| |||||
Navigation Menu
|
At Last! Help for Stroke Survivors New Jersey Stroke Activity Center (NJSAC) has been established as a nonprofit organization to help New Jersey Stroke survivors with the unique problems caused by stroke. Stroke survivors and their families can call NJSAC with questions concerning any aspect of stroke, from the acute phase to long term recovery. NJSAC's goal is to be THE PLACE TO CALL for guidance, encouragement, and education that will help stroke survivors and families to deal with the challenge of stroke. NJSAC believes that stroke recovery does not end as long as the stroke survivor continues to participate in rehabilitation, activities and socialization. NJSAC is preparing to provide services to support this belief. Stroke survivors who are interested in becoming a part of this new and innovative service should call NJSAC for more information. 973-759-9900 For the Stroke Survivor: What's Next? Stroke changes your life. There is no doubt about it. The stroke survivor, family and friends are faced with one of the biggest challenges life can hand them. How this challenge is met can result in a new and different life, or no life at all. You can be a stroke survivor or a stroke victim. Stroke survivors choose to meet the challenge head-on. Stroke victims give up. There is no way to predict how much a stroke survivor will recover, but there is also no "window of opportunity" after which recovery stops. The deficits resulting form the stroke are related to the part of the brain which has been injured or killed. The functions and skills controlled by the affected part of the brain are lost. Some functions will return when those brain cells that have been injured recover. In some cases the brain can reorganize its own functioning. Sometimes a region of the brain takes over for the region damaged by the stroke. Stroke survivors sometimes experience remarkable and unanticipated recovery that can't be explained. Your job is to retrain the cells and relearn the skills that the stroke has taken away, by constant practice, to return to functional independence. Remember: Stroke is a Brain Attack Stroke is just as much of an emergency as a heart attack. Quick symptom recognition of and response to the symptoms of stroke by both patients and emergency medical personnel is critical to lessen the destructive effects of stroke. TIA (Transient Ischemic Attack) or ministroke is a sudden but temporary interruption of blood flow to the brain. It comes and goes quickly, lasting an average of a few seconds or 5 to 10 minutes. Some can last up to 24 hours. TIA's do not cause any permanent damage to the brain, but are good predictors that a more serious stroke will occur. Symptoms of TIA or Stroke
Mary Jo Candido, MSN, RN is a registered nurse whose husband had a stroke in 1995. David Chaffin is a stroke survivor whose stroke occurred in 1994. Mario Virgilio is a stroke survivor whose stroke occurred in 1997. Mary Jo and David have been working with stroke survivors for three years; providing answers, encouragement, counseling and support that was not available to them. Mario became involved after he attended an education/support class given by Mary Jo and David for new stroke survivors. Continuing Recovery for Stroke Survivors NJSAC has been established as a nonprofit organization to help New Jersey stroke survivors with the unique problems caused by stroke. NJSAC believes that stroke recovery does not end as long as the stroke survivor continues to participate in rehabilitation, activities and socialization. NJSAC is preparing to provide continued physical and speech therapy at little, affordable cost for stroke survivors. NJSAC has obtained the use of two therapy rooms in Essex and Bergen Counties. Now money is needed to hire qualified physical and speech therapists to provide these services. Stroke survivors who want to participate in therapy and activities of NJSAC should send in the completed form on the back of this newsletter. Stroke survivors and their families are being brought together and forming new acquaintances and friendships at NJSAC. A Great Chef's fund raiser is scheduled to be held on Tuesday, October 5, 1999 for the benefit of NJSAC. Robert Frungillo, son of a stroke survivor and member of the Board of Trustees, is using his expertise and experience in catering to help NJSAC make this a successful fund raising event. Area restaurants will be represented, offering samples of their specialties. An Ad Book for supporters will be an important part of NJSAC's first big fund raiser. Mark the date on your calendar and be ready to sell tickets and space in the Ad Book to make this a success. Watch your mail for more information. Ted Levy, a member of the Board of Trustees and caregiver of a stroke survivor is working on and designing medical jewelry in different metals to be