Our Thoughts Control Our Lives

I mentioned in earlier posts this Rolodex on my desk called “The Attitude Builder.” There are 52 cards containing positive affirmations. On the back of each card is a short explanation of the concept. While considering my recent slide, I flipped over the next card and BAMB! There it is - the answer I need.

“The most powerful force I have is what I say to myself and believe”

As I considered the above concept, I flipped over the card and read,
 

I am controlled by what I accept and believe.

So, I choose to believe only things that are loving and beneficial.

There have been times in my life where my negativity created a crappy day. I wonder how many times I have asked, “What else could go wrong today?”

Living with Kennedy’s Disease is “mind over matter.” If you don’t mind, it doesn’t matter. 😜

Life doesn’t have to be as difficult as I make it sometimes. My attitude and my ‘self-talk’ can create moments of chaos or moments of joy. I’ll choose joy anytime. 

Helpful Resources Available

This is a rewrite of any earlier article concerning a series of manuals available for those of us living with a progressive neuromuscular disorder like ALS and Kennedy’s Disease. The resources are available on the ALS Association website.

I explored most of the manuals and found some of the information relevant and potentially useful for those of us with SBMA. The links below are for the PDF version of the manuals.

Functioning When Mobility is Affected by ALS

Some of the topics addressed include:

• Physical and Occupational Therapy 
• Bone, Muscle, and Joint Problems 
• Mobility Equipment 
• When is it time to get a wheelchair? 
• What types of wheelchairs are available? 
• Power Wheelchairs 
• Types of Seating Equipment Used with Wheelchairs 
• Transfers without Equipment 
• Transfers with Equipment 
• Activities of Daily Living (ADL) 
• Home Adaptations 
• Ramps 
• Stair Lifts (Chair Glides) 
• Other Suggestions for Adapting Your Home 

Adjusting to Swallowing and Nutritional Management

Swallowing and choking, at some point in the progression of Kennedy’s Disease, can become an issue. Some of the topics addressed include:

• 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?

  

After the ALS Diagnosis: Coping with the “New Normal”

Some of the topics addressed include:

• Coping with the Diagnosis 
• Coping in Your Mind 
• Acceptance 
• Self-survival 
• Feeling Different and Isolated 
• Intimacy and Sexuality 
• Coping with Life 

Changes in Speech and Communication Solutions

Some of the topics addressed include:

• What can you do if your speech sounds slurred? 
• Tips for Speaking Difficulties 
• What can you do if other people have difficulty understanding your speech? 
• What types of aids are available to help you access computers? 
• Where can you find funding for these devices?

Progression is not always a bad word

Emerson said, 

"Life is a journey, not a destination." 

I write often about my life’s journey. In an earlier article, I used the analogy that the journey is like crossing a stream on stepping-stones. Each stone is a life experience that prepares us for the next one. Before we can fully step onto the next stone, we have to be willing to remove our foot from the previous one (our past beliefs, fears and anger).

It is possible to become so involved in the current stepping-stone (life experience) that it becomes nearly impossible to move forward. We have finally accepted “what is,” so we take a deep breath and say, “I can handle this.” Then, we cling to the moment refusing to let go. This usually happens for one of two reasons: fear or contentment. Today I will focus on fear.

Fear wears many masks. For example, something devastating happens in our lives and we just cannot move on. In fact, we would do anything to go back to the moment just before the crisis. It could be the loss of a loved one, a catastrophe, or a serious disease, or in my case Kennedy’s Disease. Whatever the reason, we find it difficult, if not impossible to move beyond it. Paralysis sets in and over time, wallowing in "what was" and "what if" and “why me” thoughts incapacitates any rational thinking.

I was living in the "contentment" mode for several years in my twenties. It took the realization that I had Kennedy's Disease to shake me to the foundation of my soul. It challenged most everything that I felt was sacred. The word entitlement perfectly describes my thoughts at the time.

My current journey over the last forty years is one filled with many challenges and even more unknowns. While going through something like this, acceptance does not come easy because it is difficult to look beyond the immediate fear, helplessness, confusion and pain.

