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Program of Hope Is a complete recovery or a return to normalcy a reasonable objective for someone who has survived a stroke? Is it an achievable goal? The Institute for Achievement of Human Potential answers these questions with a resounding YES!!. They have spent the last 50 years working with brain injury and have an impressive record of success. Their results are well documented and are published every three months. What is exciting is the fact that in some cases of profoundly brain injured people, they have had 100% success (complete recovery) and in other cases far more improvement than was ever achieved through conventional methods. Their basic program is explained in detail in their book "What To Do About Your Brain Injured Child" by Glenn Domain. I highly recommend reading this book. I found it quite fascinating and very informative. After I read the book, I knew that I wanted to take their five day intensive course. It was the best thing I ever did. People came from Turkey, Israel, Norway, Denmark, Mexico, Singapore, Malaysia and elsewhere. By the end of the course, we all felt the same way. We had at last truly met health professionals who knew what they were doing when it comes to brain injury and recovery. For many it was the first time they were told the situation was not hopeless. I found the course to be invaluable. Since the goal of getting 100 people to donate $100 or more to NJSAC was established in July of 1999, $9,300 was donated to NJSAC. The people who have donated $100 or more to NJSAC since the last newsletter are: Jim and Nancy Laughlin Only $700 more in donations is needed. Help NJSAC achieve the goal in 2002. Please support NJSAC in its services to stroke survivors and send a tax-deductible donation of $100 or more for this fund. Thanks to the above donors and all others who have supported our efforts. The second year of movement and sound therapy programs culminated with a Holiday Party in December. These programs will resume on Friday, April 12th with the presentation by Angela Johnson. Maureen Nelson, our therapist, supporter and friend will again be conducting the therapy sessions. Stroke survivors who have participated in the group therapy, report improvement in movement of affected arm, speech and the feeling of well-being. Another benefit of attending the programs is the establishment of new friendships with others who are living with similar problems. Much of the success of these programs is due to Jim Laughlin, husband of stroke survivor Nancy, who phones the members the week of the program to remind them of the next program. The programs start at 7PM and consist of one hour of group therapy for stroke survivors and an hour of socializing and networking. There is a charge of $10 per family and refreshments are provided. The programs are held at Senior Care of Totowa, 120 Commerce Way in Totowa. If you would like to be notified by phone about the program, call Jim Loughlin at 973-696-1681 and put your name on the list. For more information call 973-450-4114. Morris Caregivers Support Group Fann Mulvaney, stroke survivor, responded to NJSAC's call for new sites for meetings of caregivers, by offering her home in Budd Lake for meetings. These meetings will begin in the spring. Caregivers who are interested should call Fann at 973-448-1960 to get more information and directions. If you would like to start a caregivers support group in your area of New Jersey, call Mary Jo at 973-450-4114 and she will help you get started. Executive Director and Mr. Ed to Marry In May The union of two people who lost their spouses to stroke, Mary Jo Candido and Ed Schreiber, will take place on May 25, 2002. NJSAC was established in 1998 by Mary Jo to provide therapy and activities for stroke survivors when medical insurance for therapy is no longer available. This marriage will enhance their efforts towards the growth of NJSAC. NJSAC now has a membership of over 500 stroke survivors from all over New Jersey. Currently, the programs run by NJSAC occur in Northern NJ. The long term goal of NJSAC is to have programs running in each county, and to have a freestanding center where stroke survivors can come for physical and speech therapy, activities, guidance and support. This will be modeled after the Palm Springs Stroke Activity Center in California, the only other center for stroke survivors in the United States. No one can predict how much recovery one will have and recovery from stroke is slow, but recovery from stroke can continue throughout a stroke survivor's life, as long as the stroke survivor does not give up, but continues to strive for more. It is now known that dormant cells can take over the functions lost by the brain cells that have been killed and new pathways can be established. The brain can recognize its own functioning, This means that the stroke survivor must retrain the brain cells and relearn the skills that the stroke has taken away. Recovery is now your full time job. Muscles get stronger and actions get easier by constant practice, practice, practice. Mary Jo and Ed promise to work together toward the goal for which NJSAC was established and reach all New Jersey stroke survivors to bring them together. 