
blue lenses  facilitates "the suppression of autonomic (tension-anxiety)
induced dyskinesia".
 
DRIVING PROBLEMS IDENTIFIED
 
Tom cautions about driving with blue lenses because they can prevent you
from seeing red-lights.  Some people are now trying lenses that are clear in
the centre but blue around the out-side edges.  They get the same benefits -
less dyskinesia; and have fewer side effects - they can see red lights.
 
Alan also reports another caution: he now experiences an almost undeniable
need to nod off to sleep at a point when his medication moves him from an
OFF to an ON state.  Many people report this tendency.  It is believed to be
related to the "sleep deprivation" that becomes a part of advancing
Parkinsons and also to the fact that at some point the body must sleep... So
finally, when the medication releases the tension in the muscles, the body
falls asleep, whether it is convenient or not.
 
If you are driving when this switch from OFF to ON happens, you could
easily fall asleep at the wheel!  So be wary; think about Alan's experience
and compare it with yours.  Many people are inclined to nap in the
afternoons; is this why?   -   There is more information on driving; please
phone for it if you want a copy.
 
RESTLESS LEG SYNDROME (RLS)
 
Some people with Parkinsons also experience something called "restless leg
syndrome"; but many other people have this problem who do not have
Parkinsons.
 
Here are three descriptions of the main symptom:  "it feels like bugs crawling
up and down my legs" or "it's like my legs have a life of their own" or "it's a
creepy-crawly sensation like a thousand tiny worms working their way
through my leg muscles".  Others report a strange numbness, tingling, pins
and needles or shocks or rhythmic spasms in the legs. Doctors call these
sensations "paraesthesia".
 
RLS causes periodic limb movements during sleep - leg muscle twitches that
occur every 20 to 40 seconds which force you to get up and walk around to
get some relief.  These sensations are not just leg-cramps or full-body jolts
that startle you awake.  Reports are that if RLS is severe, the anti-parkinson
medications Sinemet CR, Permax or Parlodel may provide some relief; but if
symptoms are mild, drugs like Tylenol with codeine or a central nervous
system depressant may be sufficient.
There is not much information available to guide in the treatment of
combined RLS and Parkinsons; it may take working on a trial and error
basis with your doctor to find a treatment that provides good relief.
 
RLS can lead one to consider a similar symptom known as "akathisia" which
is "an inner sense of restlessness with the inability to sit still".  This
has been
described most often by people who are taking certain antipsychotic
medications to reduce the amounts of active dopamine in the brain.  Those
medications, it is now known, can over time cause "drug induced"
Parkinsons.
 
Some people with "idiopathic" (cause unknown) Parkinsons also report this
same sense of restlessness.  Is there a logical relationship here that begs the
familiar question:  Are these kinds of sensations a symptom of Parkinsons or
side effects of medication?
Here are two illnesses, one with too much dopamine and one with too little,
and here identified is a symptom of one condition that is a side effect of the
medication used to treat the other.  Is there a relationship or is it a
coincidence?  We guess we'd better beg a neuropharmachologist to ponder
that question.
 
ACTION TAKEN SOUTH OF THE BORDER
 
Speaking of differences -- noting the differences between Canadians and
Americans is one of our great national pass-times.  We consider ourselves
cautious and relatively passive while we consider our southern cousins to be
almost reckless and aggressive.  From a Parkinsons point of view, let's look
at what Parkinson groups south of the border are doing.
 
In the US in 1988 President Reagan endorsed a ban on the use of federal
tax dollars for medical research (for Parkinsons) that involved the use of
tissues taken from aborted fetuses.  By 1991, an effective lobby group had
formed nationally, to promote the Parkinsons cause and get the ban lifted.
When President Clinton took office, the ban was canceled very quickly.
And a few months later the US federal organization that funds medical
research, the National Institute of Health, awarded $4.5 million to three
large research teams to jointly study the procedure and the results of fetal
neural tissue implants.  The intent is to prove or disprove the
effectiveness of
implanted neural dopaminergic cells as a treatment for Parkinsons.
 
Also being considered this year is a Bill (in honour of Senator Udall who has
Parkinsons) that should force the US to take a good look at how little is
being done to find better treatments and the cure.  After all, Parkinsons
affects 1.5 million people in the US and it is not an insignificant or rare
medical problem.  In fact, 1.5 million represents more people than all who
have Muscular Dystrophy, Multiple Sclerosis and ALS combined!
 
If this Bill for Parkinsons is passed into Law, it will provide more federal
money for Parkinsons research and for badly needed support services.  The
publicity will greatly increase public awareness which should also increase
private funding.  Things are improving for many people with Parkinsons
in the US.  Let's hope this will spill over to us.
 
Because:  In 1988, in Canada it only took a few words from Jake Epp,
then Minister of Health, to effectively impose a ban on federal funding
which is still in effect.  He simply stated that while he was the Minister of
Health, no public funds would be directed toward medical research that used
tissues taken from aborted fetuses.  When that Minister of Health moved
onto another portfolio, his personal promise was honoured by his
Conservative successors.
 
And now even with the change of political power in Ottawa, the new
Liberal government is still keeping Mr. Epp's promise.  The Medical
Research Council of Canada continues to refuse to consider funding fetal
tissue transplant research for Parkinsons because there has been no further
directive since 1988.  Why?
 
Opinion polls indicate that close to 75 percent of the Canadian public believe
that the research should continue.  Why aren't we Canadians trying to do
something?  Could we be pretending to be cautious when we actually are
feeling powerless?  Are we afraid to "fight city hall"?
 
If we are not afraid, then maybe all we need to do is to get organized and try,
because there is something we can do.   It is called advocacy or "lobbying"
and includes letter writing and phone calls to your MP, sending letters to the
editor of your local paper, getting friends and family to write letters too,
or to
at least also sign the letters you write.  Can we wait for a spill-over
effect to
come to us from the US?  For those who are desperate for relief from the
symptoms and side effects, it is hard to think about waiting another two,
three maybe four or five years to get the treatment that is making front page
and prime-time new headlines.
 
[continued in part 2]
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Peter J. Kidd
Learning Materials Consulting Services
Phone & Fax: (902) 443-4262
Email: [log in to unmask] & [log in to unmask]
 
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