Always Listen to your Mother

I have been accused more than once of looking at the world through rose-colored glasses. When I looked up the meaning of the term, this is what I found. “An optimistic perception of something; a positive opinion; seeing something in a positive way, often thinking of it as better than it actually is.” Okay, that is probably me, but why would I want to live my life only seeing the negative?
 

It is easy to become caught up in the negative impact Kennedy’s Disease has on our lives. Yet, there is a little good in some of the changes we have to make to accommodate living with KD. For example, I mentioned the swallowing issues I have experienced recently. Because of it, I now need to:

• Slow down and focus on what I am eating 
• Take smaller bites 
• Chew my food thoroughly before swallowing 
• Not talk with food in my mouth 

Well, these are all things my mother harped on me when I was young. She would be so proud of me today. 😊

Seriously, when I do all of the above and perform my swallowing exercises a couple of times a day, I have less problems with eating and swallowing. And, it sure is better than choking and gagging on food.

Thanks, Mom

My Motto: LFT-PFT

I started this blog nine years ago on a whim. I wanted to capture my thoughts, experiences and emotions of living with this condition called Kennedy’s Disease. In the forty-plus years of being associated with this progressive neuro-muscular disorder, I have had my share of ups and downs. Many of my 860 blogposts are a testament to my life of living with Kennedy’s Disease.

A life where…

• Hopes have risen and been dashed
• Friends made and lost
• Lessons learned and relearned
• Experiences documented and shared

Fortunately, my spirit remains strong. It will not allow me to wallow in self-pity for long. Whenever my resolve is tested, my spirit wins every time.

If I consider how bad things can be in the years ahead, what I can still accomplish today becomes a blessing. When I find myself feeling sorry for what I can no longer do, I take a moment to look back on a life filled with wonderful memories. When I lose hope, the love of my family and friends lifts me up.  

My moto is “Live for Today and Plan for Tomorrow.” I do not want to let negativity ruin my day. Yet, I want to be prepared for what might be in my future. I find if I plan for it, the experiences never seems quite as bad.

All of you living or associated with this rare disorder are my extended family. Thank you for being there for me when I need a lift.

Stay upright!

Dietary Modifications for Swallowing Issues

This is the fourth article in the series on Swallowing Issues. The following information is taken from the ALS Manual on Swallowingand Adjusting to Swallowing Disorders. Since Kennedy's Disease (SBMA) has bulbar related issues, there could come a time when swallowing and choking becomes an issue. I hope you find this information helpful.

On a personal note: Since excessive phlegm and swallowing issues appeared nine months ago, I have noticed a decline in my weight because I have to be careful what I eat and how I eat. Some meals take close to an hour to finish. 

Modified Diets and Mealtime Compensations

The purpose of modifying the consistency of food or liquids is to compensate for swallowing difficulties you might be experiencing. Altering the consistency to a more appropriate texture will help reduce energy expenditure during feeding, chewing, and swallowing. This will allow you to conserve energy throughout the day and experience less fatigue during mealtimes. Eating foods that require minimal chewing and moistening foods with sauces and gravies helps to reduce mealtime fatigue and eating duration.

In the throat, there are two sets of naturally occurring “pockets” that can catch foods, especially if the muscles involved in swallowing are impaired or weakened. Oftentimes this causes a sensation of “food sticking” or residue in the throat. You may feel the need to swallow an additional time in order to pass the residue and alleviate the sensation of food sticking. Moistening foods with sauces or gravies can serve as a lubricant and ease the passage of the food through your throat during swallowing and may reduce the likelihood that the materials will get stuck in the pockets in your throat.

Taking smaller bites and sips of food and liquid respectively may make it easier to control the food during the swallow. Additionally, alternating a sip of liquid every one to two bites of food may help to push the food materials down to your stomach. If medications become difficult to swallow whole, most can be crushed and taken with a tablespoon of yogurt/pudding or provided in liquid form (consult your physician or pharmacist for verification). Four different levels of modified diets are reviewed in Table 3.

Usually, individuals with safe swallowing do best eating a mechanical soft diet. This requires less chewing during the oral preparatory and oral phases of swallowing. Some people, however, may require a more restricted diet if their swallowing is deemed unsafe.

Coughing, choking, or difficulty swallowing may occur even with the use of mealtime compensations and dietary modifications. At that time, it may be beneficial to undergo a Modified Barium Swallow study to determine the safest diet consistency and safe swallowing recommendations.

Using Thickeners

The purpose of thickening agents or thickeners is to make regular liquids thicker (more viscous) and slow the flow rate of the liquid material during swallowing. Recall that swallowing occurs in less than 2 seconds. During this time over 26 pairs of muscles and 5 different cranial nerves need to coordinate and move in a complex pattern to protect the airway and direct the ingested materials towards the esophagus (food pipe) and away from the windpipe.

