STROKENET Newsletter
February 1, 2002                              Vol 2 Issue #2
  Linda Wisman, Editor,
  mailto:LWisman@strokenetwork.org

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By subscription only! Welcome to your next issue of STROKENET".
You are receiving this newsletter because you requested a
subscription or are on the Stroke Newsletter list. Unsubscribe
instructions are at the end of this newsletter.

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 IN THIS ISSUE
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 => Sponsorship Notice
 => Organization Highlights
 => Editor's Message
 => Stroke in New Zealand
 => Recovery Comes in Stages
 => Product Review: Abike
 => Book Review: Merry Go Sorry
 => Website Review: http://neurosurgery.mgh.harvard.edu/paral-r.htm
 => Experimental Procedure: Rhyzotomy
 => Invitation: Caregiver Study
 => Subscribe/Unsubscribe information

If you would like to be a sponsor of this newsletter, please
contact me: mailto:LWisman@strokenetwork.org

Website Addresses:
http://www.strokesupport.org/ for stroke survivors
http://www.strokecaregiver.org/ for stroke caregivers
http://www.strokezine.org/ for information about stroke and
this monthly newsletter
http://www.strokeawareness.org/ for stroke awareness content.

All can be accessed from our homepage, http://www.strokenetwork.org/.

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Organization Highlights, by Steve Mallory
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Well, another monthly newsletter is here and I feel like I
have nothing that really matters to update you on about our
non-profit status. The fact is that it just takes time. I'm
not worried because I know that the application has been
submitted.

In the meantime, we are steadily working to improve things
in the organization. I don't really want to get into the
specifics yet, because the details aren't all worked out.
I can tell you that support is the number 1 priority around
here and this area is getting some much-needed help. Julianne
Marken, our Vice President of Support Operations is working
very hard to make this all come together. On the other front,
we have been able to identify several key improvements for
this newsletter. Lin Wisman has been working extremely hard
to put the changes into effect and hopefully you will see
some of those in this month's newsletter.

Frank Ruby has joined our staff and will be coordinating
monthly birthday acknowledgments. In addition, Peggy Polzynski
will be heading up an organization project to collect recipes
from our members. We will be highlighting the diabetic ones.
It should be neat to get recipes from all over the world.
Thanks to these new additions to our staff. We have a lot
more volunteer staff positions that are still open. E-mail Pat
Provost at PProvost@strokenetwork.org if you are interested
in volunteering.

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Editor's Message, by Lin Wisman
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Welcome to the February issue of StrokeNet Newsletter. I hope
there is helpful information for you in this addition. We have
provided webpage links to our product and book reviews. Soon
there will be a library of product and book reviews on our
website. This will facilitate finding information at a later
date.

We welcome a new contributor this month, Michael Roberts. He
has written a review of his recumbent bike. The book review
this month covers the book "Merry-Go-Sorry" by reader Richard
Cuddihy.

In addition to these reviews, David Ray resumes his writings
on "Stroke in New Zealand." Enjoy Rhonda Peterson's "Recovery
Comes in Stages" where she shares with us her reflections 10
years after her stroke. Barbara Layne reviews another helpful
website for us. Fr. Chris Anthonias shares his experience of
trying an experimental procedure. Finally, if you happen to be
a caregiver you are invited to participate in a survey - see
the information in the last article.

This month we received a note from one of our readers regarding
the book review. He lives in South Africa and needed more
information on how to locate the book. We are happy to report
that his local library has ordered it. The book will be made
available not only for our reader, but for others interested.
We have included information about the publisher of this
month's book.

Rhonda Peterson is featured in the January/February issue of
Stroke Smart Magazine. To view the article, click this link:
http://www.strokenetwork.org/newsletter/0201/rpeterson.htm

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Stroke in New Zealand, by David G. Ray
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Since this is my first contribution for this New Year may I
begin by wishing all readers a very happy and healthy 2002.
The Lower Hutt Stroke Club finished its programme for 2001
with the annual Christmas Dinner. This was an informal
gathering at a local Working Men's Club. Most members came
including a number who otherwise find it difficult to come
to our usual meetings. It was great to see everyone enjoying
themselves. As usual everyone was encouraged to bring a small
gift, which were combined into Christmas parcels and were
raffled off. The meal was excellent, the company enjoyable
and the whole gathering saw our members leave in high spirits.

The weather in New Zealand has been anything but summery
with rain, strong winds and cool temperatures for the first
few weeks of summer. We even had a warming fire at one stage.
This was in contrast with our Australian friends who have had
to live through tremendous bush fires, which have burnt down
houses and huge tracts of bush. The area about the Blue
Mountains, west of Sydney, was particularly affected. Back to
New Zealand the last couple of weeks have been very hot. Our
home is by a good swimming beach, which we have used and
enjoyed to the full.

