[Part 2 of 2]
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PALLIDOTOMY
Did anyone see the article on the front page of the February 22nd Wall Street
Journal? Did you see the March 1st, twenty minute story about pallidotomy
on cable TV? It was on ABCs Prime Time Live. The New York Times also
had a story which was largely negative, but it has inspired detailed responses
challenging many of the assumptions. NBC is reportedly to do a feature on
pallidotomies at Emory University. As many believe, this publicity on
Parkinson's will only help the cause by raising public awareness and
understanding about Parkinsons.
A copy of the Wall Street Journal article has been circulated to at least one
person in every support group. Copies of the ABC item will take a bit longer
to make available.
So, in terms of both neural implants and pallidotomy (which is just a fancier
version of the brain surgery they did for Parkinsons forty years ago), the US
approach and the Canadian approach varies consistently. The US is
charging ahead and Canada are waiting and watching. In the US there
are at least 20 major medical centres where pallidotomies are now being
performed as a treatment for Parkinsons and many more surgeons are keen
to learn this technique. Most hospitals now have long waiting lists; many
private medical insurance companies pay for this procedure. Many people
are experiencing a dramatic relief from the symptoms; prior to pallidotomy,
they had only the expectations of the symptoms getting worse. Now for
many, it is like the clock has been turned back a few years.
In Canada there are four centres (2 in Ontario, 1 in Quebec and 1 in
Saskatchewan) that are doing a limited number of pallidotomies with limited
public funding and on a strictly "experimental" basis. There is only one centre
(Halifax) doing neural implants with no public funding, which could mean
that only a limited number (5) of people will get the procedure over two to
three years. Why?
It is not because Canadian patients don't want the opportunity to choose
these options! It is not because we do not have skilled surgeons who can do
the procedures! Why? Is it because everyone is being cautious? Perhaps it
is primarily to do with money!
We suspect the caution is more about spending the money than about fear of
raising peoples hopes too high. The "we don't know" stories sound, not just
like weak excuses, but dishonest ones too.
Yes, it is terrible to encourage sick people that there can be dramatic relief
from the symptoms they endure if there is no relief to be had. But it is worse
to discourage people by saying that the procedures are not "sufficiently"
proven yet, when what they mean is that the procedures have not been
"scientifically" proven yet.
They are saying it is not known exactly how long the benefits will last. They
are saying we don't know how to select the patients who have the best
chance to have improvement. They don't know because the "scientific"
research hasn't been done in the full meaning of the term "Scientific
Method". That means done several times by several doctors who maintained
detailed records and then submitted the results for "peer review" by more
doctors. When the foremost authorities says "yes, I'm convinced", a procedure
is "scientifically" proven.
The medical establishment is saying "after all, the procedures are not cures!
The treatments may only help only 25 percent of people for a few years; we
don't know". Do you hear someone quoting Shakespeare on "protesting too
much"?
Well, what is really happening is that the long time established medical
authority on Parkinsons has been "drug" treatment preoccupied. And now
that authority is being undermined by other doctors who are neurosurgery-
preoccupied. To further heat the debate: the drug industry has been working
hard and is about to bring new drugs on the market. And this new surgery,
pallidotomy, is really threatening to change the standard way of treating
Parkinsons. It is likely that the ideological battle is primarily about money
and the patient is just a pawn is this battle.
And the health insurance companies are happily saving money for as long as
the battle drags on. This is especially so here in Canada. For Nova
Scotians, it must be noted that MSI no longer covers "out-of-province"
surgery except emergency cases. Neurologists are reluctant to recommend it
because "it is too soon."
The degree of hypocrisy about the money involved at both ends of the health
care industry makes it even more difficult to get at the truth. The Canadian
system of health care delivery seems to have funds for dramatic and costly
surgery to prolong lives for what can often realistically be only a few more
days or weeks and there is more funds for round the clock nursing care
following surgery.
Is it right that our society does not count the pennies when it pays for
surgery
to keep people alive for a few more weeks, when it seems to be counting
pennies and is reluctant to pay for surgery that promises to give many people
several more years to live with an acceptable degree of dignity?
It is as if we Canadians, as a society, believe that "saving a life" is the
most
worthwhile thing that medicine can do; that we Canadians embrace the belief
that any expense is "worth it" to delay death a bit longer. It's as if we're
saying it is justifiable to play God to deny death for a few more days or
weeks, at any cost. But to authorize the spending of health dollars to save
people from months or possibly years of an unbearable and hellish quality of
life seems to be not quite worthy enough. It's as if the heroism attached to
"saving a life" has been taken to an extreme by modern medicine.
