Adapting to a Life of Decreased Mobility

This will be the last manual I mention in the ALS Association’s ‘Living with ALS’ series. Once again, since many symptoms with ALS are similar to Kennedy’s Disease, I found some of the information relevant and potentially useful for those of us with SBMA, if not today, then perhaps sometime in the future. 

“Functioning When Your Mobility Is Effected,” is an overview on the subject of mobility issues and possible solutions as the condition progresses. It also discusses adapting your activities and your home to accommodate the declining capabilities. Look through the Table of Contents below to see if any of the topics has an interest to you.

Table of Contents

·         Physical and Occupational Therapy

·         Bone, Muscle, and Joint Problems
Sitting
Exercise
Flexibility
Prioritizing

·         Equipment
Walking Aids
Canes
Walkers
Braces
Wheelchairs
When is it time to get a wheelchair?
What types of wheelchairs are available?
Manual Wheelchairs
Power Wheelchairs
Types of Seating Equipment Used with Wheelchairs
Types of Positioning Equipment Used with Wheelchairs

·         Transfers
Transfers without Equipment
Transfers with Equipment

·         Activities of Daily Living (ADL)
Managing ADL
Eating
Brushing Your Teeth
Taking a Bath/Shower
Grooming
Getting Dressed
Moving around in Bed
Drawsheets
Mattresses
Hospital Beds

·         Home Adaptations
Grab Bars
Guardrails
Safety Rails
Ramps
Stair Lifts (Chair Glides)
Porch Lifts
Adapting Narrow Doorways
Other Suggestions for Adapting Your Home
Home Renovations
Increasing Your Safety at Home

The last section is on Safety and I thought I would share these thoughts with you.

“INCREASING YOUR SAFETY AT HOME

The following are simple, inexpensive ways to help increase your safety at home:

·         Let the Fire Department know you are disabled. In case of a fire or other emergency, the firemen will know there is someone in the home who needs assistance. Many Fire Departments have been helpful in other ways, like assisting a disabled person down the stairs in order to get to a medical appointment.

·        

•  Keep a cordless phone handy if you are alone. 
•  Call your telephone company regarding free services for the disabled, including speaker phones. 
•  Many hospitals have lifeline-type services where you can press a button and be connected to them instantly. In some states, there are private companies that provide this type of service for a fee. 
•  If you can walk or are using a walker, remove throw rugs; they can be slippery. 
•  Use an intercom. The ones for infants are inexpensive and effective. 
•  Sliding glass doors in bathtubs make getting in and out, with or without help, very dangerous. If you can have them replaced by a spring-loaded bar with a shower curtain, you will be safer and also increase options of what kind of bath equipment you can use.”

Coping Skills – Mind, Heart and Life

As I mentioned in an earlier post, I ran across a link to the ALS Association’s ‘Living with ALS Manuals’. Since many symptoms with ALS are similar to Kennedy’s Disease, I explored the manuals and found some of the information relevant and potentially useful for those of us with SBMA. 

Today’s manual, “Coping with Change” also has some excellent insights into getting through the

shock of a life changing diagnosis and moving on with your life. It is meant for the individual as well as the family members. The author’s writing style is comfortable and personal – like he is talking directly to you. I highly recommend reading this manual no matter where you are in the process of living with Kennedy’s Disease.

Table of Contents

·         Coping with the Diagnosis
Beginning Your Journey
Reactions to the Diagnosis—The Author’s Observations

·         Coping in Your Mind
Accommodation
Acceptance
Self-survival
Decision Making
Feeling Different and Isolated

·         Coping in Your Heart
Caregiving 
Intimacy and Sexuality 

·         Coping with Life
Just Between You and Me 

“This manual is designed to provide a framework for you to consider thoughts, feelings, and responses to the diagnosis of ALS—in yourself or in a loved one. As such, it is written in an informal and personal manner. The manual consists of four sections. 

The first section, “Coping with the Diagnosis,” explores reactions people may have when they, a family member, or a friend is diagnosed with ALS. Understanding the broad spectrum of normal responses may assist you in knowing that you are not alone in this disease. Anxiety, depression, communication, and support will be discussed.

The second section, “Coping in Your Mind,” presents some possibilities for helping shape your thinking, as well as ways to live through the various transformations you will experience. Such issues as accommodation and acceptance, decision-making, and quality of life are discussed. 

The third section, “Coping in Your Heart,” covers caregiving and how an individual living with ALS can come to terms with receiving help from others. In addition, issues surrounding intimacy and sexuality and how these personal concerns are affected by ALS are candidly discussed.

The last section, “Coping with Life,” focuses on living life to its fullest. This segment looks at both the possibilities and the difficulties of managing your life with ALS.”

