January 01

STROKENET Newsletter

January 3, 2001 Issue #3

Steve Mallory, Editor, SMallory@strokenetwork.org

Linda Wisman, Assistant Editor, 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 to the Stroke Network

Newsletter lists. Unsubscribe instructions

are at the end of this newsletter.

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IN THIS ISSUE

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=> Sponsorship Notice

ð Organization Highlights

ð Editor’s Message

=> Embracing the Healing Power of Humor

=> Stroke Column

=> Website Review

=> Monthly Question

=> Survey Question

=> Subscribe/Unsubscribe information

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SPONSORSHIP NOTICE

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If you would like to be a sponsor of this newsletter, please

contact Lin or I about this matter. Sponsorship of the newsletter is necessary in order to improve our service to you

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Organization Highlights, By Steve Mallory

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I am very pleased to see that our organization is rapidly growing. We have many new volunteers, which allows the organization to gain in depth, plus we were able to spread a few of our current volunteers into additional positions and therefore move them into positions which they are more suited for. This has been a pleasant experience to see that our members are finding something useful to do again after their stroke. Perhaps you would like to try. Our organization always needs more volunteers, please contact our Personnel Director, Pat Provost, PProvost@strokenetwork.org, if you think that you could help us with your skills, whatever they may be.

I have tried to list all the people who have either volunteered this month or expanded their position within the organization.

> Fr. Chris Hanes has moved from Vice President of Operations to his new position as President.

> JE Paisley has joined our staff as the new Vice President of Public Relations.

> Pat Provost has moved from her positions as Chat Host and Guest book Greeter to Director of Personnel.

> Carl Wilson has accepted the position as Director of Stroke Support

> Kate Lautzenhiser has accepted the position as Director of Stroke Caregiver Support.

> Lin Wisman has accepted the position as Director of Information.

> Polly Perez has joined the newsletter staff as a Writer. We are blessed with another professional writer.

> Shawn Jennings has joined our staff as one of our Experts. Shawn was a Family Physician until a rare type of brainstem stroke caused quadriplegia. This type of stroke does not affect the cognitive skills.

> Peggy Polyzinski has volunteered for more administrative work on top of the other tasks that she already performs.

> Kathy Kniehoff has accepted the position as Director of Stroke Awareness on top of her other position as Chat Host.

It will be tough to follow this level of new volunteers for another month but we are always looking for more help. If you don’t try you might not know what you can still do, nevertheless, some of you may not be ready to try yet, just know that we will try our hardest to find a position for you. Despite what people may think about what stroke may do to someone, we are joining together to make ourselves one awesome on-line stroke support organization.

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EDITOR'S MESSAGE, By Steve Mallory

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It also pleases me to announce that we now have our own stroke awareness division called StrokeNet. The name had enough meaning to me that I wanted to name the new stroke awareness organization after it. The other stroke awareness organization, SAFE, decided that it was best for them to carry out their stroke awareness mission in other ways and is no longer part of the Stroke Network.

I am excited by the new project that we are starting and if you aren’t already a member of the organization please join us by submitting the form at http://www.strokeawareness.org/join.htm. We already have an attractive new logo in place and are ready to begin making things happen. Please join us and help us organize a stroke awareness chapter in your state.

We will be adding another addition to the StrokeNet newsletter next month. The newsletter will be adding a section for all of our International subscribers from a New Zealand stroke support Newsletter. The article won’t address all those abroad but since we do have a number of subscribers from Australia and the UK, this should be a nice addition for you. We encourage any subscribers from Canada, who have writing skills and think that they can contribute here, to contact Linda about doing so.

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Embracing the Healing Power of Humor by Rhonda Peterson

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“All that we are is a result of what we have thought.” – Buddha

Greetings and Happy New Year,

The staff at the Stroke Network has invited me to write a

humorous monthly column. In this first article, I would like

to introduce myself and explain why I have chosen humor as a

writing genre. I am a Stroke Survivor who writes humorous

articles and short stories for Rhonda’s Ramblings, a national

publication of Peterson Press. Also, I provide presentations

to various groups across the nation on Stroke Awareness and

Recovery Issues.

