NJSAC Looking For Site For Programs and Office

In 1997, I was asked to speak at Palm Springs Stroke Activity Center (PSSAC) in California.  When I arrived there, I saw a free standing facility, where stroke survivors could go every day for physical, speech and recreational therapy, free of charge.  I met many happy stroke survivors who were continuing their recovery, volunteering and taking part in many activities.  I knew we needed something like that in New Jersey.

In 1998, I completed all the government forms needed to run a nonprofit corporation, and at the beginning of 1999 we began building our membership which is now over 500 stroke survivors.

NJSAC is modeled after PSSAC.  PSSAC is situated in a very well to do section of the United States and is funded by an endowment and generous donations.  PSSAC started in a room in a library.  NJSAC started in my home with programs in Totowa and Saddle Brook.  Our membership is growing as we get more publicity and start more programs for stroke survivors and caregivers.  We are now ready to branch out and are looking for a rental property for our office and programs.  We need about 2500 square feet in a building that is handicap accessible and has convenient parking.  The site could be in Bergen, Essex, Passaic, or Morris County.  We are asking our membership to help us look for a site with reasonable rent.  Since we are a nonprofit organization, a landlord could take part of or all of the rent as a tax deduction.

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Volunteers Needed to Help Start New Programs Throughout New Jersey

NJSAC has been running a program for stroke survivors in Essex and Bergen Counties, our membership covers stroke survivors who live in towns from the northernmost tip of Bergen down to Ocean.  Many of the 550 New Jersey membership cannot attend either of these programs due to distance, time, and/or lack of transportation.  Mary Jo and Ed Schreiber have both retired from their full time positions and are now devoting all their time to NJSAC.  They will be setting up new programs throughout New Jersey similar to the programs running now.

WE NEED VOLUNTEERS who will work with us to set up programs in their particular areas.  Reverend and Friend, Archie Palmer, who performed the marriage ceremony of Mary Jo and Ed, will work with us to get meeting sites in churches in the areas that have a group of stroke survivors who want and will attend the program.  Each program will need a person to run it, in coordination with Mary Jo and Ed who will help to get it started and keep it running.  They will do all they can to make the program successful and will publicize it in the quarterly newsletters.

If you know of a site for NJSAC, or to start a program in your area call Mary Jo at 973-450-4114.

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An Inspirational, Wonderful Evening

The Second Annual Dinner/Fundraiser was held at the Richfield Regency in Verona, on Thursday, November 7, 2002.  Inspirational talks were given by Jackie Mayer, Miss America 1963 and Mike Sheppard, Seton Hall University Baseball Coach.  Each spoke about their personal experience as a stroke survivor and their struggle to recover.

The first and second raffle prizes were won by people in attendance at the dinner.  Linda Good, who brought a friend whose mother is a stroke survivor, won the Panasonic Television.  Isobel Thompson, spouse of Noel Thompson, stroke survivor, won the digital camera.  The Dinner for Two at the Manor, was won by Tom and Geri Sarles.  The 50/50 winner of $122 was Elaine Mathews, stroke survivor.

Eighteen stroke survivors, along with family and friends, attended the dinner.  Each stroke survivor in attendance was honored by the speakers, who announced their names by the applause of everyone.

The committee members who worked hard to make this event a success were Vicki & Tony Galofaro, Manny Gonzalez, Madeline & Mike Kershner, Louis Leone, Chuck McKenna, Mary Jo & Ed Schreiber, and Laura & Bill Winter.  NJSAC thanks each one of them and looks forward to continuing to grow and achieve its mission and goals.

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NJSAC Programs

Evenings
Meetings of stroke survivors and their families are held twice a month from April to December at Senior Care of America in Totowa.  The program runs from 7:00PM to 9:00PM on Friday nights.  The first hour consists of Movement/Sound Therapy for stroke survivors.  The second  hour is a time when families network and socialize during which refreshments are served.

Mornings
For those stroke survivors who find it difficult to get out at night, a similar program is held twice monthly on Wednesday mornings at Kessler Institute in Saddle Brook.  This program runs from 10:00AM to 12 Noon.

There is a charge of $10 per family for each program to offset the cost of a qualified therapist and refreshments.

Caregivers Support Group
A support group for caregivers of stroke survivors meets at Patricia and Norman Pelner's home in Montclair on the fourth Monday of the month.  At these meetings, new caregivers benefit from the support and experiences of caregivers of long term stroke survivors.  Call Pat at 973-746-7473 for the date and directions to the next meeting.

If you would like to be notified by phone in advance of each program, need directions or have any questions, call 973-450-4114.

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Caregivers You Are Not Alone

A support group for caregivers of stroke survivors meets at Patricia and Norman Pelner's home in Montclair on the fourth Monday of the month. At these meetings, caregivers share their frustrations and problems, with others who have experienced stroke in the family.  It is a time to get respite from the unique responsibilities and hear from others who have found solutions to common problems with which caregivers are faced.  At these meetings, new caregivers benefit from the support and experiences of caregivers of long term stroke survivors.  Call Pat at 973-746-7473 for the date and directions to the next meeting.

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May Is Stroke Awareness Month

During "Stroke Awareness" Month, you will see many articles about preventing stroke, and the signs and symptoms of stroke, both of which are important, but the stroke survivor is forgotten.  Very little or nothing will be written about stroke survivors and long term recovery.

Every year, 14,500 New Jersey residents have a stroke, yet New Jersey has no record of how many stroke survivors there are or where they live.  NJSAC is the central registry for stroke survivors.  There are over 500 stroke survivors registered with us, but this is a very small percentage of New Jersey stroke survivors.

