Courage

“Courage is not having the strength to go on;

it is going on when you don’t have the strength.”

I reread the above quote from Theodore Roosevelt this morning. It rings true and is a positive reminder for me.


I still remember a friend who was near death. The cancer had spread throughout her body. Even though she couldn’t eat, couldn’t really sleep because of the pain, and was so weak she could hardly move, she always asked how I was doing. She felt terrible that I had Kennedy’s Disease and she prayed for science to discover a cure for it. She accepted that her time on this earth was near its end, so she focused her energy and prayers on others who still might have a chance. That is real courage and strength.

I have a friend living with Kennedy’s Disease who has experienced several strokes over the last few years. He has partial paralysis on his left side including his throat. Speech is now difficult and limited to short conversations. The hands struggle to perform basic functions. Walking, and even transferring, is out of the question. Yet, he is always upbeat and positive about life. He enjoys spending time with his family and friends. And, he always finds a way to lift the spirit of others.

We all know people like this and even some who have beaten the odds. People who found a way to maintain a positive attitude during ridiculously difficult times. They are survivors–if not physically, than within our memories. Their courage supports us during our own difficult times.

My recent slide, fall, and its extremely slow recovery challenges my faith and courage. When I have the occasional lapse and my attitude slumps, I just think of these friends for a needed adjustment. How can I wimp out when they didn’t?

Photo: Schuitema - Human Excellence Group

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. 

What Can I Do?

One of the most frequently asked questions that the Kennedy’s Disease Association (KDA) receives is, “What can I do to help ease the symptoms?”

There are some commonsense principles that can help minimize the impact of certain symptoms as well as maintain, or improve, your quality of life. Some of these are also good for your general health.

A few examples follow:

• Stay active – This is the best way to maintain your quality of life. Keep engaged in activities that stimulate your mind, spirit and body. Look for new activities and hobbies that will be interesting and fun. 

• Stay engaged – Maintaining a support system is critical to your mental and emotional health. Family and friends help keep your mind stimulated. A good laugh is one of the healthiest activities you can participate in. 

• Maintain a healthy weight – The more weight you carry, the more difficult it is to remain active and mobile. Excess weight also affects your heart, lungs and joints. 

• Exercise regularly, but smartly – Some exercise is good, but too much can be detrimental. I have found that performing light exercises every day minimizes or eliminates joint and muscle pain. It also stimulates my heart and lungs as well as my motor neurons and muscles. There is a ‘Smart Exercise Guide’ on the KDA website you might want to review. Ask your doctor to recommend a physical therapist who is familiar with progressive motor-neuron diseases. 

If you aren’t already active or engaged, “don’t try to add too much into your daily routine all at once.” Habits need to change over time.

1. Discuss and prioritize the opportunities with your family and friends. They are an excellent support system. 
2. Select the highest prioritized opportunity. 
3. Transform the opportunity into an activity that you feel you would enjoy doing. 
4. Develop a plan on how to implement the activity. Write the steps down – visualize them. Note: If you have other health issues, check with your doctor before implementing any exercise program. 
5. Ask for support from those who are willing to help. An exercise partner, for example makes the task more fun. 
6. Implement your plan. 
7. Track your results and review weekly how you are doing. 
8. If necessary, adjust your plan. 

But, always remember to...

“Be safe—Pace yourself—Don’t overdo—Have fun.”

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...

Another Story of Living with KD

This is a good story to share with those of us living with Kennedy's Disease. The key is to remember you are not alone.

Parker helps others diagnosed with Kennedy’s Disease

Physics teacher diagnosed with disease in 2006

“After being diagnosed with Kennedy’s Disease in 2006, physics teacher Jameson Parker has not let the condition define him as he continues to help others who have been diagnosed. ...

“Everybody has their difficulties. Some are more visible than others, like mine is a very visible difficulty but I recognize now that everybody has things they struggle with and everybody needs to learn to persevere or to endure through their difficulties.” ...

To read the rest of the article, follow this link: Jameson Parker

Life Doesn’t End With The Diagnosis

I remember when I was diagnosed with ALS. I could not have been more devastated. Then, a few years later, when my diagnosis was corrected to Spinal Bulbar Muscular Atrophy, it was initially a relief. It did not take long, however, for reality to settle in. I had Kennedy’s Disease!

My symptoms appeared in the late 20s. I am now 70. When I look back at those first days after finding out I had KD, I have to laugh. Life did not end with the diagnosis. It began.

After the initial shock, I realized I had control of my thoughts and feelings. The diagnosis was also a wake-up call. I climbed mountains in my 40s, sailed the San Juan Islands, explored the reefs in Hawaii, hiked hundreds of miles of trails in the mountains and lowlands, and became a licensed pilot. I could go on, but all this happened after the symptoms appeared.