There are real answers to these questions and solutions to these problems of
course. First, are we brave enough to honestly consider the answers? If we
are, who is brave and bold enough here in Canada to ask the question?
Well, maybe it is time to think about testing what Canadians believe. We've
just talked about how we are acting in regard to choices about the spending
of health care dollars. Are the medical decisions being made about "life &
death" or "quality of life" consistent with what Canadians believe about
where their health tax dollars are most effectively spent? Let us Canadians
see if our actions are consistent with our beliefs. If not, then let's make
the
necessary changes so that the actions we Canadians support as a society
reflect what we actually do believe.
ALAN BONANDER ON THE INTERNET
And just as we are doing a final edit to the previous pages, guess what
appears Sunday, March 5th on the Internet. (We have had to condense Alan
Bonander's four pages to four paragraphs)
Alan had pallidotomy in 1993 in Sweden where Dr.Laitinen, following in his
mentors footsteps, has, for several years, been doing pallidotomy when drug
therapy fails. And drugs do fail for many people.
Alan has rapid onset Parkinsons and regular medications failed quickly for
him. He is one of the very few people who takes his Sinemet in liquid form
by infusion, which pumps it directly into his small intestine. He has been a
prime "mover and shaker" in the US to awaken the powers-that-be to the
need for more research and better treatment options. He very much
advocates that patients must become more involved to get the best level of
treatment. He is often very out-spoken; his word are often very much
needed.
About the TV article on Prime Time Live he says:
"All in all, I felt the segment was informative, high in hype and about 98%
truthful.
That is more than I can say about some reports. The jury is still out for
Ed (the
patient on the TV receiving pallidotomy) In the end he will be better off,
his wife
will get the man she married back and his sons will get their dad back...Ed
still has
progressive, degenerative Parkinsons...It will get worse...
I do not consider this surgery experimental. I use the words "cautious
optimism"...The pallidotomy has been known to last for some for as long as
eight or
nine years...and is an anecdotal reference by Dr. Lauri Laitinen. The
procedure is
not experimental and the potential outcome is not experimental. The real
questions
come from the skills of the neurosurgeon and the patient selection. The
medical
community does a disservice to themselves and to patients by stating that
this is
experimental. The insurance companies are looking for reasons to deny
benefits...In
my next letter I will discuss neurosurgeons and patient selection...I am
opinionated
about some things ... Please feel free to express yours by inking the pen.
The worst
we can be is wrong. In the meantime hopefully some truth will come out."
MORE ON PALLIDOTOMY
The final comment (for this Newsletter) on pallidotomy is this: Many in the
scientific medical research community want to see proper "scientific method"
followed to the 'T' before they willingly give their nod of approval on
pallidotomy.
And it is true, the patient community would be very wise to ask more
questions before he\she believes all the hype about this procedure. What kind
of questions? Well, try to establish the ideological bias of the person giving
you advice whether they are talking for or against it. Then you should ask
someone who's view reflects the other bias. If you are still confused, maybe
do what a smart business person does - ask for a list of previous customers.
Well "patient confidentiality" prevents most doctors from helping on this; but
there are other avenues to find people with whom you can compare notes. It
is better to ask too many questions than not enough.
But remember, a lot of the noise we hear is the cracking and crumbling of the
marble pillars.
Thinking about all of this and about what is true or false or who is right and
who is wrong, suggests that there may be sound cause to consider this
statement by Dr. Gary Heit, a neurosurgeon who is doing Parkinsons
research at Stanford University : "I think Parkinsons is a cluster of
diseases with known similarities. The differences are the unknowns.
Why does one patient have dyskinesia while another is bothered by
dystonia? Support groups are an important part of learning to live with
Parkinsons and of understanding these differences."
EDITOR'S OPINION
Isn't it becoming obvious that better treatments, and probably even the cure,
will be found sooner when more people with Parkinsons are involved in
research as an active researcher and not just as a laboratory animal?.
MORE ON THE INTERNET
There is so much discussion and we want to share some of it with you. Some
of you will be quite interested and may have a desire to tune in. This new
technology will do for our day and age what the newspaper did for ordinary
people 200 years ago - tell them what is happening at the human level in
areas of special interest to them.