sold for the benefit of NJSAC. The different styles will be available in gold, silver and bronze. NJSAC thanks Ted for his effort and understands the making molds and setting up the process for sales takes time. A raffle will be held for a ring donated by Ted Levy. Raffle tickets will be in the mail soon with additional information and description of the ring. Please help NJSAC achieve its goals by buying and selling tickets. We must help each other. Only those touched by stroke know the unique problems stroke survivors and their families face. NJSAC has been established to fill the gap that is left after rehabilitation has ended and to bring together those who share the mutual challenges and problems of stroke. Success of NJSAC depends on the support of stroke survivors and their family and friends. On Sunday, October 17, NJSAC is participating in American Heart Association's Walk for Heart Disease and Stroke. The Walk will take place at the ADP Corporate Campus in Roseland. Red caps will be worn by the walkers and David Chaffin, founding Trustee and stroke survivor will be a Red Cap Ambassador. David will participate in the opening ceremonies by cutting the ribbon that signifies the beginning of the American Heart Walk. Members of NJSAC, families and friends who participate in the Walk will be wearing NJSAC T-shirts. We hope to have a large group of NJSAC walkers, who will walk together and will inform other stroke survivors about NJSAC. This will be a wonderful opportunity to let other stroke survivors know about NJSAC. Walkers with disabilities may use wheelchairs and assistive devices and can limit their "walk" to their limitations. NJSAC will also be manning the AHA booth at which educational materials about prevention of stroke and heart attacks will be available. Mary Jo Candido and others will be at the booth, representing NJSAC, giving out NJSAC's newsletter and information about the organization. Those who want to participate in the Walk or help out at the booth, please call 973-759-9900 and let Mary Jo know what you would like to do. We will order T-shirts for those who participate. Volunteers Needed to Participate in Stroke Recovery Research Dr. Howard Poizner's laboratory in collaboration with Dr. Gregory Burdea of Rutgers University and Dr. Alma Merians of UMDNJ is currently studying new physical therapy treatments for stroke survivors. Specifically, they are looking at a different type of physical therapy to train patients to effectively use their affected arm. The study will take place at Aidekman Center for Molecular and Behavioral Neuroscience at Rutgers University. This is a center of excellence in the study of the brain and nervous system. They are looking for stroke survivors who are interested in participating in this study. If you agree to participate, you will be asked to come to the center for several hours a day for a two week period to perform a series of exercises with your hemiplegic arm. These exercises will be similar to a computer video game. While seated in front of a computer, wearing a special glove you will be asked to manipulate an object on a computer screen. They are seeking volunteers who meet certain requirements: First Meeting of NJSAC Members On July 11, 1999, a meeting was held at Deerfield Adult Day Care Center in Totowa with 61 stroke survivors, family members and friends who responded to the open invitation that was sent out in May. The three hour program consisted of an introduction of the Founding Trustees and committee members who were responsible for this successful program. Mary Jo Candido, Founding Trustee and Director gave a short history of the establishment of NJSAC and spoke about what is happening now and the exciting future plans. In the second hour, attendees had a choice of participation in one of four breakout groups. Laura Greenstone of Creative Arts Therapy Service introduced the creative arts therapy sessions and spoke about the value of music, dance and art therapy as effective methods of improving the emotional, social and physical well being of the stroke survivor. Each stroke survivor participated in their choice of music, art or dance therapy. The fourth group, for caregivers, was run by Chuck McKenna, board member and caregiver. Chuck spoke about organizing a Caregiver's Support Group with the focus on helping other caregivers cope with the many challenges of caring for a stroke survivor. The group discussed feelings as caregivers to stroke survivors and shared suggestions and encouragement with each other. The final hour provided the opportunity for members to meet each other, network, and realize they are not alone in facing the challenges which stroke in the family brings. On behalf of NJSAC, Mary Jo would like to extend special thanks to the following who contributed to making this meeting so enjoyable and successful.