The redeeming feature of Kennedy’s Disease is it progresses slowly. I still have good days and bad days, just as I did before KD. I still become frustrated and resentful at times. I still lash out at others when it is meant for me. And, what is interesting about this is that these events would also happen if I did not have KD. It is called ‘LIFE’. I experience, adjust and adapt. But, I continue to live the best life possible.

Life is a journey of discovery. And, as with any person’s life, there are hills and valleys, as well as rivers and deserts, that have to be traversed. There will be good times and not so good times, but each will be its own learning experience. That is why this blog is called, “Living with Kennedy’s Disease… until there is a cure.

Photo: https://weheartit.com/entry/42876870

What—Me Worry?

Many of my friends and family believe I accept living with Kennedy’s Disease better than most. I’m not so certain about that. I know of many men that are well centered and accepting. Perhaps we just hide it better than others do. Or, we aren’t smart enough to understand what is happening. Whatever the reason, I’m comfortable being this way.

I have my down days. I still wonder what the future has in store for me. Probably the only difference is that I don’t dwell on these thoughts. I am too busy ‘living’ to wallow in the muck of uncertainty.

Meditation helps put things in perspective. There is something called ‘noting’ that works for me. Whenever I find myself dwelling on a thought, I notice it (acknowledge it), apply a label to it (oh, that’s a fear of what might happen to me), and move on. I don’t study it or try to understand it; I just notice the thought and then discard it by refocusing on my breathing. If I tell myself to forget it, or force myself to think of something else, it won’t work. But, by just acknowledging the thought and then refocusing on my breath, it no longer is important and stops nagging me.

I also have a couple of good hobbies and social events that allow me to focus on something productive. If I’m engaged in an activity or a conversation, negativity can’t seem to wedge its way into my thoughts.

I’ll give you an example of a recent event. At the beginning of the year, I was in a long slide that had me concerned. If things didn’t change, my daily life would be transformed—and not in a positive way. After a couple of days of wallowing, I ‘noted’ it, and then refocused.

Almost immediately, my thoughts redirected to what I could do and what has helped in the past. I gradually worked my way through the issue and am better now (stronger) than before I started.

We are all human. We have concerns and fears. However, that doesn’t mean they have to control our lives.

Always Remember, You Are Not Alone

Several times a week I receive emails or comments from readers. Often, the person is reaching out, looking for help or support. Most of the time, it is the spouse or another loved one who makes contact on behalf of another. Last night I received a heartfelt request from a young woman whose husband was recently diagnosed with Kennedy's Disease. Below is a portion of my response to her. I post this hoping it might also help others.

______________________

The early years of Kennedy's Disease are the worst. Acceptance is difficult. You keep hoping and praying this is a mistake. You hide the changes that are going on in your life; often from even the ones you love the most. You constantly worry about losing the respect of others because you are no longer able or capable. Pride is a terrible adversary.

Worst of all, you believe you are letting down the ones you love. You are supposed to be the one who takes care of your spouse and your children. You visualize what you will be like in the future as the disease progresses and it crushes your hope. It becomes a constant battle of mind and emotions. And, all you do is make matters worse. You feel alone and isolated from the world you knew and loved.

Forty years of living with Kennedy's Disease affords me the opportunity to share with others that there is a life still worth living. Many of the fears I harbored in my thirties never came true in the way I envisioned them.

Living with Kennedy's Disease is a growth opportunity. You learn not to take things for granted and to be joyful and thankful for this wonderful life you have. You discover things about yourself that you never would have imagined prior to Kennedy's Disease. Since you read my blog, you know how important my gratitude journal is to me. It is my way of giving thanks for those special moments each day.

YOU ARE NOT ALONE. Those of us living with Kennedy's Disease are a family. We care about each other and we share our learnings and experiences. I have learned so much from my KD brothers. And, during my darkest hours, they lifted me up and helped me move forward.

My most important learning was life doesn't end with Kennedy's Disease. It just progresses in a different direction.

Before I end, I need to remind you that a spouse also has a difficult path ahead. The spouse often is the recipient of the anger, frustration and moods of the husband. My wife is my greatest blessing. She is there when I need help. She steps aside when I need to do something for myself; even if it means I will fail. She learned that living with Kennedy's Disease is not just something the husband goes through.

The end of another year

My legs went into a slide in early November. The quads and left knee weakened dramatically. Several times a day I felt the left knee was going to buckle on me. I haven’t experienced anything like this in years. At times it was difficult not to become too concerned about my future capabilities. Compromise and compensation, leverage and innovation—I tried everything I could think of. I was not going to give up or give in.