Some of the stories I write involve humorous incidents I have

encountered during my ongoing recovery from a right-sided

ischemic stroke eight years ago. These short vignettes on

such topics as dating, cooking, driving, home repairs,

hospital visits, shopping, and travel contain a grain of truth,

mountains of poetic license, and are forested in fiction.

Hopefully, these stories will provide you with a smile or a

laugh.

But I remember a time when I could understand only in literal

terms. Jokes, puns, and humorous innuendoes were beyond my

comprehension.

In order to interpret figurative language my brain had to heal

And reorganize. In time, as I began to understand abstract

concepts, I became overjoyed with the ability to again grasp

the elusive Gift of humor. Humor became my coping mechanism and

as necessary as therapy. If I could smile, I knew I was on the

road to recovery.

While traveling the highway of healing, I heard people refer

to my “little personal idiosyncrasies” as “deficits.” The left

side of my body became my “bad side.” These negative words

defeated my therapy, injured my self-worth, and drained my mind

and body of energy needed for recovery. I do not have deficits or

deficiencies, I prefer to call them “quirks” or “idiosyncrasies.”

As Popeye used to say, “I am what I am!”

Friends understand why I sometimes walk into walls or say,

“pardon me” to department store mannequins. While shopping, I

may try a glove on my affected hand, unnerve the sales clerk, and

wrestle the garment to the ground in heavy concentration, and

finally with outstretched-gloved hand holler, “I did it!” Then,

in a matter-of-fact tone, state,“ Oh, I don’t want to purchase

the gloves. I just wanted to see if I could put them on both

hands!” For others, no explanation is necessary, as they have

failed to see the humor and victory over adversity, within

the incident.

It would be inappropriate or undesirable to wear my MRI plastered

to the side of my head in an attempt to explain my actions.

Instead, I choose to enjoy life and not worry about what others

may or may not think. Anyway, I’m too busy remembering my way

home from the shopping mall. Maybe I’ll call “information” and

ask THEM how I get home!

Humor is a powerful healer. I cherish the fact that I can

Appreciate the ability to laugh, foster growth, and heal my soul

within the stories of my recovery. I hope you find the articles

as much fun to read, as they are to write.

I invite you to embrace the healing power of humor and e-mail

me at Rpeterson@Strokenetwork.org with your comments or ideas.

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Stroke Column by Polly Perez, PPerez@strokenetwork.org

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I am Paulina (Polly) Perez and I have been asked to write a

column. First, I want to introduce myself and the easiest way

to this is to tell about my journey to stroke-city and

aphasia-land. I was a fifty-four year old nurse/public speaker

when I lost my equilibrium through a brain attack.

The language center of my poor brain suffered the most damage

of the impact of the blood clots. I am now one of the one

million people in the United States, who has aphasia

uh-fay’-zhuh) and apraxia (uh-prax-she-a) as a result of a

stroke that impaired my ability to use or comprehend words and

articulated speech. More than one million people are stroke

survivors with aphasia. That wasn’t good for a woman that made

her living speaking. The severity of aphasia symptoms can range

from my mild to very severe. My apraxia and aphasia were severe

and vastly changed the way that I communicated. My words were

abducted and this life without words has altered my perception

of reality. Not being able to speak was sheer terror. As I was

a public speaker and author, spoken language was my life.

I have been a nurse for 35 years but I was like most health

Professionals in the fact that I wasn’t knowledgeable about

aphasia and apraxia or what it does to you until I was struck

down suddenly. Being aphasic was like being in a box. My mind

was muddled and I felt that I couldn’t reach anyone.