Adding a recommended thickening agent to liquids allows the swallowing system greater time to coordinate and protect the airway because the thicker liquids move at a slower speed, and in some individuals allows greater control of liquid material during swallowing (Table 4).

Like the levels of solid food modification, there are also different levels of thickening for liquids. Thickeners come in powder (starch based) and gel form and can be added to many of your favorite drinks to make them safer and more manageable. Your SLP will provide you with information on how to thicken your fluids to the recommended consistency. Some examples of brands of thickening agents are, Nestle® Resource Thicken Up, Simply Thick, and Thick-It.

Coughing or throat clearing during or directly after drinking liquids is a sign of aspiration.

Table 3: Dysphagia Diet Levels and Appropriate Foods to Eat

Food Diet Level	Examples of Food in This Level
Level 1: Pureed	• Pudding • Pureed oatmeal, breads, meats • Hummus • Pureed fruits and vegetables
Level 2: Mechanical Soft	• Scrambled eggs • Meatloaf • Well-cooked vegetables • Pancakes • Mashed potatoes • Canned/cooked soft fruits
Level 3: Advanced	• Bread slices • Muffins • Moistened cereals • Pasta, casseroles • Baked potatoes • Soft/ripe fruits • Fish
Level 4: Regular	No Food Avoidances or Restrictions

Table 4: Thickening Liquids

Nectar-Thickened Liquids	• Liquid is a consistency slightly thicker than water • Does not contain fruit nectar or nectar flavoring
Honey-Thickened Liquids	• Liquid resembles the consistency of honey at room temperature

Do You Have Difficulty Swallowing?

Continuing the series on Swallowing Issues, the following information is taken from the ALS Manual on Swallowing and Adjusting to Swallowing Disorders. Since Kennedy's Disease (SBMA) has bulbar related issues, there could come a time when swallowing and choking becomes an issue. 

Typical Swallowing Difficulties

Swallowing difficulty can occur during any stage of the swallowing process. You
may experience one or several symptoms we discuss; however, it is important to be aware of what may develop so appropriate changes can be made to ensure safe swallowing. You may begin experiencing symptoms and find they progress quickly. For this reason, frequent monitoring by your SLP will help to identify and intervene in order to keep swallowing safe.

1. During the first stage of swallowing (medical term: oral stage), you may
experience a “heavy tongue” that makes it difficult to move and control food
and liquid inside your mouth, chew, and clear all material from your mouth
once you swallow. Due to lip weakness, food or liquid may spill out the front of
your mouth while eating.
2. Impairments in the second stage of swallowing (medical term: pharyngeal
stage) may include a sensation of food “sticking” in your throat after you
swallow, coughing frequently during the meal, or food/liquid coming out
your nose.
3. Regurgitation of food or liquid during or after the meal may be an indication
of problems with the third stage of swallowing (medical term: esophageal
stage). 

The onset of swallowing difficulty varies, so being aware of potential
difficulties is beneficial. If you are experiencing any of these symptoms,
it is important that your SLP and neurologist are aware so they can make
appropriate recommendations. These difficulties and other swallowing-related
impairments are listed in Table 1.

Table 1: Typical Swallowing Difficulties 

Stage of Swallowing	Swallowing Difficulty
Oral Preparatory/Oral Stage	• Difficulty managing saliva • Difficulty chewing/fatigue with chewing • Food/liquid spilling out through the lips • Drooling • Difficulty controlling food/liquid in the mouth • Difficulty pushing the food/liquid to the back of the mouth • Residue in the mouth and cheek
Pharyngeal Stage	• Food “sticking” in the throat • Food/liquid coming out the nose • Coughing or choking during mealtime • Shortness of breath and fatigue during mealtime • Reduced cough strength and effectiveness
Esophageal Stage	• Regurgitation of food/liquid into the throat and mouth • Food “sticking” in the throat/base of neck

Risk of Aspiration and Malnutrition

Many people with ALS have entry of saliva or food into their airway without noticing it happening. This is called silent aspiration and is something about which you need to be very aware. Therefore, it is very important to closely evaluate swallowing function with the use of the Modified Barium Swallowing study, which is the gold standard test for identifying swallowing impairment and airway invasion. During this test, you are asked to swallow different consistencies of liquids and food while the swallowing process is filmed with an X-ray machine.

Safe Swallowing Strategies

Your SLP and Registered Dietician/Nutritionist (RDN) may recommend different strategies to help compensate for specific difficulties in swallowing while maintaining nutrition. The purpose of these strategies is to make mealtime easier, more manageable, and safe. Strategies commonly recommended for swallowing and mealtime, and why they may help, are outlined in Table 2.

