Mealtime Partners, Inc.
Specializing in Assistive Dining and Drinking Equipment
April 2014 Independent Eating and Drinking Newsletter
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Amyotrophic Lateral Sclerosis (ALS) and Eating
Amyotrophic lateral sclerosis is often referred to as Lou Gehrig’s disease in the U.S., after the Yankee’s baseball player who brought ALS into public focus when he made known that he had the disease in 1939. ALS is extremely variable in its clinical characteristics. Subsets include limb onset and bulbar onset ALS and it can also be divided as sporadic (the most common form) or familial ALS, in addition to other smaller subsets.
ALS impacts how individuals are able to eat and drink in different ways depending upon the specific type of ALS that has been diagnosed. Progressive bulbar palsy impacts the voice and causes horse sounding speech that, over time, becomes slurred and difficult to understand. It also causes weakness in the muscles that are associated with chewing, swallowing, and the gag reflex, thus eating and drinking can become difficult to execute without the possibility of choking or aspirating. For those diagnosed with this type of ALS, changes in how they eat, and the texture of food and liquid that they consume are often recommended.
For example, it is essential that they sit in an upright position to both eat and drink to facilitate their head being in an upright position with a slight chin tuck. This allows food and liquid to be less likely to deviate from going down the esophagus and into the wind pipe. Thickened liquids are helpful to reduce the likelihood of choking or aspiration and modifying the texture of foods by mincing or pureeing can help make chewing and swallowing easier and less tiring while maintain good nutrition. Mixed textures of food, like chicken noodle soup that is comprised of both thin liquid and solids, are difficult to swallow. Managing how thin liquids are controlled in the mouth and throat takes concentration because manipulating weak muscles is difficult and tiring. When two different textures of food are presented, the coordination of chewing and swallowing is significantly more difficult. Because the effort that is required to eat is considerable, eating can be exhausting and, therefore, several small meals and/or snacks are recommended rather than three big meals per day.
For those with limb onset ALS, whether the upper or lower limbs are the first to be impacted occurs in about the same ratio. When lower limbs are affected, tripping and stumbling are common along with a change in gait and foot droop. Initial onset can occur in either the right or left leg and foot, equally. However, if the upper limbs are affected, the onset will be experienced in the dominant side first in twice as many cases as the non-dominant side. When ALS occurs in the arms and hands, manual dexterity deteriorates and individual’s lose muscle bulk and become weaker. Spasticity occurs along with joint contractures and muscle cramps. Independent eating becomes very difficult as hand control and strength deteriorate. When hand strength and coordination initially declines, it is easier to eat food that can be picked up with the fingers rather than using a utensil, as finger feeding requires less muscle coordination and movement. As ALS progresses the ability to use hands and arms to eat and drink will decline and gradually become impossible.
When independent eating and drink are no longer possible, the individual has two choices: to be fed by a caregiver, or to use assistive technology to continue to eat independently. Equipment like the Mealtime Partner Dining System can be very helpful over an extended time. It is advisable to acquire the equipment as soon as it is identified that hand function will decline. If the equipment is available early in the disease progression, the user has the opportunity to become familiar with it before it is essential; and, the equipment can also be used on days when the person is excessively tired, or for eating food that is difficult to pick up and eat with a hand-held utensil, like soup or pudding. Because the equipment can be configured in a wide range of modes, it can be adjusted to accommodate the changing needs of the user. It can be set to operate more slowly. It can use two adaptive switches for control, and then, when needed, be changed to work with a single switch or fully automatically, with no switches. Additionally, the Mealtime Partner is able to serve a wide range of food textures varying from normal food that is simply cut into bite sized pieces to minced and pureed food.
Regardless of the type of ALS and how each person chooses to address their eating problems, good nutrition is an extremely important part of dealing with day to day life and making food easily available should not be overlooked.