The messages are not mediated; they come from the people involved. On
your computer screen, you can look at the general information displayed in
every List (topic compartment) in the huge Internet. For any that you are
interested in, you can sign onto; then you can participate in the discussion.
Most participants are interested persons like yourself who have interesting
things to ask or to tell; some will be specialists who want to provide
answers.
When the "answers" are not agreed upon, the conversation gets interesting.
Anyone who wants can have their say; everyone can decide for themselves
what is valid for them.
Virtually everything is talked about on the 'net. There is an avenue for the
instant and private exchange of written information between two parties.
Also there is an avenue for everyone registered to receive, each day, the "to
all" messages. The sender chooses who will get his\her message: a select one
or two persons or more, or everyone on the Parkinson List.
For those who have no basis to imagine what this Internet is like, let me
compare this new means of sending messages with the old one. It is like a
great big post office that can serve people anywhere in the World. To pick-up
information at the Internet you need a computer with a modem; a modem is a
telephone that computers use. You don't have to go there with a key in your
hand, your computer just receives the messages sent to you.
Think about it this way. Internet has many different Lists and each List
deals with information on a specific topic. For every topic (e.g.: the
Parkinsons List) there is a box where every computer that is connected to
Internet can, anytime, phone in to pick up a copy of the letters posted "to
all"
on the List, or to send a letter to someone or to everyone on the List.
Also, there is a means to look at the file of letters that have been posted
over
the previous days and weeks. The messages come up on your computer
screen and/or you can print each message.
For those messages that are coded to be sent to just one person, the sender
designates a specific computer address and only that computer can pick-up
the letter. That's one part of the 'net in a nut-shell!
But there is also the World Wide Web or WWW. As with email and mailing
lists, all you need is a computer, a modem and a connection. This is as good
a place as any to say a word about connection. If you have a local Internet
access provider, either a commercial one where you pay a monthly fee for the
connection, or a freenet where you can register as a user and obtain some
Internet access, then you can connect. In Nova Scotia, NSTN is the first
and the largest Internet provider with "points of presence" in Amherst,
Antigonish, Bridgewater, Halifax, Middleton, Sydney, Truro, Wolfville and
Yarmouth. NSTN also provides access in Moncton, New Brunswick. There
are other Internet access providers in the region. As well, Nova Scotia now
has three freenets in Halifax (Chebucto FreeNet), Sydney and Yarmouth.
The main point to make is that after you are connected (for a fee with a
commercial provider or for a modest registration fee with a freenet) there are
no long distance charges. You can roam the world with no additional costs.
In the near future, our Nova Scotia Division will have its own Home Page
on the Chebucto FreeNet. Right now, a test version of this is available
through Peter Kidd's Home Page on Chebucto. If you want to take a look,
there are two ways of doing it.
1. Direct contact through WWW. The URL is:
http://www.cfn.cs.dal.ca/~aa163/peterkidd.html
2. Log into Chebucto FreeNet (902) 494-8006; sign in as "guest"; enter
# 2 of the CFN Main Menu and look for the "go people" entry; in the
space of the form type in "kidd" and you should get Peter Kidd's
Home Page.
Within a few weeks, the Nova Scotia Division Parkinson Home Page will be
lodged in the health section of the Chebucto FreeNet. Watch for it.
As well, there will be an international World Wide Web (WWW) site on the
'net' very soon. It is being spear-headed by Ken Bernstein of Boston, More
on these developments in the next Newsletter.
UPDATE ON THE FETAL NEURAL TRANSPLANT PHASE II
In December the Victoria General Hospital announced its intention to
launch Phase II of the Fetal Neural Transplant research. While there is no
further public information about the patient selection process or the timing of
the transplants, this is currently under way. The Nova Scotia Division has
agreed to assist the research by whatever means it can. A working
relationship involving regular bimonthly meetings between the Division and
the Project Team Leader, Dr. Ivar Mendez, has been established.
It is clear from the initial discussion that the Neural Transplant Project will
require substantial financial assistance from a wide variety of sources
ranging from the national medical funding agencies, continuing support from
the Parkinson Foundation of Canada (which assisted Phase I through
significant research grants), regional and provincial foundations and
individual contributions. The Nova Scotia Division is assessing how it may
be able to assist.
It is believed that research results from Phase I will be published this
summer.
Future Newsletters will feature a regular update on this important research
project.
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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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