The National Foundation of Swallowing Disorders is offering a series of patient-centered webinars on the latest research on swallowing disorders. Experts in the field of swallowing disorders such as tongue stem cell research, nutrition, aspiration pneumonia, as they relate to swallowing disorders. If you have a swallowing disorder or are Speech Language Pathologist (SLP), please share this information with them. For more information, visit their website: http://www.swallowingdisorderfoundation.com
Cost: Free for members. Nominal donation required for non-members.
Webinar #1: July 15, 2014
Adult Human Tongue Stem Cell Research
Dr. Peter Belafsky
Webinar #2: August 27, 2014
The Role of Electrical Stimulation in the Treatment of Swallowing Disorders
Dr. Christy Ludlow
Webinar #3: September 30, 2013
How to Find the Right Professional to Help with a Swallowing Disorder
Nancy B. Swigert, MA, CCC-SLP, BCS-S.
Webinar# 4: November 4, 2014
Aspiration Pneumonia in Patients with Swallowing Disorders
Tiffany Mohr, MA, CCC-SLP
Webinar# 5: December 2, 2014
I-Pro Swallowing Solutions
Dr. JoAnne Robbins
Webinar #6: January 27, 2015
Nutrition and Dysphagia
Laura Michael, BS
Webinar #7: February 24, 2015
Degenerative Disease and the Impact on Swallowing
Dr. Michelle Ciucci & Dr. Emily Plowman
Webinar #8: April 7, 2015
Clinical Implications of Swallowing Research
Molly Knigge, MS, CCC-SLP
The NFOSD is an all-volunteer 501(c)(3) non-profit organization that relies on the generosity of our family, friends, and members to provide the financial support required to carry out our commitment to providing patient hope and improving the quality of life for those suffering from all types of swallowing disorders. We do this by enhancing direct patient support, education, research, and raising public, professional, and governmental awareness. Our mission is to advance the prevention and treatment of swallowing disorders in our lifetime.
It is so easy to feel alone when you are diagnosed with a medical condition that requires modifying and changing all the foods and beverages you eat and drink. We take the ability to eat and drink for granted. After all, you’ve been eating and drinking your whole life!
For many of us, eating and sharing meals is how we socialize. Food also has a strong cultural significance. Not being able to share in the joy and satisfaction of enjoying a meal can leave you feeling isolated. This is why it is so important to find the support for managing you condition.
You are most certainly not alone. In 2013, more than ten million Americans had a swallowing test. The National Institutes of Health estimates that one in six Americans over the age of 60 is having trouble swallowing. The US spent over 500 million dollars in dysphagia-related hospital re-admissions in 2013. The statistics are staggering.
The National Foundation of Swallowing Disorders is a great online source of information and support. (Disclaimer: I am a board member of the National Foundation of Swallowing Disorders) The NFOSD offers topical information, webinars, patient support, education, referrals and all things related to research and treatment for swallowing disorders. The NFOSD webinar series covers topics like how to find the right professional to help with a swallowing disorder, nutrition and dysphagia (my specialty) and more. The goal of the foundation is to “advance the prevention and treatment of swallowing disorders in our lifetime”. For more information, visit this website:
Swallowing problems often co-occur with other health issues like Alzheimer’s, ALS, Stroke and Parkinson’s disease. For disease-specific information visit:
ALS Association www.alsa.org
Alzheimer’s Foundation of America www.alzfdn.org
The Alzheimer’s Association www.alz.org
American Parkinson’s Disease Association www.adaparkinson.org
National Stroke Association www.stroke.org
Support for People with Oral, Head, Neck Cancer http://www.sponhc.org
If you are caring for a child with eating or swallowing problems, a great resource is Feeding Matters. Visit their website: www.feedingmatters.org.
If you are looking for support close to home, contact your local hospital. Many hospitals have community outreach and support groups. If your local hospital doesn’t have a swallowing disorder-specific support group, ask them to create one. Or contact your community senior center. Many communities offer support for their aging population.
Making changes to habits and lifestyle can be hard, especially when it is something as basic as eating. Finding the support of others with the condition and from those who treat the condition can make the adjustments and modifications a little easier to swallow.
When I speak to dementia support groups, I mention how helpful it can be to use specially adapted eating utensils. Something as simple as a fork with a larger handle can help restore a bit of dignity to someone who is struggling with feeding themselves.
Recently, I was visiting my friend Yolanda Romero-Alemany in her medical supply store and I saw the helpful eating/feeding items she stocks. Yolanda is a great resource for medical equipment and supplies so I asked her to write this guest blog:
Ever wonder why restaurants’ menus and interiors often are red? Studies have shown that the color red stimulates the appetite.