Yet, once we can see beyond the moment, we tend to come out of these experiences stronger and more appreciative of what we have. We become more aware of the good that does surround our lives. We see and experience life a little differently because we are different. We are a survivor. And, with that realization, we take the next step and find life does go on.
  

Acceptance is a difficult pill to swallow. By breaking it into smaller pieces, however, it is easier to take. We learn from each experience. These small moments in time are like stepping-stones across a wide stream. Each one builds confidence and makes us more willing and less fearful to take another step.

Have I swallowed the entire pill and totally accepted my situation? Not even close. For I am continually being challenged. Nevertheless, I am progressing. Today, I am far more appreciative and understanding because life is still good and I know I can live with this disease. 

In addition, I found buried within this pill called "acceptance" something called "gratitude."

Image: https://steemit.com/selfgrowth

Something is Wrong!

It is sneaky. It creeps up on us during the prime of our lives. We initially deny its existence, but it just will not go away. We make excuses for a fall or the inability to do certain things, but something inside tells us “something is wrong.”

Then, when we finally admit we might have ‘it’, fears find a way of wedging their way into our daily thoughts. We feel isolated - alone and begin to imagine the worst. Because the disease is not well known, we have no idea what to expect. All we know is whatever is happening cannot be good.

As the disease progresses, we begin to pray for a miracle, or at least a treatment. We worry about our family’s future. We wonder if we will have to retire early. And, if we do, what does that mean for the family’s financial well-being?

Other little things begin to nag at us. Who will mow the lawn or do the home repairs? Can we afford to send our children to college? The concerns grow, and, they amplify as our strength fades. And, right about then, our manhood is challenged.

Our friends and family notice the change and want to help, but we shut them out. When that happens, all we have left is our hopes and prayers.

The reality is that the disease does progress. Fortunately, it progresses slowly. There are also brief periods of stability. These periods are something we look forward to because they give us time to adjust to our current capabilities. Unfortunately, we are never prepared for the next progression.

Whether the symptoms begin in our twenties or not until our sixties, the only thing we know is our strength and capabilities will decline.

This is “living with Kennedy’s Disease.”

Because the progression is slow, the actual disease is not nearly as bad as the emotional aspects of learning to live with the disease. Our fears are our worst enemy. Once we learn how to control the fears, we begin to adjust and start living again. When that happens, we see …

There is life after Kennedy’s Disease.

 

The Roller Coaster Ride of SBMA

This last week two people have emailed me expressing their frustrations and anger with Kennedy's Disease. I can understand why they feel this way.  

Zig Ziglar said, “Getting knocked down in life is a given. Getting up and moving forward is a choice.” Feeling overwhelmed is something most of us with Kennedy's Disease have experienced. I have often said that the mental and emotional aspects of the Kennedy's Disease are as difficult as the physical ones. 

Today's post is a rambling of thoughts on the mental and emotional ride we go on after being diagnosed with Spinal Bulbar Muscular Atrophy.

Frustration is the anchor that keeps us from setting sail. What an interesting comment. Until we can let go of these feelings, we cannot truly live.

We have to ‘let go’ before we can move on. Trying to hold on to what we were, or currently have, is a losing proposition, especially with a progressive disorder. It is one that will always end in disappointment and frustration. Letting go of something we cherish, does not happen overnight. It could be the most difficult thing most of us will ever have to do.

Fear is False Evidence Appearing Real. Part of the difficulty of accepting our current condition is the fear of what tomorrow will bring. Fear of what might become is most often the reason we do not want to let go. We want to hold on to today and even wish for that miracle that will bring back normalcy (as we knew it). H. P. Lovecraft said, “The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.”

Patience fosters acceptance and realism tempers expectations. I still get into trouble because I believe that I should be able to do something. If I would take the time to examine my current capabilities before beginning some task or project, I would be more accepting and comfortable with my current capabilities and expected results.

We judge what we do not understand. We tend to forget we are not the only people with problems. Thoreau said, "Could a greater miracle take place than for us to look through each other’s eye for an instant?" Be kind, for everyone you meet is fighting his/her own battle. It is easy to lash out when something does not go right. People do not wear signs explaining what is going on in their life. The person could have a heart condition, or just lost his/her job, or been in an auto accident that morning, or their child has cancer, or a spouse just passed away.

