2010Q: I am having more difficulty swallowing. Do you have any advice?Thu, 10/07/2010 - 2:16pm — mcormican
News Type:
General
Q: I am having more difficulty swallowing. I think I will soon need a feeding tube. But I am nervous and feel like I am losing my fight against ALS. Do you have any advice? A: Sandra Lesher Stuban: A feeding tube, also known as a PEG (percutaneous endoscopic gastrostomy) or g-tube (gastric tube), is actually your way to win this one battle against ALS. ALS isn't defeating you, rather you are defying its paralyzing effects by using a simple comeback: the feeding tube. You can also look at a feeding tube as a pair of glasses. You could do without it but why make yourself miserable. Here are some general tips for living well with a feeding tube. I am an advocate of keeping things simple. I know some people insist on pureeing the same food the family eats. However the same family mealtime dynamics can occur whatever the food choice. Therefore I recommend a liquid total nutrition meal such as Isocal, Nutren, Osmolite, and others. Plus, it's much easier for your loved one. Caring for a feeding tube is very easy. Simply mix a few drops of liquid antibacterial soap with warm water then use a Q-tip to If you have a length of tube lying on your abdomen, I find it convenient to loop the tube in a loose knot when not being used. External URL (if applicable):
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Ask the Doc: Slowing ALS ProgressionTue, 09/14/2010 - 10:08am — mcormican
News Type:
General
Ask the Doc: Q & A with Edward Kasarskis, MD, PhD
Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. Q: How can I slow the progression of ALS? I hear there is one drug that can make some difference now and then others might be on the horizon? Dr. Kasarskis: This is a question every person with ALS understandably asks. Today there is just one drug approved by the FDA to extend life for people with ALS, and that is riluzole (Rilutek®). Here we are in the 21st century and it seems we have drugs for just about everything, so it is especially frustrating for patients and families to learn that we don’t have more pharmaceutical options when it comes to slowing the progression of ALS and extending survival. There are many studies being conducted now and new drug approaches are being tested. Riluzole was approved based on two survival studies from the 90’s which demonstrated that riluzole extended survival compared to placebo. Some people read or hear about the results described in riluzole’s package insert and get discouraged, asking "is that all there is?" After the initial results were submitted to the FDA for the approval of riluzole, further research showed a consistent survival benefit from taking riluzole. In the future, we will probably be treating ALS with combination therapy in much the same way oncologists treat cancer, not relying on a single drug to cure the entire disease. It is also important to realize that during the initial studies of riluzole, ALS physicians did not employ multi-disciplinary care as aggressively as we do now. Life can also be enhanced and even extended by getting multi-disciplinary care, which addresses the full range of issues facing a person with ALS. Many clinical drug trials are in the development phases or are underway. For example, ceftriaxone, an antibiotic already approved by the FDA, is under study to determine if it (alone or in combination with riluzole) will slow the progression of the disease. (Ceftriaxone has other effects, in addition to being an antibiotic, but ALS is not infectious). This is a multicenter study at 60 sites in North America coordinated by Massachusetts General Hospital and supported by the National Institute of Neurological Disorders and Stroke (NINDS). For more information, visit http://clinicaltrials.gov/ct2/show/NCT00349622. You should discuss participating in this or other clinical trials in your area. As patients, we all stand on the shoulders of other patients before us who volunteered their time and their bodies to participate in a clinical drug study to prove that our blood pressure medication, or our antidepressant, or our drug for ALS is safe and effective. Clinical trials typically require regular testing and evaluation. They usually provide great psychological benefit, just from participating in something that can further our understanding of ALS and could directly help you and other ALS patients in the future. External URL (if applicable):
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Triangle Team Talent Show is a Big HitTue, 08/10/2010 - 9:49am — mcormican
News Type:
General
Cortney Mansfield, Activities and Volunteer Director at Brighton Gardens Assisted Living (Raleigh, NC) organized an ALS Fundraiser Talent Show for residents on May 20, 2010 in honor of Diane Hardison. Cortney invited residents and members of Diane’s family to participate as talent. Diane was the red carpet guest of honor and looked beautiful with her escort, Frank Hielema, Brighton Gardens Physical Therapist. Brighton Gardens Director, Karen Sherman served as emcee. The audience included residents, employees, and visiting families. The event started with Gretyl Kinsey’s video of Diane talking about living with ALS in her own words. Furniture was then moved aside and the floor opened up as a stage to accommodate 12 acts of live music, dance, and comedy routines. Diane’s mom , Hazel Sorrell ( age 94), did a comedy act; Diane’s brother, Todd Sorrell joined Rocky Tutor as a vocal duo; her brother-in-law and nephew , Tony McLamb and Zach McLamb played bluegrass music on bass and banjo; her sister, Marilyn Kinsey danced as Michael Jackson; and her niece, Gretyl Kinsey played the piano and sang. Other acts included residents and employees who line-danced, played the piano, and sang; a blind-folded chef act; and a resident’s granddaughter who played the piano. All performers received small trophies. Gretyl Kinsey won the grand prize for her very moving video. The talent show was enjoyed by all and raised over $500 for Diane’s Team in the 2010 Triangle Walk to Defeat ALS®. External URL (if applicable):