Whereas northern hemisphere countries such as Europe, America
and Asia have had a traditional Christmas Dinner of roast
turkey and similar fare, our family had what we call a cold
meal for Christmas Dinner. It is just too hot to have roast
fowl with all the trimmings. Except perhaps for roast
potatoes our Christmas Dinner consists of cold ham, turkey
with various salads and cold sauces. For sweets we had trifle,
fruit salad and ice cream. All this was washed down with beer
or wine. Naturally we were ready to have a sleep afterwards.
Why do we eat so much at Christmas?

Many people in this country have their holidays at this time
of the year. The holidays are spent at beaches, lakes or
rivers much the way people all over the world spend their
vacations. My wife and I already live by a safe beach in
Wellington Harbour, which is very popular with people who
live in the area. However as I type this school has begun
for the new year for which the children are excited and the
parents are grateful.

We are now working on the Stroke Club programme for the first
6 months of this year. As usual it is a mixture of
entertainment, medical type sessions which relate to stroke,
and trips of interest about the Wellington district such as
gardens, animal parks etc. Like the school children who are
eager to return to school, many of our members are just as
keen to begin the stroke programme. We hope that the
programme we have prepared will stimulate and educate our
members.

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Recovery Comes in Stages, by Rhonda Petersen
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Recovery comes in stages. Elisabeth Kubler Ross explains that
recovery takes the form of denial, anger, negotiation,
resignation, and finally acceptance. Many people who have a
stroke deny the symptoms. There could be two reasons for this
situation. First, the brain is not functioning properly. It
does not consciously reason that there may be something amiss.
Secondly, some strokes do not usually cause pain. Learn the
warning signs of stroke.

It is natural to feel anger when stroke permanently affects
our lives. We barter, negotiate, and bargain with medical
personnel, our Higher Power, and ourselves. At this point,
we question "why me?" In time, all of us must learn to accept
and come to terms with our new lives.

These stages may be transient in nature. Hope is very important.
It takes time for us to learn new skills. Time can be our
enemy or our friend.

It is also extremely important to be aware of the symptoms of
stroke and inform loved ones of your wishes should one occur.
But, do not forget to live in the process. We can get so
wrapped up in the medical aspects of stroke that we tend to
forget that eventually we must lead our lives unfettered from
continuous medical personnel. This can be frightening as
reality sets in and we attempt to return to our daily tasks
without the support of therapy.

The stroke has changed and limited some of our activities.
In some ways, it has affected who we are and how we think and
process information.

However, negativity breeds depression. There was so much
negativity in my life that I had to depend on a sense of
humor to survive it all. I have adopted a "been there, done
that" attitude. As long as I have life, I will use every
opportunity to learn and grow from my experiences. I am not
a victim or a survivor. I am so much more than the stroke.

I had two strokes followed by heart surgery at the age of
forty-two but I am fortunate to live in an age of technology.
Computers afford worldwide access to information. Advances
in stroke research are moving forward. New medications are
available. Recovery is possible.

I accept the person I have grown to become.

Recovery comes in stages so when you meet the challenges
of a particular act don't forget to take a bow

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Product Review: Abike, by Michael Roberts
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To see Michael's review of his recumbent bike click
http://www.strokenetwork.org/newsletter/products/abike.htm

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Book Review: Merry Go Sorry, by Lin Wisman
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To see the review, click
http://www.strokenetwork.org/newsletter/books/cuddihy.htm

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Web Site Review, by Barbara Layne
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Everyone knows that there is so much information on the
internet . We went online as soon as we were able to check
about stroke - that's how we found each other! This month I
have decided to point to a section of the Harvard Medical-
Massachusetts General site, which deals with support
organizations. It contains links for people who need
information on spinal cord injury, stroke, and paralysis:

http://neurosurgery.mgh.harvard.edu/paral-r.htm

Along with the actual websites for these organizations, there
are links to three major sites at Massachusetts General:

MGH Developmental Neurosurgery homepage - additional
information about pediatric neurological disorders.

MGH Spine Surgery Homepage - information on spine surgery
And rehabilitation resources

MGH Neurovascular Surgery Homepage - information on prevention
and rehabilitation of stroke

In each of the links, there are resources to contact online
and publications which are relevant to specific needs and
concerns.

Just when you think you might be an expert, you find something
else that you didn't know!

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Experimental Procedure: Rhyzotomy, by Fr. Chris Anthonias
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Note: Fr. Chris Anthonias recently sent us the following
information concerning a procedure he underwent. We thought it
would be of interest to our readers to learn about someone's
experience with an experimental course of action.


