NEW Dysphagia Support Group in the Greater Phoenix Area

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:

  1. Feeding tube management
  2. Thickening products and thickening procedures
  3. Oral Care
  4. National Dysphagia Diet
  5. Compensatory swallowing techniques
  6. Social/emotional ramifications of dysphagia
  7. Optimizing reflux management
  8. New advances in Dysphagia Management
  9. Role of nutrition in maximizing swallowing function
  10. Dysphagia, from the eyes of the caregiver
  11. Free water protocol
  12. Understanding Aspiration Pneumonia
  13. Long term effects of radiation therapy
  14. Living with Xerostomia
  15. Naturally thickened liquids. Naturally pureed foods
  16. Customizing dysphagia therapy
  17. Understanding normal swallowing function
  18. Stroke and Dysphagia
  19. Voice and Swallowing…How are they connected?
  20. Dysphagia Diet Recipes
  21. Maximizing outcomes through the interdisciplinary team approach
  22. 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.SSSC 2016 booth

Hope to see you there!

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Want to make bread, cakes and baked goods safer for those with a swallowing problem? Watch this video!


2015 is the Year of the Caregiver

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.

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Thoughts on “Being Mortal”

being mortal

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.


Finding Support for Swallowing Problems

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:

 www.swallowingdisorderfoundation.com

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.

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Aids for Daily Living help those struggling to feed themselves

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”.

 

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Mom & Dad

M, D, L 2006 cropped

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.


Nourishing Independence with Mom’s Meals

Recently, I worked with a client who had just returned home after six weeks in hospital and rehab. “Irene” had been a vital, active 78 year-old woman before her stroke. More than anything, Irene and her husband “Bob” want to get their lives back to normal.

Since Irene has arrived home, Bob has been working overtime managing all of the activities that come with recovery from stroke including: scheduling doctor’s appointments then going to the appointments, ordering and receiving a hospital bed and wheel chair, juggling therapy visits, picking-up prescriptions, making the house wheel chair friendly and opening all the mail that accumulates while you are occupied away from home, just to name a few.

Bob asked me to help him learn how to cook for and feed Irene. Before the stroke, cooking was Irene’s job in the family but Bob will do anything it takes to care for his wife, including learning how to cook at 78 years-old! Being a bit overwhelmed, Bob has no time to cook for himself, let alone cook and then puree meals for Irene. I’m glad that there are foods like Mom’s Meals – Purees to recommend to him.

Mom’s Meals is an online supplier fresh-cooked, ready-made refrigerated pureed meals. Each meal has a main dish, vegetable and dessert. Their menu consists of comfort foods like:

  • Scrambled Eggs with Brown Sugar Pork Loin Bacon, Bread and Applesauce
  • Roast Beef with Gravy, Mashed Potatoes, Brown Sugar Glazed Carrots, Vanilla Pudding and Applesauce
  • Pork with BBQ Sauce, Cheese Mashed Potatoes, Green Beans, Fruit and Chocolate Pudding
  • Roasted White-meat Chicken with Gravy, Mashed Potatoes, Green Beans and Carrots, Fruit and Vanilla Pudding
  • Pasta with Marinara Sauce and Broccoli, Blueberry Applesauce and Pudding

You order online (or by phone) and Mom’s Meals ships directly to your home. The meals have a 14 day shelf life and are easily reheated in the microwave.

I sampled four meals and I found them delicious and hearty. At between 600 and 700 calories per meal, they are ideal for helping to rebuild your strength. With four breakfast menus and eight lunch/dinner choices, you have some ability to eat a variety of foods. If you like home-cooking, Mom’s Meals purees will appeal to you, as they did to Irene and Bob.

Each full puree meal is $7.49 plus shipping. Shipping is $14.95 regardless of the size of your order.

And if you are too busy to cook, like Bob, check-out their regular meals, as well!

To order from Mom’s Meals purees visit their website: http://www.momsmeals.com/independent-at-home/pureed-menu/.

If you need advice, please contact me: laura@dysphagiasupplies.com or 480-266-5622.

moms meals


Finally, a new Care Manual!

A care manual for living with swallowing problems.

A care manual for living with swallowing problems.

I’ve developed a tool for living with a diagnosis of dysphagia, it is called:

“Making Every Bite Count”

Cooking for Someone with a Swallowing Problem

This care manual helps you how to manage your condition and

keeps your information and research organized

It includes:

• Basic nutrition and how to make every bite count for someone who is having trouble getting enough to eat and drink by mouth.

• How to incorporate the standards of the National Dysphagia Diet into your normal eating habits.

• “How to Puree Just About Everything” – a cookbook with simple techniques on how to modify common, everyday foods.

• Delicious, easy recipes that the whole family can enjoy.

• Updated lists of regular, pre-made modified foods found in most grocery stores.

• Reviews of protein-calorie enhancers, specialty nutritional products, kitchen equipment and more!

• A swallowing screening tool.

• Pre-punched pages for monthly updates.

• Pockets and sleeves for keeping your paperwork and doctors’ orders in one place.

The purchase of this care manual also includes a monthly email update with seasonal recipes, advice, new product introductions and the latest information on webinars and support groups for living with or caring for someone with swallowing problems.

For more information or to order this care manual, please visit my website: http://www.dysphagiasolutions.com


Finding the “New Normal”

Years ago, when I brought home my newborn son, I stumbled as I tried to find my “new normal”. Major life events mean that life has to change in a big way. The “normal – normal” seems to no longer exist.

Those first few weeks of caring for a totally dependent new life were exhausting, scary, “real” and totally overwhelming. Days were measured by feedings, naps and diapers. Since eating is such a basic part of living, I expected that feeding my son would come naturally. It didn’t. We had challenges. I met with Lactation Specialists in the hospital. I read everything I could get my hands on. What helped me most was reaching-out to other moms and getting advice.  Slowly, as I became more comfortable and confident in my role as mommy/care-giver and after my son started eating regularly, the days started to make sense.

I like to compare my experience as a new mom to what families go through when a loved-one is sent home from the hospital after a stroke or other debilitating illness. Care-givers are thrust into roles they’ve probably never before navigated or at least have never practiced on their wife or husband or parent. Many people are often unprepared for the realities of managing the demands of cooking for someone with a swallowing disorder. Unfortunately, the “old way” of preparing meals won’t work anymore and the transition can be difficult. There are no “pureed diet” cooking shows on the Food Network. No famous chef has written a book about how to make pureed foods and beverages safe, nutritious and delicious…but I have.

I have dedicated my life to helping people eat, drink and return as close to “normal” as possible, as they navigate the road to recovery at home. During the ten years I spent working with staffs in hospitals, rehabilitation units and long-term care facilities, I taught many people how to properly manage foods and beverages for their patients with dysphagia. What I teach isn’t difficult or expensive but it can be critical to caring for someone who is living with a swallowing disorder.

The “new normal” will come with time and with a little instruction, a dose of creativity, and the right products. You can help restore the joy of eating and drinking to someone who is living with dysphagia.

If you need help or assistance, please contact me: laura@dysphagiasupplies.com

 

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