I will reiterate, no matter where you are at in the process of learning to live with Kennedy’s Disease, this manual will be helpful for both you and your family.

Swallowing and Choking Difficulties?

While checking my Facebook page, I ran across a link to the ALS Association’s ‘Living with ALS Manuals’ on the Kennedy’s Disease Team Great Britain page. Since many symptoms with ALS are similar to Kennedy’s Disease, I explored some of the manuals and found some of the information relevant and potentially useful for those of us with SBMA. 

The first manual I want to make you aware of is:

Adjusting to Swallowing and Speaking Difficulties

Swallowing and choking, at some point in the progression of Kennedy’s Disease, can become an issue. This ALS manual tackles many of the concerns in an easy to understand manner. Speech issues are not as prevalent in Kennedy’s Disease, but it can be an issue for some of us living with the condition. This manual also discusses communication devices including aids to use computers.

TABLE OF CONTENTS

·         Swallowing
How does ALS affect swallowing?
What should you do if muscle weakness affects your eating habits?
What can you do to control your saliva?
What should you eat to maintain a balanced diet?
Why should fiber be included in your diet?
How many and what kind of fluids should you drink regularly?
What is the most appropriate weight for you?
How can you increase your intake of protein and calories?
Do you need to change the consistency of the food you eat?
What if you cannot consume enough food, even after changing the consistency and using supplements? 

·         Speaking
What can you do if your speech sounds slurred?
Tips for Speaking Difficulties
Helpful Hands, Helpful Voices
Using the Telephone
What can you do if other people have difficulty understanding your speech?

·         Communication Devices
How do you choose a communication device?
What types of communication devices are available?
What are the low-technology options?
What are the high-technology options?
What types of aids are available to help you access computers?
What are the “Alliance for Technology Access for the Disabled” and “The Rehabilitation Engineering and Assistive Technology Society of North America (RESNA)”?
Where can you find funding for these devices?

A few examples of the information you will find in this manual follows:

WHAT IF MUSCLE WEAKNESS AFFECTS YOUR EATING HABITS?

A good rule to follow is to swallow two or three times with each mouthful in order to make sure that all food is cleared from your throat. Moistening food with sauces and gravy is helpful in preventing the feeling of pieces being stuck. Taking a sip of liquid after each bite also may help move the solids.

Moreover, try tipping your chin downward as if you are looking at your plate, so that you shift the structures into place which protect the airway, as opposed to tilting your head backward.

WHAT CAN YOU DO TO CONTROL YOUR SALIVA?

The body produces about four-to-six cups of saliva every day. Normally, this saliva is being moved in the mouth and swallowed unconsciously. If your swallowing muscles are weakened and your lips and jaw are not in control of the saliva, you may have difficulty keeping it in your mouth (drooling), or experience some occasional coughing or choking.

If your saliva is thick, it is important to take in enough fluid to make your saliva thinner. It is easier to swallow thin rather than thick saliva.

If excessive saliva becomes a problem, you should talk to your doctor about the possibility of using medicine to control it. There are also suction machines available which are used to dispose of excess saliva; you can get more information about these aids from your nurse or doctor.

If you are experiencing swallowing issues or are finding it more difficult to communicate, please check out this resource from the ALS Association.

Compensation – another good word

As I mentioned in a few recent articles, neck weakness has paid a visit. Since I never experienced anything like this before, it is another unusual event in my journey.

While considering an article, the word COMPENSATE came to mind. One of the definitions of compensate is “make up for (something unwelcome or unpleasant) by exerting an opposite force or effect.” 

All of us living with Kennedy’s Disease have become familiar with this action. Early on in the progression, it wasn’t difficult to hide the onset of certain symptoms. As time marched on, however, it became more difficult to compensate for the eroding muscle strength and errant firing of the motor neurons. 

At some point, we started using a cane or walking stick. As fatigue increased and the danger of falls became more evident, we slowed down and walked/hiked less. Later on, we began using a wheelchair. As the arms, shoulders, hands and fingers weakened, we found tools to help, or utilized exaggerated movements to help perform often simple tasks. For every action (progressive weakening), we found exert an opposite force to make up for the weakness.

It is said, “Necessity is the mother of invention.” Through the years, those of us living with Kennedy’s Disease have invented things to help compensate for the loss of the use of our muscles. I am amazed at all the ‘tools’ that have been repurposed so that we can continue to live a productive life.

Then, there came a time where we had to ask for help. And, by asking, we again compensated for the loss of our ability to perform a certain function. Fortunately, there are a lot of good people in this world who are willing to help “if we just will ask.”

My comment for today is “Leave your pride at the door because everyone needs help at some time.”

Stay upright and stay safe.