I will end today with another truism. Gautama Buddha said, "Resolve to be tender with the young, compassionate with the aged, sympathetic with the striving and tolerant with the weak and wrong. Sometime in your life, you will have been all of these."

Clip Art:  http://mariafresa.net/single/2069542.html

How Can I Help?

Acceptance is something I have written about several times over the years. Unfortunately, it is not a light switch that can just be turned on. It is not something that automatically means you are happy again or brings you comfort. In fact, there are still things in my life that I have not fully accepted yet.

This process of rediscovery is a never-ending journey for me. Every time I accept something new about my condition and myself, it is like another awakening. In addition, whenever I find a new way to express myself and help others, it opens another door.

Several years ago, I was watching "Saturday Night Lights." The high school football team was down 26 to zero at the end of the first half. The coach ended his halftime pep talk to his players with the following. "Every man at some point in his life is going to lose a battle. He is going to fight and he is going to lose. What makes him a man is that in the midst of the battle he does not lose himself."

Dr. Phil says it another way, "What happens in your life will affect you, but it does not have to define you."

As I travel life’s highway, I need to focus on the moment, forget about the past, and not be too concerned about the future. The only thing I have any control over is this my attitude at this moment.   

Another favorite saying of mine is, "Nothing comes into existence uninvited." If I worry about what could be, it will probably come to pass (or maybe even something worse). On the other hand, if I focus on what I can do today to make a difference for others, then the past and the future really does not matter.

So, my question for you is...

Anger and Frustration

Several times a year someone will contact me lashing out at the world because he has Kennedy’s Disease. He vents his anger, frustration and blame at me for being accepting, or at the research community for not having found a cure, or at God for allowing this to happen to him.

Surprise - surprise, I was not always accepting. In fact, several years ago, I wrote a short story based upon some of my experiences. The basis for the story came from "The Nine Stages of Grieving" published by the University of Buffalo. When I read the story the other day, I realized it was not very good. It was, however, a sincere account of my perspective as I transitioned through most of the stages.

Since everyone is unique, the stages do not necessarily come in the order described below. 

Denial

It is difficult for you to accept your own condition. As a result, you will deny the reality of the disease and make excuses for your falls, cramping and fatigue.

Shock

Once you are convinced that you have the disease, reality sets in. You keep your thoughts to yourself, but find it hard to think of anything else. When asked what is wrong, you do not want to talk about.

Anger

The "Why me?" stage. You are angry at what you perceive to be the unfairness of the situation and you may project it at others, especially loved ones. This is a frustrating stage for family and friends because it follows the period when you were not talking.

Bargaining

At some point, you will attempt to bargain with some sort of deity. You will probably offer to give up something in exchange for the return of your health. Family and friends notice a remarkable change in your attitude.

Guilt

You may find yourself feeling guilty for many things you did, or did not do. Or, you might feel embarrassed for all the emotional pain and financial stress you are and will be causing your family. You often apologize for things no one else remembers. In addition, if you have a daughter, you are the reason why she is a carrier.

Depression

You may at first experience a sense of loss. Mood fluctuations and feelings of isolation and withdrawal may follow. Encouragement and reassurance by others will not be helpful. Your family and friends become concerned. They will try to reach out to others in an attempt to help.

Loneliness

As you go through changes in your capabilities, you might become reclusive and not engage with anyone. You believe no one understands what you are going through, leading to feeling alone, isolated, and afraid.

Acceptance

When this stage arrives, it does not mean happiness or bring comfort. Instead, you are now able to accept and live with the reality of the situation. Life once again moves forward. You find that you can easily admit to yourself and others that you have the disease. You might even tell yourself, “I can live with this.”

Hope

Eventually, you will become mentally and emotionally comfortable with your condition. As the thought of it becomes less painful, you begin to look to the future and realize there is life after Kennedy's Disease. You embrace special moments in life with family and friends.

At the end of my nine stages, this is what I wrote:

"As with most everything in life, time heals most wounds. Many of my initial fears did not materialize. I reached out to a community of others living with the condition and found I was not alone. I learned that people were accommodating and would be there to help. Instead of being a burden, I was still valued as a husband, father, grandfather, great grandfather, friend, and business associate. Just as important, I found I still had something to contribute to the world.