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. We are asking those who receive this newsletter and the accompanying Press Release to help NJSAC reach the majority of New Jersey stroke survivors who do not know about NJSAC. Fax or mail the Press Release to the Health Editor of your local newspaper(s). Call your newspaper and find out their fax number or send it by mail as soon as possible. When you see it in print, send a copy to us. In the past, when we had an article printed in the newspaper, we received calls from stroke survivors and families wondering why they never heard of NJSAC, and then registered as members. Help us bring Jersey stroke survivors together to meet and network with others facing the unique problems caused by stroke. Let them know about the twice monthly programs of movement and sound therapy, speakers on stroke recovery, caregivers support group, and quarterly newsletters provided by NJSAC. The more members we have, the stronger voice we will have in getting the government to provide programs for continued recovery of stroke survivors. NJSAC members generously responded to the request for donations of $100 or more to reach the goal of collecting $10,000 set in July of 1998. Thanks to the following members and supporters who helped us reach that goal. Michael & Kathryn Roy Thank you for supporting New Jersey Stroke Activity Center As stroke survivors recover, they no longer have the need for some assistive devices, such as wheelchairs, walkers, shower seats, canes, etc. Other stroke survivors may have a need from that same equipment. Do you have equipment stored away that other stroke survivors could use? A column called Can You Use?... will now be a part of this newsletter. People who have unused assistive devices can call and have them listed in this column. They will be put in touch with others who can use the equipment. Arrangements for obtaining the devices will be the responsibility of the two parties involved. NJSAC cannot be responsible from the quality, picking up, or transporting of the equipment. The fundraiser and dinner in honor of stroke survivors will be held at the Richfield Regency in Verona, NJ on Thursday, November 7th. Former Miss America Jackie Mayer Townsend and Mike Sheppard, Seton Hall University Baseball Coach, both stroke survivors will be there. Tickets are $60 per person, for cocktails, hors d'oeuvres and a gourmet dinner. NJSAC will be holding a raffle for three prizes donated by members: a 32" Color TV, a Digital Camera and Dinner for Two at The Manor in West Orange. The raffle will take place the night of the dinner. The dinner need not be present. A 50/50 will be held and we are selling ads for an Ad Journal which will be distributed at the dinner. What can you do to help? Keep the date of the dinner open and plan to attend. It is hoped that all members and supporters of NJSAC will participate to make this a successful event. Proceeds and donations from this event, are kept in an interest bearing account toward the day when the goal, for which NJSAC was established is reached. That goal is to have programs running in every New Jersey county and to have a freestanding facility where stroke survivors can go for physical and speech therapy activities, guidance and support to continue their recovery. When you help NJSAC, you are bringing us one step closer to our goal. In the spring edition of this newsletter, my marriage to Ed Schreiber was announced. Ed and I want to thank all who wished us well and donated money to NJSAC in honor of our marriage. Ed and I promise to work together toward the goal for which NJSAC was established and reach all New Jersey stroke survivors to bring them together. This sourcebook has been created for patients who have decided to make education and internet-based research an integral part of the treatment process. Although it gives information useful to doctors, caregivers and other health professionals, it also tells patients where and how to look for information covering virtually all topics related to Aphasia, from the essentials to the most advanced research. For more information, please visit www.icongrouponline.com/health/aphasia.html An NJSAC supporter is in need of a wheelchair for a family member. If you have a wheelchair that is no longer needed and you would like to help, please call NJSAC. Mary Jo will help you contact this family. This year, the meetings that take place on two Friday's a month got off to a late start, because of Mary Jo and Ed's wedding in May. Our first meeting this summer took place on Friday, July 12th. Maureen Nelson, who has been doing sound and movement group therapy at the meetings, ran her last session because of other commitments. She has promised to keep in touch and has graciously offered to fill in when we have the need. Everyone loves Maureen and we will miss her. At our next meeting, scheduled fro Friday, August 2nd at 7PM, Rita Miller, a physical therapist and Mountainside Hospital will run the group. Rita comes from Connecticut and lives with her husband in Bloomfield. The Friday night sessions are held at Senior Care of Totowa, 120 Commerce Way in Totowa. Sound and movement group therapy takes place during the first hour. Stroke survivors in all stages of recovery participate and have fun during the session. Some family members and caregivers also participate and assist the stroke survivor in doing some of the movements the stroke survivor cannot YET do. The second hour consists of refreshments and networking. There is a charge of $10 per family to help defray the expenses of paying the therapist and the refreshments. Call Mary Jo at 