I had read about a procedure called a "Rhyzotomy" on the web.
The article said it was for Tone / Spasticity and that it was
a last resort since it was not reversible. I approached a
Neurosurgeon who is on staff at University of California San
Diego and asked if he would be willing to perform the operation
for my left arm and hand. The hand had become a closed claw
and the shoulder was sublimating. I was informed that he had
done hundreds of "Dorsal Rhyzotomy", while serving his internship
at the Chicago Pain Institute, for MS patients with the same
trouble in their legs. He had never heard of a Cervical
Rhyzotomy to treat the upper extremities. He told me he would
check with his coworkers on staff at UCSD.

The Neurological department at UCSD told him they would NOT
do the procedure and advised him to implant a Baclofen pump.
When I explained that one Baclofen pill made me vomit
constantly for 5 hours he said "I am not willing to implant
a pump that will send a medicine, that you so obviously can't
tolerate, into your spine that goes directly to the brain.
The nausea controls are in the brain not the stomach."

After calling around the world he found that the procedure
had been done on 5 other people ONLY and in other countries.
He said that my idea was brilliant, that it made total sense
to him and he was willing to perform the surgery if I was
willing to take the chance. I could develop chronic pain.
He would treat the pain by implanting electrodes in my brain.
There was also the possibility of "Swan neck" where my neck
would no longer be able to support the weight of my head.
In that case he would have to remove part of the vertebrae
in my neck "Partial Lamanectomy." He was not willing to fuse
it since I am over 40 and a smoker. The chances of fussion
healing was only 50/50. I agreed to all of his cautions and
was scheduled for the surgery October 1

The Neurosurgeon warned that the pain would be the worst I
had ever felt. I would be on three narcotic pain medications
for 6 weeks. He removed part of the Lamina (vertebrae) from C1
through C7 and T1 and cut every other nerve roots at the
spine that connect the brain to the effected arm / hand. Once
I awoke in the post op ward I wished I could die. The pain
was so intense that all I could do was cry and request morphine
every 2 hours. Now, about 10 weeks later, I am gradually
regaining use of my arm and hand. Also, the central pain
symptoms (hand feeling like it was in boiling water and pins
and needles) I had prior to the surgery are now gone! That
alone made the surgery worthwhile.

I currently attend Neurological PT 2 times a week. I will
continue PT for up to a year to teach the brain how to talk to
the arm and hand. I can now move my wrist from almost a 45
degree bend outwards (it's normal position since stroke) to
straight forward simply by looking at the hand and consciously
telling it to move. I can also now hold things in the stroke
effected hand. Also there is no longer any shaking or trembling
in the stroke effected arm / hand.

I was also fortunate that ALL pain was gone by week 3 rather
then lasting 6 weeks. I am in the process of being removed
from my Soma medication, which I have been taking for 3 ½
years. Removal must be gradual since it is a very addictive
muscle relaxant. After I am off of that medication I will
begin removal of my Zaneflex medication. I take 8 a day.
The fact that I no longer sleep 16 out of 24 hours makes
the surgery worthwhile.

Anyway it is DRASTIC and not to be taken lightly. My
Neurosurgeon took video tape of the before and after of my
arm / hand and my walking. He will be writing a paper on
the procedure and how I have reacted. I have been told that
I will have a direct role as a result of my surgery on how
stroke is treated in the future. Currently there is NOTHING
about the procedure on any web page OR in any medical
journal.

Update. Fr Chris would like to report that since he wrote
this article his walking has also improved!

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Caregiver Study
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Hello Caregivers -
My name is Jan Colvin, and I am a doctoral student at Texas
Woman's University in Denton, Texas. As part of the requirement
for the degree, I am conducting a research project to
investigate the experiences of caregivers that are using
online social support networks. I am interested in learning
more about how caregivers give and receive social support
using the Internet. Upon completion of the study, I plan
to submit articles to professional journals with the hope
of impacting programs and policies that support caregivers.

You are invited to become an anonymous participant in the
Research study. Absolutely no identifying information, such as
web address or routing numbers, will be transmitted when an
individual submits a completed survey. The survey will take
approximately 30 to 45 minutes.

If you meet these criteria, please click below to find out more
About the study:

   a) You are over 18 years of age.
   b) You are providing help with personal care, household chores,
      transportation, finances, etc. for someone 50 years of age or
      older who lives at home, not in a residential care facility.
   c) You are performing care-giving activities for at least 10 hours
      each week.
   d) You are engaging in online social support networks.

Click below to find out more about the survey.
http://www.twu.edu/cope/famsci/colvinsurvey/default.htm

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Copyright Information
This newsletter is the copyright of the Stroke Network and may
not be copied without the express written permission of the
Network. Contact, Steve Mallory, mailto:SMallory@strokenetwork.org

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Copyright 2002 The Stroke Network
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 Steve Mallory
 President & CEO
 The Stroke Network
 mailto:SMallory@strokenetwork.org

 Stroke Awareness for Everyone