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National ALS Registry Identifies ALS Cases Nationwide; Online Enrollment Coming SoonTue, 08/10/2010 - 8:28am — mcormican
News Type:
Advocacy
The ALS Association has led the fight to establish a National ALS Registry, partnering with Congress and the Centers for Disease Control and Prevention to secure funding and to build the registry. We are excited to report that the National ALS Registry is operational and has begun to identify cases of ALS across the country, including those who have lost their lives to the disease. In fact, thousands of cases already have been identified through existing national databases, such as those for Medicare, Medicaid and the Department of Veterans Affairs. However, this is just the initial phase of the Registry. The Centers for Disease Control and Prevention/Agency for Toxic Substances and Disease Registry (ATSDR) is now preparing to launch the National ALS Registry’s on-line web portal, which will enable all people with ALS across the country to self-enroll in the Registry. The web portal is expected to “go live” later this year and will be available on the CDC’s ALS Registry website. The launch of the portal is the next phase in implementing the Registry. Once fully implemented, the Registry will identify cases of ALS from across the country and collect data that is urgently needed to advance research into the causes of the disease and how it can be effectively treated. Ultimately, the ALS Registry may become the single largest ALS research program ever created. And it will mark the first time that data about ALS cases will be collected in such a comprehensive manner and on a nationwide scale. PALS Test ALS Registry Web Portal How Can PALS Enroll in the Registry? We Still Need Your Help!
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There are Many Paths Toward a CureWed, 01/27/2010 - 4:34pm — mcormican
<!--[if gte mso 10]> <![endif]--> It’s a new year and with that comes renewed hope for those living with ALS. Now is a great opportunity to support The ALS Association Jim “Catfish” Hunter Chapter and fight against Lou Gehrig’s Disease. Listed below are a few suggestions that I believe will help strengthen our partnership together and maintain our progress in 2010.
I know that you are doing everything you can to help create a world without ALS. I hope these suggestions open new doors of possibilities for you. We all share the common goal of a cure for Lou Gehrig’s Disease, and there are many paths to making that goal a reality. Thank you for your unwavering dedication.
Together for a treatment, cure and improved care, Jerry Dawson High School Senior's Tennis Tournament Raises Funds and AwarenessTue, 01/26/2010 - 1:51pm — mcormican
News Type:
General
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New Brochure: The ALS Association Certified CentersTue, 01/26/2010 - 11:18am — mcormican
News Type:
General
See and read the entire brochure at: http://catfishchapter.org/sites/default/files/catfishfiles/center_brochure.pdf
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Ask the Doc: Q & A with Edward Kasarskis, MD, PhD - New AAN guidelinesWed, 01/13/2010 - 11:06am — mcormican
News Type:
General
Ask the Doc: Q & A with Edward Kasarskis, MD, PhD
Edward Kasarskis, MD, PhD is Director of the University of Kentucky ALS Multidisciplinary Clinic at Cardinal Hill Rehabilitation Hospital in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington KY. Q: I heard that the American Academy of Neurology (AAN) has just come out with new guidelines for the care of people with ALS. Will those guidelines change the care I'm getting now or what my doctor is doing for me?
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ALS Association Commemorates 25th AnniversaryTue, 01/05/2010 - 7:33am — Anonymous
News Type:
General
January, 2010
By Gary Wosk, Staff Writer
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Note that all information on this website, while accurate and up-to-date to the best of our knowledge, is subject to change. |
Sandra Lesher Stuban is an RN who was a 38-year old Lieutenant Colonel in the Army when she was diagnosed with ALS. She's the author of The Butcher's Daughter: The Story of an Army Nurse with ALS, in which she describes her journey openly and honestly. Although she is completely paralyzed and uses a ventilator, she lives an active life as a writer, nursing leader and mother of a teenage son.
Over the summer, high school senior Macon Cornick’s father was diagnosed with ALS. With help from her mother Gina, she planned a tennis tournament to raise awareness and funds for The ALS Association - Jim "Catfish" Hunter Chapter.
An exciting new brochure is now available; it’s all about our Certified Centers and the value of the multidisciplinary approach.
ALS Association Optimistic New Treatments and Cure