With this knowledge, I discovered something that had been missing recently in my life – Hope."

This is my story, what is yours?

http://pixar.wikia.com/wiki/File:Anger-away.jpg

This Chef Won’t Let His Diagnosis Cripple His Career

Whenever I come across stories of others living with Kennedy’s Disease, I feel compelled to share their stories. Everyone deals with the news in different ways, but everyone goes through many of the same steps that I did forty years ago. This is why my blog is titled, “Living with Kennedy’s Disease.” After the shock, after the ‘no way’ denial, and the first moments of ‘oh my God’, we begin the process of learning to live with this condition.

This is another man’s story. The article, written by Sarah Freeman, is in Muchies, an online service from VICE. A short excerpt is found below.

“The 38-year-old chef’s symptoms started less than a year ago with difficulty walking up and down the stairs. A visit to a physical therapist led to another with his sister-in-law, a neurologist at the University of Chicago. There, he underwent a battery of painful tests, including having needles inserted into every major muscle group on the right side of his body, from his hand to his chef’s knife tattoo-covered calf, and then getting shocked. “Everyone was talking about it in excited voices, but not good excited, and not telling me what the f…’s going on.”

In February, a blood test confirmed a diagnosis of Kennedy’s Disease, an inherited motor neuron disease that disrupts nerve cell transmission signals from the brain to the brain stem and spinal cord. Due to its rarity—about one in 40,000 people have it, according to the Kennedy’s Disease Association—it’s a difficult disease to peg and is often misdiagnosed as amyotrophic lateral sclerosis, or ALS. Unlike the latter, there is no treatment for Kennedy’s Disease, aside from pain management for the muscle cramps that are an early and continuous symptom. His brother and niece were tested shortly later and also diagnosed. Women, however, are typically only carriers and rarely symptomatic.

“This sealed the deal on me and my wife not having kids,” Jacobs says.  … ”

Conveniently Forgetful

This morning was the first fall weather of the year. It was 48 degrees. It felt like fall and our two dogs  loved the cool morning air. Then I noticed my hands didn’t want to function normally. And, I remembered what colder weather brings for many of us living with a progressive disorder.

My mind must put up a protective barrier sometime each spring to block out thoughts of what I just went through. Constantly having cold feet and hands is one thing, but not being able to effectively grip things, like zippers, is more of a problem. It impacts getting dressed and undressed, brushing my teeth, eating, typing, and so much more. Wearing gloves all the time is not the answer. I just have to accept it, be more mindful of my limitations, and move on with life.

Fortunately, we’ll still have some warm days between now and Christmas. And, somehow I’ll manage to survive until March when the hands will thaw out again.

Then, sometime in April or May, I’ll forget about the last winter and the increased challenges it brought. It sure is convenient …

Mr. Fix-it

I miss fixing things. There is something satisfying about finishing a job around the house. Oh, yes, there were times where a few choice words entered into the repair process. That was all part of the game. But, the feeling that comes over me when I repaired something, and it works, was always a treasured moment. And, the dirtier I had to get to accomplish the task, the greater the euphoria when it was done. I believe part of this enjoyment of repairing somethings comes from having to consider the options available, and learning what worked and what didn’t work. I won’t even discuss the times I didn’t have the right tool for the job.

I suppose I inherited this trait from my father. He was a ‘jack of all trades and a master of none.’ He was more gifted than me in being able to envision the end-state. Often, his repairs and projects were not pretty, but they always seemed to work. Probably what I admired most was his ‘can-do’ attitude. No repair or project was too small or large to take on.  

Today, the hands no longer work the way they are supposed to. The legs no longer hold me up. The arms and neck weaken quickly when something is above my head. And, worst of all, I become frustrated easily.

Most of the time I can only watch my wife, a friend, or a handyman perform the repair. This means the repair happens when the other person has time, not when I believe it should be done. It is frustrating because I usually find myself in the same room looking over the person’s shoulder offering advice, even when they don’t want or need it. Thankfully, he or she puts up with my interference–most of the time anyway.