Table 2: Common Swallowing Strategies Recommended by Your Speech-Language Pathologist

Swallow Strategy	Description	May Help…
Effortful Swallow	Swallowing hard, squeezing all of your throat muscles as hard as you can	Reduce or eliminate “leftovers” or residue in the throat
Chin Tuck Posture	Tucking your chin down to your chest while you swallow	Help protect food or liquid from entering your airway
Small Bites/Single Sips	Taking small, single bites of food and sips of liquid	Reduce exertion and fatigue during the meal
Double Swallow	Swallowing 2x per sip of liquid or bite of solid/soft/pureed food	Help to eliminate food/liquid left over after the initial swallow

Red Flags: Signs That Indicate Trouble Swallowing

Certain symptoms indicate difficulty swallowing and can be observed during
mealtime. Symptoms that indicate a possible swallowing impairment include:

■ Coughing and/or choking on food or liquid while swallowing
■ A wet or gurgling-sounding voice immediately after swallowing food or liquid
■ Difficulty chewing
■ Food escaping out of the mouth during chewing or liquid spilling from the lips
■ Increased mealtimes
■ The need for smaller bites and/or sips
■ Drooling of saliva or liquids
■ Food coming out the nose
■ Regurgitation

■ Difficulty managing secretions (saliva) during meal and throughout the day
■ Shortness of breath during mealtimes

Previous articles on swallowing:
Understanding Swallowing
Sphincter Weakness

Long-Distance Caregivers

Image via Pexels

How to Get to Know Your Loved One’s Neighbors

Claire Wentz contacted me and asked if I would be interested in a guest post on caregivers. I said I would be interested if it is relevant to those of us Living with Kennedy's Disease or another type of progressive neuromuscular disorder. Below is an interesting primer on the subject along with links to additional resources. Thanks, Claire.

Summary

Caregivers ensure the safety, health, and happiness of those who cannot care for themselves. Many people find themselves in a caregiving position as senior loved ones age and develop common disabilities. If you are a caregiver for a family member that lives in another area, tap into the power of community to help. You may be surprised at how many neighbors are willing to lend a helping hand when it comes to caring for seniors.

What is a Caregiver?

When a person is unable to live alone safely, they often rely on a family member or loved one to step in as caregiver. A caregiver helps the person for which they are caring with the activities of daily living. They typically assist with basic living needs such as bathing, dressing, and grooming as well as any special medical needs. Caregivers are responsible for making sure there are meals prepared and that the person in need of care eats enough. They ensure that all housekeeping and transportation needs are met as well. Caregivers are also intermediaries between the cared and medical professionals-- doctors, nurses, specialists, etc. Furthermore, caregivers are a source of companionship for people. They help prevent loneliness and the medical complications that can result from it.

While people of all ages and conditions need caregivers, many people don’t find themselves in the position of needing one until they approach their senior years. As we grow older, health complications tend to increase. Because of this, older Americans are more likely to live with a disability than younger people. According to survey research from 2015, about a quarter (25.4 percent) of Americans ages 65 to 74 are living with a disability. About half (49.8 percent) of those ages 75 and older report living with a disability. Mobility problems are the most common health complication among older Americans.

When your senior loved one is incapable of taking care of themselves due to a health complication, it’s not always possible to pack up and move to where they live. In these situations, many people find themselves acting as a long-distance caregiver. As a long-distance caregiver, you face many challenges. Luckily, there are resources that can help.

It Takes a Village

We often here “it takes a village” in relation to bringing up a child, but the term can be equally meaningful when it comes to the care of seniors. America was founded on the idea that a person can be whomever and do whatever they want, which leads a lot of us to search for opportunities away from home. We don’t have the same cultural values as places like Japan, where children are expected to dutifully tend to their parents. It is possible to adhere to your American independence while caring for your older loved ones; it just takes some networking and creativity.

Organizations such as A Little Help connect seniors and their caregivers to the community around them. When the caregiver can’t be around to assist with certain activities, the service allows them to reach out to friends and neighbors who can. Organizations like A Little Help allow seniors with disabilities to maintain independence into their 80s or 90s, even when their primary caregiver doesn’t live in the same area. Beyond normal caregiving services, they can also help seniors with transportation, household and yard maintenance, and maintaining a healthy and active social life.

Beyond working with programs like A Little Help, long-distance caregivers can connect to their senior loved one’s community in other ways:

●     Plan a neighborhood potluck for the next time you are in town. Have neighbors and friends bring over their favorite recipes and set up some get-to-know-you games. Don’t ask for help during the party, but do have a guest book where people can log their phone numbers and email addresses.

●     Create a street or neighborhood Facebook group people can join. People are more likely to lend a hand if they know there is a network they can reach out to when they need one as well.

●     Go on walks with your senior loved one around the neighborhood. Stop and talk to people as you pass them walking their dogs or if you see them hanging out in their garages or front porches.

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 Should you wish to learn more, visit Caring FromAfar or email Claire by clicking on her name.