June is Nationa Dysphagia Awareness Month so I made this “shout-out” to Kathie Lee Gifford and Hoda Kotb so they can help us raise awareness. I hope this helps you and other who struggle with dysphagia and swallowing disorders. Enjoy!
On Friday, March 11, from 3:00 pm to 5;00 pm, the National Foundation of Swallowing Disorders is kicking-off a support group for those with swallowing disorders.
Future meetings are scheduled for the second Friday of the month from 3:00 pm to 4:00 pm.
Morningstar Senior Living has graciously offered to host our meetings. Morningstar is located at 21432 N 75th Avenue, Glendale, AZ 85305. http://www.morningstarseniorliving.com/communities/morningstar-at-arrowhead/
As this is our first meeting, this will be a planning meeting where we discuss the needs of the community. Future topics will include:
- Feeding tube management
- Thickening products and thickening procedures
- Oral Care
- National Dysphagia Diet
- Compensatory swallowing techniques
- Social/emotional ramifications of dysphagia
- Optimizing reflux management
- New advances in Dysphagia Management
- Role of nutrition in maximizing swallowing function
- Dysphagia, from the eyes of the caregiver
- Free water protocol
- Understanding Aspiration Pneumonia
- Long term effects of radiation therapy
- Living with Xerostomia
- Naturally thickened liquids. Naturally pureed foods
- Customizing dysphagia therapy
- Understanding normal swallowing function
- Stroke and Dysphagia
- Voice and Swallowing…How are they connected?
- Dysphagia Diet Recipes
- Maximizing outcomes through the interdisciplinary team approach
- How are swallowing problems diagnosed
This swallowing disorder support group is open to patients, caregivers, clinicians and anyone who has questions and needs support and resources to live their best lives.
If you need more information or plan to attend, please email Laura Michael at: Laura@dysphagiasupplies.com.
Hope to see you there!
Recently, I worked with a 93 year-old male client who told me that he used to abide by “happy wife, happy life” but now that he has lost his wife after seventy years of marriage, he abides by “happy caregiver, happy life”.
So true: if the care-giver isn’t happy and healthy, then the cared-for can suffer.
Whether you are a family member taking care of a parent (or child) or a professional caregiver, it is vital that you stay healthy, strong and resourceful.
One key to staying healthy is to make time for physical activity. Notice I didn’t say “exercise”. Activities like working in the garden, walking through the neighborhood or the mall, or chasing your dog around the backyard, or dancing to your favorite music all qualify as physical activity. Physical activity not only burns calories and gets your blood flowing, helps you do your “mental laundry” and work-off stress. If you are caring for someone else, you are experiencing stress, whether you recognize it or not.
Another key to good health is eating foods that help you maintain your activity level and core health. The good news is that those foods that help you be you maximize your health are delicious, don’t take a whole lot of preparation and we readily available.
So what foods should you make sure to get onto your plate at each meal every day? Think color. Naturally colorful foods are full of antioxidants, vitamins and minerals. What foods are naturally colorful? Fruits and vegetables! Fortunately, most grocery store produce sections are stocked with packaged, cleaned lettuce mixes, and pre-cut fruits and vegetables. During the off-season, look beyond the produce department to the freezer section for frozen berries, pineapple and mango. Often, frozen fruits and vegetables have higher vitamin content than those found in the produce department because they are harvested and processed at the peak of ripeness, preserving the nutrients.
Managing stress is another key component to staying healthy. Exercising that part of you that clears your mind and frees you from the everyday toil will help dissipate stress. What is it that you love to do? Make time for it. Spend unstructured time with friends. See a movie. Clean-out a drawer. Play cards with your pals. Walk nine holes. Make time for rest and re-creation.
Don’t let your sleep suffer. Turn-off the television, the iPad, computer or whatever screen you are hooked on, at least an hour before bedtime. The human brain needs an hour to recover from the screen before it can shut-off for a sound sleep. Physical activity early in the day can help you sleep soundly. A leisurely walk after dinner can be relaxing. Avoid alcohol right before bedtime. A drink may help you get to sleep but it can make it difficult to get back to sleep if you are awakened in the night.
Humans need to touch and be touched so find a way to use your hands for pleasure. Pet an animal. Knit, crochet or do some form of needlework. Visit a fabric store and caress the beautiful, colorful, textural fabrics. Or pamper yourself and have your hair shampooed and blown dry. Get a pedicure. Be in the moment and find a way to enjoy the feel of the textures around you.
It is just important to stay connected with your friends and community. It is all too easy to get caught-up in the role of caregiver and forget about maintaining your friendships. When you maintain your friendships, you are taking time to maintain yourself.
Every time I speak with a client or caregiver, I ask them what they did for themselves that day. Often, the first time I ask the response is “nothing” but after we talk about how important it is that they take care of themselves, the next time I ask they usually have something to share.
Take time for yourself so you can better take care of others.