How does this relate to people eating independently, especially those with Alzheimer’s or Dementia? Red is the color easiest to perceive for Alzheimer’s and Dementia patients which makes it great for tableware. Many Alzheimer’s patients do not eat enough due to lack of hand-eye coordination with silverware or not being able to distinguish the food from the serving bowl/dish. At Scottsdale Medical Equipment & Supplies, we carry the Power of Red line of utensils, bowls, and cups by Essential Medical. The red dish and bowl have nonslip bottoms which hold it in place while eating and the great red color provides contrast between the food and dish. The forks and spoons have large handles to make it easier to grip and can actually bend so the motion to scoop something up from a bowl to the mouth is easier. The Power of Red line also includes a cup with a nose cutout so people don’t have to tilt their heads back to drink. These items range in price from $18-$45.
Scottsdale Medical Equipment & Supplies stocks other Aids to Daily Living products carried at our store in Scottsdale, on the NW corner of Loop 101 and Shea Blvd. We stock many eating/feeding tools which make meal time more enjoyable for everyone.
If you are in the area, stop by our store is at 8752 E. Shea Blvd, Scottsdale, AZ 85260 and “Let our Family Take Care of Your Family”.
When you are a caregiver, it is easy to feel alone and overwhelmed. If you are a family caregiver, it may feel even more challenging because of family dynamics and family roles. Even when you are doing your best, you can’t seem to “fix” what is going wrong. Often, family caregivers are thrust into the role without much preparation. Whether you are caring for an aging parent or a spouse or child with an unexpected illness, switching gears and roles can be HARD.
When you are in the thick of it, please remember to “take the oxygen mask for yourself” before you assist the person you are caring for. “Taking the oxygen mask” means looking after your own basic needs. Take time to eat, rest and care for yourself. You need to do those things that rejuvenate you. Doing so does not make you selfish, it makes you smart. If you can’t breathe deeply or if your body, mind and soul are not nourished, you will no doubt fail. There is only so much of you to go around.
When my mom was in the thick of it, when Dad had more bad days than good, I would remind/nag/cajole her to take time for herself. Many, many times I told her: “I’m losing Dad to Lewy Bodies; I don’t want to lose you as well”. She listened. She asked for help and assistance within the family, from her friends, in the community and through support groups. As the old saying goes: “Many hands make the burden light”.
My parents had always been the first to volunteer when there was an emergency or need whether it was in the family, within the community or among their friends. I am grateful that their community responded when Mom and Dad were in need. Both of my parents taught me the true meaning of grace and courage.
Dad has been gone five years now and Mom continues to move mountains.
In my next blog post, I will share some of the great support groups and online communities in which I have found strength and support. In the meantime, if you would like to contact me, please visit my website: http://www.dysphagiasolutions.com.
I recently spoke at a SPOHNC meeting. SPOHNC is a support group for people with oral, head and/or neck cancer: www.spohnc.org. I was invited to speak about cooking for someone who is having trouble swallowing and to introduce some food products available for people living with swallowing disorders and to discuss some strategies for modifying foods so that they remain tasty but are safe to swallow. Properly modified foods can make a big difference in someone’s life.
I thought I was there to share but I found-out that I was really there to receive.
I thought I was there to teach but I really was taught.
I learned that people who are going through treatment for head/neck/throat cancer need support, encouragement and solutions when it comes to dealing with food and eating.
I learned that people could use some guidance on how to manage and modify “regular” food and the social aspects of eating and dining.
I learned that once the body has healed from the surgery and radiation, there is less and less need for pureed/modified foods because the ability to swallow returns.
I learned that when it comes to swallowing: “if you don’t use, it you lose it”.
I learned that it is terrifying to take food and liquid by mouth, especially after radiation. Often, many people just give-up on eating, instead they take nutrition through a PEG tube.
I learned that recovery is possible.
I was struck by the story of one survivor’s seventeen weeks of radiation and subsequent physical manifestations from that amount of radiation. I’ll call her “Terri”. Swallowing liquids and eating has been extremely painful for Terri so she had almost completely stopped eating. But she steeled herself to have a bite of the tomato that I had prepared for safe swallowing. A whole range of emotions crossed her face as her taste buds came alive. Terri hadn’t eaten in months, instead taking her nutrition through a tube. The tears she shed we’re from pain but from relief and joy and pleasure. Seeing someone who hasn’t been able to enjoy food, enjoying something as simple as a tomato brought me pleasure, as well. I’d grown that tomato in my own garden and I was happy to share it.
At that meeting, I was reminded of the human will to live and just how strong and brave so many of us are and need to be. I was humbled…
If you need advice or information about eating, please contact me at: firstname.lastname@example.org