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Assistive Dining at its Very Best The Mealtime Partner Dining System provides the means to eat independently for those who are unable to feed themselves in the traditional way. Because of its flexible design it can be configured to meet the needs of almost any user and will allow a relaxed, enjoyable meal that is under the control of the person eating. They are free to take a bite of food when they want, and to pause between bites for as long as they choose. Thus they are empowered to have a traditional mealtime and will never be hurried. Because the Mealtime Partner has three different mounting systems, as well as it being placed directly on a table for use, it can be positioned to meet the need of a diverse range of users. The Support Arm allows the spoon to be positioned to deliver food very close to the user’s lips. A small forward movement of the head can access the food on the spoon to be eaten. The Support Arm is suitable for individuals who have very limited or no extremity control because it can be fine tuned to the necessary position to provide access for them. The Mounting Shafts provide comfortable positioning of the Mealtime Partner for those who sit close to a table but are unable to put their knees under the table because they are restricted by their wheelchair or for any other reason. The Shafts allow the device to pivot away from the table to allow easy access for users. Shafts come in five different heights. |
 The Mealtime Partner Assistive Dining Device Mounted on the Support Arm
The Mealtime Partner Mounted on a 8-Inch Shaft |
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For those users who are able to sit at a table with their knees
under it to eat, the Mealtime Partner can be mounted on legs.
The legs position the device at the appropriate height for each
user. Legs are supplied in three different heights. For additional information, please call us at 800-996-8607, or email our staff for assistance by clicking here. |
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| The Mealtime Partner Mounted on 6-Inch Legs | |
| The Mealtime Partner Assistive Dining Device is available directly from Mealtime Partners, Inc. or Select Dealers. | |
How Sensory Processing Disorders Impact Eating
The processing of information provided to us by our senses allows us to function. Without this information being correctly assimilated and interpreted by our body we would be unable to walk, sit up without falling over, see, interpret what our eyes are perceiving, etc. For many people with sensory processing disorders, eating can be an extremely difficult undertaking. With the knowledge of the existence of sensory processing disorders, children are now identified at a very young age as having problems and can be treated. Prior to the 1970’s, people with sensory problems relating to eating were simply described as “picky eaters, difficult, uncooperative, out-of-control”.
Many individuals with disabilities, in addition to their recognized diagnosis, have sensory processing disorders, which can be overlooked because of their initially classified diagnosis. When mealtimes are difficult and many foods are rejected, sensory processing disorders should be considered. For those who are unable to express themselves verbally, or feed themselves sensory problems can be misinterpreted or totally overlooked. The following information provides an overview of sensory processing and its related disorders.
Wikipedia offers the following definition of Sensory Processing: “the neurological process that organizes sensation from one’s own body and the environment, thus making it possible to use the body effectively within the environment. Specifically, it deals with how the brain processes multiple sensory modality inputs, such as proprioception, vision, auditory system, tactile, olfactory, vestibular system, interoception, and taste into usable functional outputs. Sensory processing was defined by occupational therapist Anna Jean Ayres in 1972 as ‘the neurological process that organizes sensation from one's own body and from the environment and makes it possible to use the body effectively within the environment’ ”.
The senses that people are most familiar with are: taste, smell, touch, hearing, and sight. However, sensory modalities relating to sensory processing disorders include the following:
Proprioception – The sensory information that influences the awareness of body position and movement. Perception of body position and movement happens on both a conscious and unconscious level. For example, when sitting on a bench the body maintains an upright trunk position without conscious thought. However, moving from a sitting to standing position involves both conscious and unconscious thought to execute.
Vestibular System – The vestibular system contributes to balance and spatial awareness. It is an essential part of movement and when not functioning properly can cause vertigo, which can manifest as a spinning sensation, and problems with vision. Additionally, when not functioning properly the vestibular system can cause nausea, vomiting and balance disorders.
Vision – The vision system is how information is taken in through the eyes and processed by the brain. It provides information about the environment surrounding the body.
Auditory System – The auditory system is how we hear. The outer ear collects sound generated by sound waves and channels the waves into the ear where they are transferred to nerve impulses, which are interpreted by the brain as sounds.
Tactile – The tactile sense is the body’s awareness of touch. When the skin comes in contact with external material whether it is contacted with pressure, a light stroke, a temperature difference to that of the skin, or whether it is painful, organs that are mainly within the skin, become aware of the touch. Different areas of skin have greater or lesser tactile awareness.
Olfactory – The olfactory system is the body’s method of smelling. Mealtime Partners January 2014 Newsletter and the February 2014 Newsletter discussed the sense of smell. How the olfactory system works is explained in detail in these articles.
