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STROKENET Newsletter
November 1, 2001 Issue #11
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
=> Interview with Christine Dudley-Daniels
=> Wacky Weatherization
=> Website Review: www.nlm.nih.gov
=> Subscribe/Unsubscribe information
If you would like to be a sponsor of this newsletter, please
contact me: mailto:LWisman@strokenetwork.org
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Organization Highlights, by Steve Mallory
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If you haven’t been to our web site lately, you have to go.
The redesign turned out better than I expected. In my opinion,
the site is now simple to navigate through and find anything
you are looking for. We have lots of room for improvement
but it’s easier than easy the way it is right now.
Your best bet for finding things is to click on the link of the
Table of Contents. Since we have five web sites that make up
our Stroke Network there are 5 detailed Table of Contents. In
addition to those navigation pages, we have full search
capabilities for each site plus a site map.
Please spend time in our Members Zone submitting your stroke
bio plus e-mail me your picture and I’ll post in our Gallery
so that all your cyberfreinds can see who you are.
These are just a very few of the features of our web site. It
looks about as professional as you can get and I’ve done just
about everything humanly possible for visitors to find what
they want. That brings up the subject of filing for non-profit
status. The Stroke Network officially became incorporated on
September 4. I filed for our federal identification number last
week so now it’s just a matter of sitting back and waiting for
approval. I’ll keep everybody posted on the status.
In the meantime, we are heavily into the process of building
the infrastructure of the organization. We are concentrating
on getting the financial structure setup. We are holding weekly
meetings to get this accomplished. We are also busy filling
positions for our staff. You really need to visit the web site
and look for the Volunteer web page in order to see what the
staff structure looks like. If you are interested in
volunteering for any position, whether you can put in 1 or
20 hours per week, we are finding positions for everybody.
We know that we have a lot of experience in our membership
with many who cannot get up and go to work anymore. Why not
make yourself feel productive again and do something that will
benefit the organization? If you are interested, please e-mail
our Personnel Director, Pat Provost at PProvost@strokenetwork.org.
I have a few staff announcements to make. Unfortunately, Sheri
Pherigo had to resign as Vice President of Support. She has been
replaced by Julianne (Jay) Marken. Several of you probably know
her from chat or the message boards. Jay is an experienced
Respiratory Therapist and brings a wealth of healthcare
knowledge. Other new volunteers are Kristi O’Donnell as our
Chief Financial Officer, Pamela Reeder as the Finance
Committee Chair, Lisa Miskutis as Public Relations Officer
and her husband, Mark, is now our Expert RN, you can e-mail
him if you have questions about nursing care.
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Editor’s Message, by Lin Wisman
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Welcome to the November issue of StrokeNet. It seems that
with Halloween just past, we are already in the holiday season.
It seems to start earlier every year.
This month there are several articles of interest. You may have
already read the lead article -- Steve Mallory’s organization
update. As he suggests, be sure to visit the web pages. David
Ray continues his saga of Stroke in New Zealand. Next there is
An interview with Christine Dudley-Daniels about her book
“Testimony of Faith.” Rhonda Petersen contributes a humorous
article concerning her experiences with home winterizing.
Finally, Barbara Layne reviews another website.
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STROKE IN NEW ZEALAND by David G Ray
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I am coming to the conclusion that this monthly column that
I produce is more of a personal letter rather than writing
about Stroke in New Zealand. However although it is largely
about my life and how I cope with having had a stroke, it
does reflect in some small measure how fellow sufferers
live here.
In late September New Zealand had Stroke Week. Stroke Week
gives us an opportunity to publicize our illness and gives
the opportunity to the general public to learn about stroke
and how we, as survivors, cope with day to day life. We also
ask for donations to continue the work of the New Zealand
Foundation. I found that people are interested in stroke,
its cause and how stroke survivors are rehabilitated. This is
understandable because stroke is the third most cause of
death in New Zealand, after heart attack and cancer.