Some days I could only accomplish 50% of my normal standing leg exercises. I was also finding it difficult to pull up my pants after using the toilet. Several times it took 2-3-4 attempts while having to rest for a moment or two between attempts. Occasionally I had to have my wife help. Frustration and even anger wedged its way into my normal positive attitude. But, I am a stubborn cuss.

I never gave up trying to complete my standing exercises. I pushed myself while always considering my safety. Over time I was able to regain enough strength to perform 80% of my previous reps. A week ago I wrote in my KD exercise journal that perhaps this was the new normal for me, but I still refused to accept it.

This morning when I first stood up I sensed a strength in my legs that I haven’t felt in a couple of months. When I began my standing leg exercises I could feel a difference—a confidence in my leg muscles. Muscle-memory kicked in and I found myself smiling. I performed 120 steps in place without a problem. I then performed 100 standing leg lifts without breathing hard. I was on my way and life couldn’t be any better.

I don’t know what the new year will bring, but I can tell you it is ending in a most gratifying fashion.

Be well and stay upright!

Mule Photo: http://likesuccess.com/topics/6261/stubborn

Happy New Year Photo: http://www.wishespoint.com/

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.  … ”

Why should I exercise?

I just read a post in Goodlife Zen that needs to be shared along with a few personal comments. First, I’ll share a portion of the post and then add my thoughts. You can read the entire article by following the link below.

6Unexpected Ways Exercise Improves Your Mental health

Jack LaLanne, nicknamed the Godfather of modern fitness, exercised until the day before he died at 96. He once said, “Exercise is the catalyst. That’s what makes everything happen: your digestion, your elimination, your sex life, your skin, hair, everything about you depends on circulation.”

… exercise improves their heart rate, pumps more blood to the brain, builds muscles, and of course makes them go from fat to fit naturally.

However, scientists believe that the benefits of exercising don’t just end there. They claim that regular physical exercise can help boost your mental health by boosting your brain function. …

1. Reduces stress

… By improving blood circulation to the brain, exercise boosts the production of norepinephrine, a chemical that regulates stress and improves concentration. So, the next time you’re mentally exhausted or stressed out, just get off your seat and do any form of exercise for a few good minutes. You’ll experience the mental benefits almost instantly.

2. Boosts the production of ‘happy’ chemicals

… Exercise releases endorphins that control feelings like happiness and excitement. … The effects of exercise on your mood can be even more profound than any antidepressant pill or medication.  You don’t have to be a gym rat to reap the benefits of exercise; all you need to do is just sneak in 30 minutes of workout time in your daily routine.

3. Improves confidence and self-esteem

… Having a well-toned body makes you feel good and look good at the same time. The better you look, the more your confidence and self-esteem will be. …

4. Outdoor exercises for Vitamin D

To enhance the experience, take your workout outdoors. No matter how stressed out you’re, spending time in the nature can help relieve stress, and when that’s coupled with exercise, you get superior results. …

What’s more, by soaking up in the sun, your body gets a healthy dose of vitamin D, which is otherwise hard to get via food and packaged supplements. …

5. Boosts brainpower

Laboratory studies conducted on rats and men have proved that cardiovascular exercises help generate new brain cells and eventually result in a healthier brain. It has also been found that exercise fosters brain-specific protein called BDNF which is linked to the decision making, thinking, and learning skills of an individual.

6. Helps control addiction

The brain reacts to any form of pleasure-sensitive stuff like exercise, … … but also help in the recovery and improvement of the person’s physical and mental well-being.

When this article started out with Jack LaLanne, boy did that stimulate memories of my childhood. He was on television every day wearing that body suit.

First off, I do not plan on letting Kennedy’s Disease get the better of me without a fight. And, how I fight back is with decent nutrition, daily exercise, and listening to my body.

I still exercise every day, several times a day. I find it good for what ails me. If I eat too much wheat products and my joints are painful, exercise loosens things up and removes the pain. If my hands aren’t doing what they are supposed to, exercise makes them more flexible and stronger. If I’m having trouble lifting object over my head, exercise provides just what is needed to get the job done.

Below are just a few of the links I posted regarding exercise for those of us living with a progressive neuromuscular condition like Kennedy’s Disease. Do a search (on the right next to my photo) to see all the posts on exercising.

• NewExercise Program – Part I
• NewExercise Program – Part II
• ExercisesCan Improve Your Quality of Life – Part I
•             Part II in this series
              Part III in this series
              PartIV in this series
              PartV in this series
  PartVI in this series
• Exercisingwith light weights is good for you
• Let’sDo Some Exercises

Remember my mantra:  Exercise Good – Couch Potato Bad

Life just isn't fair

Life just isn’t fair.