Atul Gawande’s marvelous book “Being Mortal: Medicine and What Matters in the End”, is a must-read for anyone who plans to age in the USA. Dr. Atul Gawande is a surgeon, a professor at Harvard Medical School and the Harvard School of Public Health, a writer for the New York Times, and the author of three bestselling non-fiction books on science and public health. He makes difficult subjects interesting and understandable. You don’t have to be a scientist to understand and enjoy his books.
In “Being Mortal”, Dr. Gawande writes eloquently about the history of how we care for our aging population and the importance of retaining the dignity and freedom to be the “authors of our own lives.” In the end, when all else is said and done, that is what matters.
This book has inspired me. This month, I spoke at the Arizona Geriatric Society’s Fall conference. My topic was “Managing Dysphagia Beyond Acute Care”. Once read this book, I reworked my presentation. I made sure to address the joy of eating, the social aspects of sharing a meal and the cultural significance of food. The medical professionals who attended this conference know the science so I shared with them my thoughts on the art and soul of eating.
“Being Mortal” is a call to action for doctors and other medical professionals to expand our responsibilities beyond trying to “fix” what is wrong and embrace the final years of living. This time period should be about living as fully as possible and having the best possible day (week/month/year); it should not be focused on dying. As we reach advanced age or fight a terminal illness, much of what happens to our bodies can’t be “fixed”. Yes, we can eat right and exercise but there is nothing we can do to stop time.
For many of us, as we age, our ability to swallow can become impaired. Illnesses like oral cancer and dementia can rob us of more than our vitality; they can steal from us our ability to eat and enjoy food. According to the National Institutes of Health, one in six Americans over the age of 60 is having trouble swallowing. In 2013, over ten million Americans had a swallowing assessment.
In “Being Mortal” Dr. Gawande builds the case that “as our time runs down, we all seek comfort in simple pleasures – companionship, everyday routines, the taste of good food, the warmth of sunlight on our faces”. Not being able to eat and drink like everyone else can interrupt our everyday routines, be isolating and can lead to depression. Food and eating is basic to our survival, but is even more important to our quality of life and our joy of living. How we eat and with whom we eat feeds the spirit.
Caring for someone with swallowing problems is about more than the mechanics of feeding. Doing it right is science combined with art. With the right tools, creativity and information, it may be possible for those with swallowing problems to share and enjoy a meal. Diagnoses and food modifications help to sustain the ability to nourish the body but we should acknowledge that we need to feed the soul, as well.
To my father, food was love. Dad was a “Great Depression” baby and spent his childhood during a time when food and resources were scarce. When he was a child, there was no school lunch program. The SNAP program didn’t exist. Families grew much of their own food in their yards and, as World War II approached, lived on ration coupons. Owning urban chickens may seem like a trendy thing to do in 2014, but during my father’s childhood, it was a necessity.
Dad’s mother, Louise, was a single, working mother during a time when being a single mother or working mother was not nearly as common as it is today. “Grandma Weezee”, as we called her, was a passionate gardener and a fabulous cook. Her pies are legendary in the family lore and vivid in my memory. One bite of strawberry-rhubarb pie with vanilla ice cream and I am six years old again, sitting on the top platform of a step-stool, eating with my family at her Sunday dinner table.
Dad inherited his mom’s gene for gardening. Dad worked in an office, but the garden was in his blood. For almost four decades, he had a 12’ x 12’ plot in the neighborhood community garden at the bottom of the hill. While the other dads in my neighborhood were playing tennis and golf or having a cocktail with their buddies after work, my dad was in the garden. The community garden had its own social network, but the real reason my dad was there was to feel the dirt in his hands, work the soil and watch nature take over after everything was planted.
From late spring until the hard frost of fall, dad would be getting his hands dirty after work and most of our meals contained what he grew. The idea of not eating your vegetables was insane! “Dad grew that.” was a sentence I heard over and over. From the fresh peas of early spring, to the lettuces of early summer, the tomatoes of August and winter squash of autumn and everything in between, we feasted.
Looking back, it is amazing to me the sheer amount and variety of vegetables my dad grew on 144 square feet of Earth. We shared our bounty with our neighbors and friends, often overwhelming them with produce. To this day, my mom can make zucchini in about 426 different ways, including five variations on zucchini bread alone!
But I never liked being in the garden. There were bugs. It was dirty and smelled of compost and soil. I HATED weeding, so I avoided working in the garden for much of my childhood. When I graduate college and moved to the desert southwest, I bought my vegetables and fruits in the grocery store like civilized people do. My love for produce (and pie!) is deeply ingrained, but store-bought vegetables and fruit just don’t taste the same. Produce from the farmer’s market is an upgrade and those from a CSA (community supported agriculture) are better still, but they are still not the same. There is something ethereal about eating lettuce (or anything else) that was in the ground, breathing, just minutes before it hit my plate.