This month also we had a very interesting talk and
demonstration of one-handed techniques for use by stroke
survivors about the home. This demonstration was given by two
physiotherapists from the Hutt Hospital. It is amazing the
number of devices available to stroke survivors, who like
myself, have lost the normal use of one arm. Later in the
month we visited the Cricket Museum in Wellington – a
display of cricket memorabilia from the past and the
present. It was a most interesting display of items from
our summer game.
On a more personal note, the months of September and October
are the whitebait-catching season. These very small fish
are a real delicacy here and command high prices in the
shops. My wife and I travel over 100 kilometers to net
these little fish and sometimes it is a very frustrating
journey, as a fruitful catch cannot be guaranteed. The
drive involves traveling over the Rimutakas, a pass over
the Tararua Ranges into the Wairarapa section in New
Zealand. We leave home at about 3am in order to set our
nets in a coastal river at daybreak. To get to the river
I have to clamber down a 20-foot bank together with my net
and screens. The screens are necessary to steer the whitebait
into the net. As a stroke victim this is a great exercise to
get my muscles active. Naturally I have to clamber back up
again hopefully with a substantial catch. We go there during
the weekend, as the site is usually crowded during the week.
However we do meet new friends, all with the same objective –
to catch whitebait. We cook them by mixing them with a little
flour and eggs, shaping them into patties, and lightly frying
them in oil - delicious.
It is spring in New Zealand and we are enjoying colourful
gardens with wonderful displays of spring flowers and shrubs.
Every year at this time there is a very colourful display of
tulips in the Wellington Botanical Gardens. When we lived in
Brussels in Belgium, each spring we used to drive to
Kugenhoff in Holland to see the wonderful display of tulips.
This is an event not to be missed if you are in that part of
Europe - words cannot describe the beautiful layout and
colours of the tremendous garden.
I conclude by wishing all readers, especially those in the
USA, best wishes for a peaceful future life - kia ora.
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Interview with Christine Dudley-Daniels, by Lin Wisman
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In Christine Dudley-Daniel's book "Testimony of Faith" she
documents her experience as the primary caretaker for her
husband following his stroke. She captures the experience
well -- being thrown into a new world that she was not
expecting, learning to deal with the medical establishment,
learning to deal with her husband's new condition. Throughout
the book the threads of love and faith are accented. I posed
a series of questions to the author. Her responses are listed
below.
Q.: What was your situation with stroke?
A.: My husband's stroke situation was not one, which was
familiar to me. It was frightening to say the least as it
affected his memory and he still suffers from dementia. Even
though he does not have physical impairment, he suffers with
pain, lung congestion and other side affects. My husband was
a strong and healthy man, so this has been a slow five year
process which has affected everyone in our family.
Q.:. Why did you write this book?
A.: As I looked back over the daily challenges of this
illness, I recognized I needed to tell my story for others
who may be feeling as I did: fearful, angry, hurt, bewildered,
yet knowing that I had to be strong so that he would continue
to fight for day to day progress. I want caregivers to know
what they are feeling is ok and that they must not give up,
they must believe deep down in their souls that it will be ok.
Q.: What obstacles did you face with writing this book?
A.: First it was the first book I ever wrote, so clearly I
did not know where to begin. I had documented my husband's
illness so I had the facts, I just did not know where to
begin or if anyone would really be interested. After
contacting various publishers and attending workshops, I
learned this was going to be an expensive venture which would
become the biggest obstacle. Unless you have a "name" or are
a known writer, it is not easy finding help in getting
something published.
Q.: What are your three best pieces of advice for caregivers?
A.: a. Often as a caregiver we deny ourselves food, sleep
etc. You must be aware of your own health, remember, you
cannot help anyone if you do not take care of yourself.
b. Make sure you have a support network. Friends, family,
it doesn't matter. You need people watching you while you
watch your loved one.
c. Remain conscientious of day-to-day progress. Look for
small signs and give thanks for every sign of progress. Feel
good about progress and make sure your loved one feels good
about their progress.