Why me?

What did I do to deserve this? 

I could go on, but I am just making a point. Sometimes it is easy to become caught up in the victim or martyr complex. Wiki describes the complex as a person who desires the feeling of being a martyr for his/her own sake, seeking out suffering or persecution because it feeds either a psychological need, or a desire to avoid responsibility.

 

And that takes us to today’s words of power.

I am the only person responsible for how I feel

I used to sail a little and loved it. There is a saying, “smooth seas don’t make good sailors.” It means that it doesn’t take a lot of skill to sail in good weather. Where you really learn how to sail is when there is a storm, or little wind, or you lose a sail. 

The same can be said about life. If everything goes along smoothly, we are happy. But the minute something happens that disrupts our perspective on life, we often ask, why me, or say it just isn’t fair. 
  

In the real world, situations outside our norm are what challenge us and force us to learn, to adapt, and if necessary, to change direction. Those of us living with a progressive neuromuscular disorder, for example, learn this early on in life. We first had to overcome the shock of the diagnosis. Then came severe cramping and tremors. After you survived that, next came the tripping, falling and legs buckling, or some other symptom. It seems there is always something new taking place challenging what we just finished adapting to. Because of this, it is easy to feel sorry for yourself or just give up trying. 

When you finally understand that you are responsible for how you feel, life doesn’t get any better. The progression and challenges associated with the disorder continue, but your perspective changes. You still have to get up every morning, you still have responsibilities, you still have family and friends, and you still have a life to live. You are no longer the victim. You do the best you can with the abilities that you still retain. The big difference is that you are happier and so is everyone around you. 

Photo 1: Daily Mail   
Photo 2: Trip Advisor

Regaining Control of your Life

If you are a follower of my blog, you know that I use positive sayings to influence how I live. If I see that I need an attitude correction, for example, I’ll start digging through my notes and books I read until something strikes home.

Living with Kennedy’s Disease, or any progressive neuromuscular disorder, requires regular attitude adjustments or you can find yourself wallowing in the gutter. Thoughts are powerful and can change your perceptions immediately.

Today’s topic is the beginning of my "Words of Power" series. These words are important to me. It helps keep me going, especially when I am a little down.

“My life is controlled by what I accept and believe”

This is a powerful statement. One that forces me to place any blame for a negative attitude on myself. My wife mentioned recently that I never complain. My response was, “Why should I? No one ever listens.” 

Unfortunately, my comment isn’t entirely true. I LISTEN! My subconscious listens to what I think. I don’t even need to verbalize the thought for it to do damage.

For that reason,

“I choose to entertain only positive and nourishing thoughts”

That doesn’t mean something negative or destructive doesn’t try to wedge its way in occasionally. But, when I realize what is happening, I pull out my gratitude journal and just read a few pages of my random thoughts. 

B.K. Clive said it best. ““Today, just take time to smell the roses, enjoy those little things about your life, your family, spouse, friends, and job. Forget about the thorns -the pains and problems they cause you - and enjoy life” 

 

Radical Gratitude

In 2012, I posted an article on gratitude. In the article, I mentioned using a gratitude journal to help recognize moments that you are grateful for. Since then, I mentioned the gratitude journal three other times. I use the journal several times a day to recognize all the good in my life. I have always felt I am a positive person, but there are still times when griping and venting is just too easy of an outlet.

Today I read an article by David Cain on Radical Gratitude. It takes the notion of being grateful to a completely new level. 

“The idea sounds ridiculous, and even hopeless, but in practice it’s quite easy, and immediately rewarding. You just ask yourself, “Can I be grateful for this too?” In my short experience doing this, the brain has a way of coming up with good reasons why yes, you can.

This practice reveals a lot about our shortsightedness. We have a rather ridiculous tendency to believe everything is either strictly good for us or bad for us, and that we can reliably determine which one it is, in the instant that thing happens.”

I would encourage you to read the article by Mr. Cain. I plan to implement the idea and see what happens. In fact, this afternoon, something happened that I wasn’t too happy about. The minute I noticed my feelings of ‘this is bad’, I commented, “Wow, I am grateful for this happening because …” Just saying that changed my disposition, and, in turn, my outlook on the event.

I will probably fail several times a day trying to implement this new ‘radical’ way of viewing my world, but failure isn’t so bad. It opens the door to a greater understanding of what works and what doesn’t work. Yet, the idea is so contrarian as to how I currently operate, it will be interesting to see the results.

Photo: http://everydaygyaan.com/