The autumn after Dad died, I was hit with the urge to put in a vegetable garden. Truthfully, what I felt was more than an urge, it was a compulsion. It was a herculean task to remove a 50 year-old prickly pear cactus that occupied the perfect corner of our yard for growing vegetables, so I enlisted my husband and his brothers to make it happen. Desert soil is nothing like mid-western soil so we had to amend and amend the sandy clay to give the seeds a fighting chance. It didn’t matter: I was driven like never before.
My first vegetable garden was a success in more ways than one. I was able to feed my husband, son and neighbors the fruits (and vegetables) of my labors but, more importantly, I felt closer to my dad and his mother than I ever had in the past. I discovered that I, too, have the gene for gardening. It was long dormant but I share it.
This year marks my fifth year vegetable gardening which means that it’s been five years since we lost Dad. My 2014 garden is shaping-up nicely. This year, I planted Tuscan kale, heirloom rainbow beets, red carrots, mixed lettuces, scallions, tomatoes, and a variety of herbs. Dad never grew Tuscan kale, but I know he’d love it in the minestrone I’ll make when my husband has declared that he is tired of eating kale salad and kale chips.
Working in the garden helps me remember my dad in his best, most vital time, not in his final years when dementia overtook him. Now, if I could just make a pie like Grandma Weezee’s…
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.
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.
Water is an essential element for sustaining life. The human body is composed of more than 60% water. Without water, we won’t survive for more than a few days.
Summer’s warm temperatures and increased humidity can cause dehydration more quickly than during other seasons. No matter what time of year, it is important to stay properly hydrated!
10 Warning Signs of Dehydration:
Thirst. If you are feeling thirsty, you are already dehydrated!
- Dry Mouth. Some medications can add to the sense of dry mouth, reduce saliva production and exacerbate the problem.
- Fatigue. If you feel tired after activity or in the afternoon, you may be dehydrated.
- Dizziness. Feeling light-headed or having vertigo is signs of moderate dehydration.
- Depression or Irritability. If you are feeling a case of the blues or find yourself snapping at people for no reason, you may be dehydrated. Dehydration can cause unwanted behaviors in people with Dementia.
- Dark or Cloudy Urine. If your urine isn’t clear, you are dehydrated. The darker the color of your urine, the more severe your dehydration.
- Difficulty going to the bathroom. Constipation is a common symptom of chronic dehydration.
- Changes in Skin. Flushed, or slightly red, skin is symptom of acute dehydration. Dry skin can be a symptom of chronic dehydration.
- Nausea. Often, if you feel nauseated, you won’t feel like drinking anything BUT it is necessary for treating and preventing dehydration. If you feel nauseated, take small sips of cool, not cold, water.
- Rapid Breathing. Rapid breathing is a sign of severe dehydration and is often accompanied by a rapid heartbeat. If you are experiencing rapid breathing and an increased heartbeat, seek medical attention.
If you experience any of the warning signs, drink sips of cool water to avoid nausea and vomiting.
When you have trouble taking foods and liquids by mouth, it can be especially challenging to get enough hydration. People who must consume thickened liquids are often put-off by the flavor and texture of older, starch-based thickeners. New xanthan gum-based food thickeners like ThickenUp® Clear taste better, mix easily and don’t continue to thicken on standing.
Convenience is also important factor in getting enough to drink. It is easier to just “grab and go” water, juices and other beverages that have been thickened in bulk and are kept readily available in the refrigerator. Commercially prepared pre-thickened beverages provide a consistent supply of thickened liquids but can be a bit more expensive than thickening liquids at home.
Individuals who have limited mobility and who have Dysphagia are at high risk for dehydration because they must depend on others to meet their need for liquids. Keeping cool thickened beverages within “arms-reach” is essential but can be a challenge. One solution is to make ice cubes with water that has been thickened to the proper consistency with a xanthan gum thickener like ThickenUp® Clear and then using the ice cubes in drinks in kept within easy reach. You cannot make ice cubes with starch-based thickeners because they break-down into particles as they melt, causing an unsafe texture.
Eating foods like soups, pureed fruits, yogurt, pudding and other foods that have a high liquid content can also combat dehydration. Another way to get an even more refreshing hydration is to enjoy popsicles made from fruit juices, sweetened drinks or products like Gatorade® or Pedialyte® that have been thickened to the proper consistency with ThickenUp® Clear. Popsicle molds are inexpensive and are available at stores like Target and Wal-Mart.
Dehydration can be exacerbated by the use of diuretics, laxatives, antidepressants, certain antibiotics and other medications. Please consult your Pharmacist about your specific medications if you have questions or concerns.
Dehydration can be very serious. Severe dehydration can lead to hospitalization.
The key to preventing dehydration is simple: avoid it. Be aware of what you are drinking and consume more liquids!
If you want more help and advice, please contact me: Laura@dysphagiasupplies.com