Q.: What advise would you have for medical professionals?
A.: This is a difficult question. I am well aware of the
problems that exist in medical institutions. Understaffed,
overworked professionals dealing with strict procedures.
I learned not to put my total trust in the professional for
the above reasons and I guess the only thing I can say is
that they not give up too quickly on our loved ones.
Q.: What advise would you have for stroke survivors?
A.: If you have a family member who is your caregiver, then
I would strongly advise that you understand that your loved
one is going through this crisis with you. You may not be able
to see physical signs, but the emotional and mental anguish
is a daily one because they have your best interest at heart.
Q.: What has been your husband's reaction to this book? How
did he help with it?
A.: My husband is glad that I wrote it, more because he is
still trying to understand what happened to him. As he read
the drafts, his questions helped me to focus and remember
things I may have forgotten.
Q.: Is there anything you would like to add:?
A.: Sometimes we don't understand why things happen in our
lives. Yet, for everything that happens, if we look closely
there is some good. I had unused skills and the opportunity
has opened for me to help someone else through writing and
sharing my story. If sharing my story can help one person go
through a similar situation, then all of this that we have
gone through will not be in vain
To find out more or to order a copy, visit Christine’s
website at http://www.myfaithsite.org/
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Wacky Weatherization, by Rhonda Petersen
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This fall I decided to weatherize my home by applying that
saran wrap stuff to all the windows. It sounded so easy; you
just tape it up and hit it with a blow dryer and voila-my
house would be air tight against any heat loss. The last thing
I want to lose this winter is heat! I may lose my balance, lose
my keys, lose my hair, lose my teeth, or even lose my mind, but
I can't afford to lose any heat. So I decided to seal thirteen
windows against any and all air leaks. My home would become
a hyperbaric chamber against the frigid gales of winter.
I rushed out and purchased enough saran wrap to securely
cover the Mega-Mall, better to have an overabundant supply
than not enough. In any case, I would save money on heating
costs. The plan was to use the double-sided tape and tape
along the window casements, then slap on the see-through
plastic wrap and blow out the wrinkles. Sounds easy enough.
After getting the double-sided tape stuck to my stroke
affected left side, ripping the tape off my clothes only
to find it stuck to my face, I decided to formulate a new
plan of attack.
Plan B entailed using a long stick to apply the tape in the
general area of the window. Then, when the tape stuck to the
wall, curtain, or sill, I could sneak up on it and press it
in the correct spot.
After about six hours of applying tape to one window, I
realized the job would take the entire winter to finish.
No problem, winter usually lasts until May in Minnesota.
I applied the plastic wrap to the tape simultaneously
wrapping myself in the air tight covering with the hair
dryer somehow stuck on high. My handy stick broke through
the wrap just as I was running out of air. And to think I
have twelve more windows to go!
"Where the sixth sense is a Sense of Humor"
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Web Site Review by Barbara Layne
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I have chosen the website for the United States National
Library of Medicine – www.nlm.nih.gov as my choice for this
month.
This is a very comprehensive site with links and resources
for every kind of health concern. As I have mentioned before,
there are many people who have survived stroke who have had
their lives complicated by other medical problems. It is
important to find a resource that can address all of these
concerns. It can be very overwhelming when all of this flies
at us and having sites like these can give you an opportunity
to sort it all out. You can spend quite some time here, if
you so desire. There is one link after another. It is broken
into five main headings:
Health Information
Library Resources
Research Programs
New and Noteworthy
General Information
These point you to lists of sites and resources. These are used
by medical people as well as the average lay person. In the
Health Information site there is a link that gives a complete
list and detailed information about all of The National
Library of Medicine databases and information resources.
I am sure you will get valuable information from this website.
You can stay there for a few minutes or hours, it’s up to you!
Have a blessed Thanksgiving! The holiday season of 2001 should
be approached with hope and unity. I pray for all of you, I
pray for peace in the world!
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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
editor, Steve Mallory, mailto:SMallory@strokenetwork.org
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