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