The one area where I still can perform some of the fixes and repairs is electronics. Repairs or fixes to the PC and our tablets are normally still my jobs. If I don’t know how to fix something, I find a video on YouTube that walks me through the repair process. At times, I still need help, but boy do I feel great afterward.

I miss fixing things

I have trust issues

Definition of Trust - firm belief in the reliability, truth, ability, or strength of someone or something.

I grew up trusting that my muscles would be there whenever I needed them. I never thought about walking, running, standing up, picking things up, opening jars or cans, eating and drinking, or playing sports. It was natural and easy — a God-given ability.

When I first stumbled and later when I first fell, I would laugh it off thinking that I was just getting old. I never once considered these events to be associated with anything neurological. Even when stumbling or falling happened a little more often, I still dismissed any thoughts that something strange was happening to my body. I did what any person would do. I exercised harder. And, the cramping was just a byproduct of my more intense workouts.

Today, I survive because I have a lack of faith in my ability to walk, stand up, etc. I cannot trust that my muscles will respond the way they should to keep me upright and free from harm. I don’t like living like this, but I know it is better to be safe than sorry. Even with this skepticism, I still occasionally find myself in trouble. A knee might buckle, my grip might fail, or my throat might close off.

What trust I had in my strength, was extinguished long ago. Now, every day is a good one when I do not have a scare. Even though I can no longer place my trust in my muscles’ abilities, I still trust that I can be a resource, an ear to listen, and a voice when called upon. It is my calling. It is what gives my life meaning.

Keep the faith!

Adapting to the Times

I find it interesting to consider what life must have been like for my mother’s brother. He was the first known case of Kennedy’s Disease in our family. At that time, he was diagnosed with muscular dystrophy because doctors didn’t know about Spinal Bulbar Muscular Atrophy

His family lived on a farm in South Dakota. I’ve seen pictures of him in a wheelchair next to a two story farmhouse with five steps leading up to the porch. All the bedrooms were on the second floor. Outhouses were often the only facilities available, especially in the winter when pipes froze up. If you were wealthy, you might have a bathroom in the house.

There was no such thing as handicapped accessible around the farm or in town. No ramps, steps everywhere, few sidewalks and plenty of gravel or dirt roads. Wheelchairs did not appear to be very comfortable and many didn’t even fold up. The first commercially offered electric powered chairs didn’t appear until the 1950s. I envision the term ‘caregiver’ taking on an entirely different perspective in those days.

Somehow my uncle managed to maintain a reasonable and meaningful life.

Today, it is easy to complain about a business not handicap accessible, Or, one just modified to the minimum guidelines of the law. And, it is frustrating when no handicap parking is available.

I have written about ‘adapting’ in earlier posts. We adapt as the motor neurons die and the muscles atrophy. We don’t like what is happening. We often complain. Yet, if we are to maintain a meaningful life, we still must adapt.

I am just thankful that I live in a time where being handicapped is far less restrictive.

If interested, below are several posts on Adapting:

• http://kennedysdisease.blogspot.com/2015/05/clinging-to-what-was.html
• http://kennedysdisease.blogspot.com/2010/04/then-realization-sets-in.html
• http://kennedysdisease.blogspot.com/2016/05/life-just-isnt-fair.html
• http://kennedysdisease.blogspot.com/2010/02/maturing-process.html
• http://kennedysdisease.blogspot.com/2012/07/coping-is-another-form-of-acceptance.html
• http://kennedysdisease.blogspot.com/2015/04/compensation-another-good-word.html
• http://kennedysdisease.blogspot.com/2015/04/coping-skills-mind-heart-and-life.html

Who’s really in charge?

March’s CostCo Connection magazine had a nice article written by Wally Amos. For those of you who don’t know who Mr. Amos it, he is best known for his Famous Amos chocolate chip cookies.

The article, “Spring-clean your spirit,” reflects on his decision to give up trying to control his life. He writes about how he experienced many anxious moments that caused unrest and other challenges. When he began to analyze these experiences, he discovered that his attempt to control his life, and everything entering it, was causing him disruptions and failures in both his personal and business.