Most families have no resources to help them during the early, acute phase of stroke.  When they are told by their health professional that the stroke survivor has reached their "plateau", and medical insurance for therapy is stopped, the stroke survivor and family believe recovery has ended.  NJSAC members know this is not true.  Recovery is slow but can continue for the rest of the stroke survivor's life, if they continue to strive for more and do not become depressed and give up.

NJSAC has had articles in small town newspapers and each time something is published, we get new members from calls from stroke survivors or caregivers saying this is what they have been looking for, but did not know an organization like ours existed.

NJSAC will be featured in the next Garden State Woman publication which went to press on February 28th.  We are looking forward to reaching more New Jersey stroke survivors from it.

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Call For Articles
What has worked for you?

Stroke survivors and their families and friends are always looking for ways to continue recovery.  If you have found a therapist or an alternative therapy/treatment  that has enhanced your recovery, please share this with the other stroke survivors who are members of NJSAC.  We are seeking articles written in the first person, by stroke survivors or caregivers to let others know there are therapists who understand stroke and are using special/different techniques with stroke survivors and getting results.

NJSAC was established because we believe that recovery from stroke continues throughout the stroke survivor's life as long as stroke survivors continue to participate in their own recovery.  No one can say how much a stroke survivor will get back, what or when different functions will return, but we know that the stroke survivor must always strive for more.  Recovery from stroke is never as fast as you want, but it is continuous.  We have seen it in our members, who are getting functions back two, three, five years after the stroke has occurred.

Now we are asking stroke survivors to submit articles about successes they have had in return of function due to a therapist or alternative therapy.  Articles should be written in first person about your experience and faxed to NJSAC at 973-450-0805 or emailed to maryjo@njsac.org .  Your name, as the author of the article, will be included in the newsletter unless you ask that it not be.  Hopefully we will receive enough articles to include a new one in each of our future newsletters, so share your successes with other stroke survivors.  There are many different treatments and therapies out there and some work and some do not work for individual stroke survivors.  We want to let our membership know what is available that has been successful.

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Mary Drylewicz
Painter, Stroke Survivor, NJSAC Member will be guest speaker on April 25th

Mary Drylewicz will bring some of the beautiful paintings she has done with her unaffected hand and share some of the things she has found that have improved function of her affected side.

The program at Senior Care of Totowa will begin at 7:00PM followed by coffee and refreshments and the opportunity to network and socialize.  There will be no sound and movement therapy that night.

There is a charge of $10 per family to defray the cost of refreshments.

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Interested In Walking Better?

If you had a stroke at least 6 months ago, are between the ages of 18 and 70, and have not had any Botox injections, you may qualify for a Clinical Research Study.  The study is being conducted at Kessler Medical Rehabilitation Corporation (KMRREC) in West Orange.

Study participants will undergo gait analysis, Botox injections, and maximal exercise testing free of cost.  Qualified participants will be reimbursed $250.

Call Dr. Sue Ann Sisto at 1-800-648-0296 ext. 6888 or email ssisto@kmrrec.org

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Help NJSAC Spread the Word About Stroke

Do you belong to a group who would like to have speakers from NJSAC come to a meeting and tell them about stroke prevention, signs and symptoms of stroke and long term recovery from stroke?

Stroke survivor support groups invite us to learn more about NJSAC and the services we provide.  Health and Senior groups want to know about prevention of stroke and signs and symptoms of stroke.  Perhaps you belong to a philanthropic civic group that would like to hear about stroke and could help NJSAC with funds to provide services for the 600 New Jersey stroke survivors who are registered with NJSAC.

So far this year Ed and Mary Jo have spoken at:
Ramsey Stroke Discussion Group, where they met wonderful stroke survivors and care givers who are now part of NJSAC's membership.
Our Lady of the Valley Women's Organization in Wayne, on stroke prevention and signs and symptoms of stroke.
Long Branch Stroke Survivor's Support Group at their St. Patrick's Day Dinner, where we were entertained by Janine Allen, stroke survivor.  Janine played "Danny Boy" and "Amazing Grace" on an instrument called a Power Psaltery.

From these talks, NJSAC is growing and gaining new members.  All one has to do is call Mary Jo at 973-450-4114 to set up  a talk for your group.  Ed and Mary Jo will bring educational hand outs, will speak and answer questions participants may have.

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The following inspirational poem was read at our fundraising dinner held last November.  At the request of some who attended the dinner, stroke survivor Jackie Mayer, Miss America 1963 sent it for our newsletter.

Today, upon a bus, I saw a lovely girl with golden hair.  I envied her, she seemed so gay, and wished I were as fair.  When suddenly she rose to leave, I saw her hobble down the aisle.  She had one leg and wore a crutch, and as she passed...  a SMILE.

O God forgive me when I whine, I have two legs.          The World Is Mine!

Then I stopped to by some sweets.  The lad who sold them had such charm.  I talked with him... he seemed so glad.  If I were late it would do no harm.  And as I left, he said to me, "I thank you. You have been so kind.  It's nice to talk with folks like you.  You see he said, I'm BLIND".

O God forgive me when I whine, I have two eyes.         The World Is Mine!

Later walking down the street, I saw a child with eyes of blue.  He stood and watched the others play, for he knew not what to do.  I stopped a moment, then I said, "Why don't you join the others dear?" He looked ahead without a word, and then I knew, he could not HEAR.

 O God forgive me when I whine, I have two ears.         The World Is Mine!

With legs to take me where I'd go, with eyes to see the sunsets glow, ears to hear what I would know,