Interoception – Interoception is the body’s sensitivity to stimuli originating internally. It is the sense of the physiological condition of the body and is a ubiquitous information channel used to represent one’s body from within.
Taste - Taste is sensed through taste buds in the mouth that have receptors that when they come in contact with chemicals that are disbursed from food, drinks, or other materials placed in the mouth, send messages to the brain about what they taste like: sweet, salty, bitter, etc.
It is quite remarkable, because of the complexities of all of the senses, and the need for them to not only execute properly but to interplay with each other seamlessly, that for most people they work together in a well-coordinated fashion allowing people to function without difficulties. However, for those who have difficulties with how one or more of these senses function, life can be difficult. If sensory processing difficulties impact how ones daily life progresses, or social integration, it becomes a problem that should be addressed.
In the realm of eating, all of the senses are employed. Consequently, eating and meals can be profoundly impacted by senses that are over active, or, in some cases, under active. The result is that the person experiencing sensory processing difficulties may be a very picky eater or limit what they will eat to a few select items. Obviously, the result of this style of eating can be poor nutrition, and inadequate growth.
Parents and health care professionals become aware of eating difficulties relating to sensory processing difficulties in children when the child is quite young (usually under one-year old). A child may not tolerate moving from the bottle or breast to table foods. They may resist being put in a high chair, arch their backs, refuse to eat, gag, and vomit, when food is put into their mouth, or refuse to pick up or touch food. Many children have difficulties at first when they are learning to eat table food but if the problems continue and eating becomes a battle or is disruptive to the family’s life then it is a problem that needs professional help.
It is important to understand that sitting down to eat a meal is not the beginning of the meal for someone who has sensory integration problems. The response to a meal can start long before the meal begins. The regular kitchen noises of food preparation can be disturbing (auditory); the smell of the food that is cooking can also be upsetting (olfactory); the changes in the environment in preparation for the meal like a parent setting the table and filling water glasses (auditory and vision); the movement to the table and requirement to sit in a chair (vestibular), all proceed the beginning of the meal. Therefore the senses are stimulated prior to it being time to eat. And, all of that happens before what food is being served is included in the equation.
In this heightened state of awareness and concern, certain children can anticipate being upset before they ever become involved in their meal.
The tactile impact of food is experienced by the hands, potentially the skin around the mouth, the lips, the tongue, and all of the surfaces inside the mouth. In many cases, food cannot get to the mouth because of how it is sensed by the hands, eyes, and nose. The color, the shape, the texture, the smell, can all offend the senses. This type of tactile reaction often means that a child is unable to tolerate the feeling of food on their hands and face and they will shake their hands and cry because the feeling is so distasteful to them, and they must have their hands cleaned immediately if food gets on them.
Within the same scope of getting food in the mouth, for some people if one food is touching another on the plate, it can cause sensory upset. An easy solution to keep food separate is to use a divided dish to serve everything in. Another issue that can trigger a negative reaction is the color of dishes and utensils on which food is being served. Some children will only eat if the food is presented on the same dishes all of the time and if the same utensils are provided.
These are examples of mealtime problems that are commonly experiences by families with a member who has sensory processing difficulties. If any of these problems or other mealtime difficulties are experienced for more than a few weeks, it is advisable to discuss the issues with a physician who may choose to refer the individual to a feeding specialist or an occupational therapist who specializes in sensory processing therapies.
A list of feeding clinics can be found at the end of our January 2012 Newsletter article, “Autism and Difficulties with Eating”.
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Did You Know?
Did you know that measles vaccines do not always guarantee
that you won’t get measles? Typically, a child receives a
measles vaccination shortly after their first birthday and
receives a booster shot while they are still a toddler. It
was thought that if you were fully vaccinated (i.e., two
shots), you were unable to contract measles. However,
about 1% of people who are fully vaccinated have “vaccine
failure” and can contract measles. Also, it was believed that
those who had vaccine failure were not contagious and could
not pass along the disease. It is also now known that in rare cases a fully vaccinated person can lose their resistance to measles over time and can catch the disease. Not only that, if they contract measles, they are contagious and can spread it to other people who have been vaccinated. More information about this topic can be found in a report published in Science Now: Measles Outbreak Traced to Fully Vaccinated Patient for First Time. |
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