“Being in charge was so ingrained in my consciousness that I needed something more.” A message he remembered reading said, “For peace of mind, let go of being the general manager of the universe.” So, he decided to take a step back, get out of the way and remove himself from the picture. What he found was that there was constant love flowing into his life. He didn’t have to work for it or even search for it, because it was already there.

By changing his perspective of wanting (needing) to be in control, to one of accepting the love that already exists, he found a path of far less resistance.

He ends the article with the following question. “What beliefs are hidden deep within you that need changing? Identify them and clean them out. I promise you, life will become so much more productive, peaceful, fun and enjoyable. …Everything will be resolved when you put love first.”

Those of us living with a constant health issue, for example a progressive neuromuscular condition, often cling to past notions and beliefs. We want our health back. We want to be ‘normal’ again. We can’t understand why this happened. Why isn’t there a cure? Why me?

It is easy to become fixated on what was rather than what is. Acceptance is letting go of past beliefs. It doesn’t mean giving up. We are just giving up trying to control what we have no control over in our life. We will try to see the love and the good in our life without adding “but” or “if” or “should” or “shouldn’t.” We accept what is. We enjoy the rose’s beauty knowing that it also has thorns. And, with this acceptance comes peace and contentment.

I am not naïve enough to believe this change happens overnight. It takes work. There will be many failed attempts, but there will be some wins also. The thorns will still prick me, but I will not let them distract from the rose’s beauty. And that beauty is called “my life.”

Rose Photo:  2010_10300084 rs.jpgBy alive

Thorns Photo:  DSC_0132.JPG By kfjmiller

There is always hope

... but occasionally even that is challenged

My optimism was tested this spring. For those who are followers of this blog, you know I don’t normally like to write about these things. Yet, these last few months have been another learning experience that needs to be shared.

•  As I mentioned, in mid-February my neck muscles gave out and with it there was a lot of discomfort. In the 3½ months following, I learned a lot about this new nuisance.
• Around the same time, I hyper-extended my elbows while performing my long exercise program. I have done it in the past, so I had already modified my exercise routine to minimize the possibility of it happening again. I was wrong.
• In early March my leg strength went way south on me. I was experiencing days where transferring was very difficult to almost impossible to accomplish and I didn’t feel safe standing. About now, I am becoming worried. My usual overly positive attitude was being tested.
• Within a few days of the leg strength issues appearing, I aggravated my lower back. I am assuming it is because I struggled so much trying to transfer and stand.
• Before I could ask, “What next,” my hands went from weak to clubs. I couldn’t hold onto anything. I used two hands to shave and brush my teeth and found even that difficult. 
• In late April, I woke up to the coup de gras. My upper body muscles also went south. My arms gave out on me while trying to perform my standing exercises. I went down, but fortunately, I wasn’t injured. I had to reduce my long exercise program from 90+ minutes to less than 60 minutes (and even found that difficult).  
• I found myself learning new ways to use leverage in my daily routines. It was frustrating.
• Along with all of this happening, the discomfort (I hate to say the words aches and pain) had increased. The cracks in my optimism were now a breach. I don’t ever remember being tested on all fronts at one time.

Then, just when I began to wonder if things could get worse, I woke up to a new day

This slide is over!

• May 22 - My leg strength started to recover first and, within days, I was back to my full leg exercise program without any difficulties. This change alone turned my waning optimism around. With the improved leg strength, my back problems diminished and are now totally gone.
• Within days my neck muscles showed improvement. The aching also dissipated. It is not back to what it was in January, but it is something I can more comfortably live with.
• Then my upper body strength improved. It also feels like they are close to pre-slide levels once again.
•  Hand strength has improved, but along with my neck, they have seen the least improvement.

It has been almost two weeks since the slide ended and some of the strength returned. I feel like a new man. I am also so thankful for the end of the slide and the partial return of my muscles. 

I have mentioned the blessing of having Kennedy’s Disease over so many other conditions because of the slow progression. This 'February through May' challenge was my most difficult one yet. During the downhill race, I was finding it difficult to imagine ‘living with Kennedy’s Disease’ every day in the condition I was in this spring. Yes, there is still HOPE!

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.