I decided that I could do three things: give up, fight and

change. My coping style only had two of these styles. Giving up

was not a option to me so I knew that I would fight, change and

heal. I knew that I wasn’t stupid, I just had difficulty saying

words but often people treated me as if I were feebleminded. I

knew that I wasn’t mindless just wordless. I wanted people to

know that my identity was more than what I could say. What was

inside of me was the essence of me not the words that I could

say.

My vocabulary had been whittled to a few misspoken words. I

needed to know where the vital missing link in my mind was so

that I could speak again. When I started trying to deal with

the aphasia that had accompanied this stroke, I felt like I did

when I took a vacation to Germany. I couldn’t speak German and

tell anyone what I wanted or needed and some of the people

there couldn’t understand what I was trying to say either. My

German friends that to translate everything for me. Not being

able to talk felt the same way than I did in Germany except with

aphasia I wasn’t in a foreign land.

Right after the stroke, my mind was still awash with confusion

and my head felt queer. I didn’t seem to have the ability to

organize thoughts very well and everything seemed topsy-turvy

and askew. I simply couldn’t follow a conversation. I tried to

was at no avail. The effort to think was huge. I couldn’t tell

anyone how it felt now as I was almost mute. I felt like I was

lost in a crowd except this wasn’t any crowd.

The thought of saying a word confused me. What did I do first?

I couldn’t say many words and the ones that I could say were

Strange and fractured. It seemed that the brain attack had sucked

up the words in my mind. Not only had my speech been locked up

my words in a prison it seemed that the dictionaries in my brain

were damaged too. I strained to retrieve any words.

The stroke presented unique challenges, unique dilemmas, and

Unique opportunities. I was on a voyage of discovery before I

could write my fifth book, Brain Attack: Danger, Chaos,

Opportunity and Empowerment, I had to re-learn to write, spell,

speak and do math again. My next column will talk about the

strategies and tools I used to restore my life. Please send

me YOUR strategies so that they can be added to the next column.

You can reach me at PPerez@strokenetwork.org.

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Website Review, by Barbara Layne, BLayne@strokenetwork.org

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While looking for less common causes of stroke, I discovered this

month's site www.compura.com/stroke/faq.htm. It is a little

different from the others. There is a lot more to the entire site,

but I am concentrating on just this page. It answers questions in

common, easy-to-understand language.

When you read through the questions (there are 24 of them!) keep

in mind that this site is European, but stoke doesn't have a

country, does it? Our stroke brothers and sisters speak many

languages, but we are united by one common thread.

The diagrams and illustrations help to describe conditions,

procedures, and show brain functioning.

Follow the small underlined areas to elaborate on the

information. There is also a glossary.

This is a "different" site. It's not filled with links and

such, but you will appreciate the plain talk!

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Monthly Question, by Steve Mallory

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The “Age at Stroke” poll can be taken by going to our homepage, http://www.strokenetwork.org. We will continue to record this information and bring you the results next month.

At what age did you have your first stroke? Have you recorded

that age on the website? If not, please take a moment at

http://www.strokenetwork.org. The survey is located on the left

hand side of the home page.

Results as of 2 January 2001:

414 total votes.

17 (4%) were 18-24

25 (6%) were 25-34

80 (19%) were 35-44

104 (25%) were 45-54

91 (21%) were 55-64

59 (14%) were 65-74

31 (7%) were 75-84

7 (1%) were 85 or older

It is interesting that most of our readers (at least the ones

who take surveys) had a stroke at middle age. If all of us join

the survey we can see if that remains true.

At any time you can see the current results. Simply click Current

Results at the bottom of the poll table.

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Survey Question and Results

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Fr. Chris has been good enough to construct a 10-question survey, which can be taken by going to the homepage and clicking on the survey link.

This newsletter is the copyright of the Stroke Network and may

not be copied without the express written permission of the

editor, Steve Mallory, Smallory@strokenetwork.org.

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Steve Mallory

President & CEO

The Stroke Network & StrokeNet

Smallory@strokenetwork.org

Stroke Awareness is a must!