973-450-4114 if you would like to come to these meetings. Participants come from Bergen, Essex, Hudson, Morris, Passaic and Sussex counties. The facility is very easy to get to, if you are familiar with Route 46. Turn off Route 46 at Riverview Drive and pass Home Depot and Staples on your left. Commerce Way is the third traffic light after that shopping center. Turn right on Commerce Way and turn left into the second driveway. Senior Center of Totowa is located at the back of the mall. Second Program to Start Up in Bergen County A daytime program, similar to the above program that meets in the evening, will begin in the fall. It will be held twice a month on Wednesdays at Kessler Institute, 300 Market Street, Saddle Brook. Ann Marie Chesterman, who is the Recreation Therapist at that facility will run the program. We need to know if you prefer morning meetings from 10AM -Noon, or afternoon meetings starting at 1PM or 2PM. Many stroke survivors would like to attend the above program, but do not have transportation. Bergen County Office of the Aged and Disabled provides free transportation during the day. The two hour program will consist of one hour of sound and movement therapy, and one hour of refreshments and networking. There will be a charge of $10 per family to defray the expenses of paying the therapist and the refreshments. We want to make it as convenient as possible for you. Call 973-243-6814 or 973-450-4114 and register for the program. It's time to show your support for NJSAC and order your tickets for the Second Annual Fundraiser on Thursday, November 7th at Richfield Regency Caterers in Verona. Tickets are $60 each and include Cocktails, Hors D'Oeuvres and a Gourmet Dinner. Meet Jackie Mayer Townsend, stroke survivor and former Miss America, and Mike Sheppard, stroke survivor and Seton Hall University Baseball Coach. This is NJSAC's second try at a fund raiser and we are hoping to do better this time and make this a real success. This is not possible without the support of our members. We have over 500 stroke survivors registered with us and are starting some new programs for those who cannot participate in our current programs, because of the lack of transportation. We would like to start even more. Sell the raffle tickets that were sent to you with the last newsletter and call NJSAC for more. Attend the Dinner/Fundraiser with family and friends. Show those who are giving their time and effort to help NJSAC grow, that you appreciate their efforts. NJSAC has to guarantee at least 100 people. Enclosed is the order form for tickets to the Dinner/Fundraiser. Send it back now with your check made out to NJSAC so that we can complete the final arrangements with Richfield Regency. Holiday Party Friday, December 13 The Fifth Annual Holiday Party is scheduled to be held at Senior Care of America in Totowa, NJ on Friday, December 13, 2002 at 7PM. The festivities will include a sing-a-long, food, Chinese Auction, socializing and networking with other members and families. This will be a pot-luck event. Each family that comes is asked to bring in a main dish, salad or dessert and an item worth $15 or more for the Chinese Auction. Last year's party was a great success and we hope that more members will come this year. Call 973-450-4114 to let Mary Jo know you are coming and the number that will be in your party. Directions will be sent upon request. A new caregiver's support group will be meeting on the fourth Monday of every month at the home of Pat and Norman Pelner in Montclair. The first meeting will be Monday, October 28th at 7:30PM. 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. New caregivers benefit from the support and experiences of caregivers of long term stroke survivors. Call Pat Pelner at 973-746-7473 for address and directions to the next meeting.
The following free assistive devices/equipment are available:
Must sell handicap
equipment:
NJSAC will list assistive devices/equipment that you no
longer use. Call Mary Jo at 973-450-4114 or e-mail
maryjo@njsac.org . NJSAC
will not be responsible for pick up or delivery of items.
Back to topics... If you had a stroke at least six 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 Research and Education 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 X6888 or email at ssisto@kmrrec.org The new daytime program begins at Kessler Institute, 300 Market Street. on Wednesday October 2nd. The 2 hour programs, from 10AM - Noon, will be similar to the Friday evening program and will be held on the first and third Wednesday of the month, opposite of the Friday evening programs, which meet on the second and fourth weeks. Members can attend one or both programs. The program will consist of one hour of sound and movement therapy and one hour of refreshments and networking. Call Ann Marie Chesterman for more information and directions at 973-338-4592. Judy Deutsh, PhD, PT was the guest speaker at the September 27th program in Totowa. She spoke about the current virtual reality research being conducted at UMDNJ in Newark, to improve walking and gain in stroke survivors. If you can move your affected foot, even slightly, you could be eligible to participate. Participants will receive compensation for their time. Call her at 973-972-2373 to find out more about the program. Call Chuck McCann, caregiver at 201-933-1188 for more information about this money saving program.
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