At the first meeting of members on July 11, 1999, Mary Jo Candido spoke about a matching gift of $10,000 that has been promised to NJSAC when NJSAC receives an individual $10,000 donation. Benny Wildman, stroke survivor and Stan Kleinberg, stroke survivor, suggested that we get 100 donors to contribute $100 each. Ben and Al then started the fund by donating $100 each. A list of donors giving $100 or more is now being kept, with the hope that this goal will be achieved quickly. Please contribute to this fund and help NJSAC grow to help all New Jersey stroke survivors. Don't Forget the Walk for Stroke Survivors Call and register to participate in the Essex County Walk for NJSAC and AHA on Sunday October 17, 1999 at the ADP Corporate Campus in Roseland. Stroke Survivors will wear Red Caps and walkers will wear NJSAC T-shirts and get pledges for NJSAC for walking for stroke and heart disease. Call right away and tell us who will be participating in the walk and the size T-shirts needed so they can be ordered in time for the walk. Mary Jo Candido and David Chaffin will be manning the AHA booth there and handing out information about NJSAC. Continue Speech Therapy at Home We know that speech takes the longest to recover, but we also know that speech can improve as long as the aphasic survivor keeps working at it. Speech-language treatment software is available on a trial basis from Bungalow Software. These software programs augment speech and language therapy and can be used independently by the stroke survivor at home, or with a therapist/clinician. There are eleven different programs to improve skills in:
These programs were designed and tested by a certified speech/language pathologist. If you have a computer at home and want to try out these programs, contact Clay Nichols by e-mail at info@BungalowSoftware.com or call him at 800-891-9937 to get your free trial. If you purchase any of these programs, be sure to mention NJSAC and NJSAC will receive a $10 credit for each program purchased. NJSAC and Bruce J Diamond, ME.d, PhD of the Psychology Department of William Paterson University in Wayne NJ are organizing a Neuro-Rehabilitations, Research and Counseling Support Group to help stroke survivors and families that are living with the unique problems caused by stroke. The group will meet on a regular basis at William Paterson. The three main objectives of the partnership are to: (1) Provide feedback to stroke survivors and their families regarding strategies that would help them cope with problems in the areas of cognition, motor, speech and/or activities of daily living. (2) Conduct research that will allow better understanding of stroke and evaluate efficacy of various rehabilitation interventions. (3) Provide counseling, education and support sessions on a group and individual basis. There are no fees connected to this new and innovative approach to rehabilitation. It is FREE. To best serve the needs of stroke survivors, we need your input. We want to hear what is important to you and what you need. This information will be used for this group, which will begin in January 2000 and also plan other programs based on your responses. On Sunday, October 17, 1999, thirty five stroke survivors, family members and friends proudly wore the NJSAC t-shirt and participated in the American Heart Association Heart Walk at the ADP Corporate Campus in Roseland. David Chaffin, stroke survivor and founding trustee of NJSAC was the Red Cap Ambassador and cut the ribbon to start the walk. The weather was beautiful and all had a wonderful time working together to fight stroke and tell other stroke survivors about NJSAC. NJSAC had volunteers at two booths. One booth was the registration booth where stroke survivors registered and received their Red Caps which told all that they were stroke survivors. NJSAC stroke survivors and supporters met at the NJSAC booth to receive their NJSAC t-shirt, network and tell others about our organization. NJSAC has received a thank you letter from the AHA for manning the booths and they are hoping we will participate and help them again next year. Plan to join us next year in representing NJSAC as a united group for stroke survivors. Help us let other stroke survivors know of our presence. There is no central registry of NJ stroke survivors. We want all New Jersey stroke survivors to register with us. Donors who contribute $100 or more are part of this fund. The following people have since contributed to the fund: Dodie & Tom Falloon Ted Levy, caregiver and Helaine Levy, stroke survivor, have donated two pieces of jewelry to NJSAC. A designer ring appraised at $7,500 and a diamond penchant necklace appraised at $3,500 will be raffled off at a spring event to be announced. Watch for the raffle tickets in the mail and support NJSAC by buying some and selling them to supporters. Thank you, Ted and Helaine! Support Group for Caregivers of Stroke Survivors Caregivers of stroke survivors have been meeting at the home of Chuck McKenna, caregiver and Joan McKenna, stroke survivor, to talk and network with others who live with and care for a stroke survivor. Experiences, suggestions, and support are shared. Caregivers who feel they are alone in caring for a stroke survivor are urged to join this group. Call Chuck McKenna at 201.933.1188 to find out the date of the next meeting and for directions to his home. Caregivers must take care for themselves so they can take care of the stroke survivor. Be good to yourself and enjoy a night out with people who understand. | ||||
