Thursday, March 31, 2011

An update on two recent changes in my life


It seems like many moons ago that I reported that I bought a Honda minivan with the VMI system.  I was hoping it would be a good buy, and I can say today … YES, it was.

2007 Honday Odyssey

The VMI system is well thought out, convenient and very easy to use.  I have felt a new sense of freedom since the purchase.  I go places today by myself that I would normally waited until my wife could go with me.  I am once again running errands and going shopping without a second thought.

Probably the only negative is that certain parking spaces are not large enough for the ramp to be extended out for easy access.  Only once has this been an issue, however.  I just have to be a little more observant.

For now I consider it a “best buy” and give it a … thumbs up


It has been 45 days and I have not seen any negative side effects.  I have noticed some positive ones, however.  Far less fasciculations as well as less muscle spasms and aches are three that stand out every day. 
I also appear to have more stamina and more consistent strength.  Could this be a coincidence?  Possibly, but whatever it is I sure enjoy it. 

My long exercise programs run 65-75 minutes and could actually go longer these days.  The number of reps and slightly increased weights have not been an issue.  Very rarely do I feel weak after a series  of  reps. 

Yes, that crud that I caught a week ago last Friday really took its toll on me, but I bounced back ‘strength-wise’ very quickly.

For now, I give it a …thumbs up

Tuesday, March 29, 2011

I was afraid to ask for help?

This topic brings back many memories of my working days.  Yes, I was one of those that was afraid to ask for help or let anyone know that perhaps I could not do what was asked.  And, because I was afraid to admit that I was physically challenged. others did not feel comfortable asking if I needed help.

Dr. John M. Grohol, PSYD, comments:  “I think the number one reason why people don’t ask for help is simply fear. Fear that others will judge them for seeking help, fear that others will see them as weak or damaged. This fear is the same kind of fear that holds many people back in their lives.

But fear, like any emotion, can be overcome. It takes effort and work, but if you conquer this fear, you can seek out help and improve your life or situation.”
help note

Back then, I was not giving in to this disease.  For the life of me I did not want anyone to know that I was incapable or uncomfortable with doing something.  And, boy, did I pay the price.  Falls, injuries, broken bones, torn suits and dress pants, and sitting on the sidelines while others had fun were just some of the results of not being able to swallow my pride.

Author Audrey Kinsella discusses her situation in a story she wrote.  “While being independent is good, resisting asking for or accepting help isn’t always productive.   Life really can be made more comfortable by accepting help from others.”
Inspired by her personal battle with rapidly progressive multiple sclerosis, Kinsella admits that as an independent individual who was once the person offering help, accepting assistance was quite a difficult and humbling experience.  “I gritted my teeth,” she says. “For years, I never asked for help.”
“Learning to give and take is a two-way street,” says Kinsella. “But learning to navigate that street can really add to the quality of life. Learn it and move on.”
Can I relate to her last comment.  I have written about it before in several articles, but it still amazes me how much personal grief I put myself through during those years.  I remember my wife asking me dozens of time “WHY DID I JUST NOT ASK FOR HELP?” 

Help - strong ones

There is an article in eHow titled “How to Ask for Help.” 
    1. Know to ask for help before frustration and anger take over. This is the first and most important step. 
    2. Leave behind feelings of shame and embarrassment. Just because you're asking for help doesn't mean you're a failure. It's actually wise and a very successful strategy because it will save stress and time.
    3. Talk to someone who you're close to--like a friend or family member--if you're feeling a bit intimidated asking for help. Maybe they can point you in the right direction.
    4. State clearly what it is that would be helpful and be specific. People generally want to help they just need to know exactly what is expected of them.
    5. Say thank you. Always be grateful and appreciative when someone has done something to help.

    Rules #1 and 2 above should have been sitting on my desk back then.  And, yes, it is easier to ask a friend or relative for help than to ask someone at work.  Explaining clearly what specifically you need help with also makes the process much easier.  “I can do this, but I just can’t seem to do that …” lets the other person know you just need a little help in certain areas.  And, most importantly, always say THANK YOU. 

    Inner-strength comes from self-confidence and self -awareness.  It is knowing your limitations.  It is also recognizing the strengths and capabilities of others.  As the poster says above, “The strong ones ask for help.” 

    Sunday, March 27, 2011

    Everything in our life has a purpose

    Many years ago I read an interesting book by Elisabeth Kubler-Ross called, “On Death and Dying.”  It was a ground-breaking book for me because it introduced the Kubler-Ross Model, more commonly known as the “five stages of grief.”  I converted these stages in earlier articles to the stages of the acceptance process because I believe they apply to all traumatic events in a person’s life including learning that you have an incurable disease.

    Wikipedia explains the stages of the process:
    1. Denial—"I feel fine."; "This can't be happening, not to me."
      Denial is usually only a temporary defense for the individual.
    2. Anger—"Why me? It's not fair!"; "How can this happen to me?"  Because of this anger, the person is very difficult to care for.
    3. Bargaining—"Just let me live to see my children graduate."; "I'll do anything for a few more years."  The third stage involves the hope that the individual can somehow postpone or delay death.
    4. Depression—"I'm going to die... What's the point?"  During the fourth stage, the dying person begins to understand the certainty of death. This process allows the dying person to disconnect from things they love.
    5. Acceptance—"It's going to be okay."; "I can't fight it, I may as well prepare for it."  In this last stage, the individual begins to come to terms with his mortality or that of his loved one.
    Five stages

    Kübler-Ross originally applied these stages to people suffering from terminal illness and later to any form of catastrophic personal loss (job, income, freedom, health).

    Three good quotes from Kübler-Ross

    I find it even more interesting today what Kübler-Ross said about the process of living and dying.  Here are a few of her quotes that struck a cord in my life.
    • "Learn to get in touch with the silence within yourself and know that everything in this life has a purpose, there are no mistakes, no coincidences, all events are blessings given to us to learn from." [If you follow my blog, you have heard me express similar comments.  Viewing certain negative events as a potential blessing is often difficult.  Attitude plays an important part in this transformation of thought.  My introduction on the top right discusses this learning process.  Once we understand that we are here on this earth to learn and to love, resentment, anger, and frustration begins to play a much smaller role in our lives.]
    • "It's only when we truly know and understand that we have a limited time on earth - and that we have no way of knowing when our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.[I saw this transformation take place with my father and a few other people that were important in my life.  There ‘light from within’ really started to show because priorities changed dramatically and minor irritations and annoyances were no longer important.  They began to ‘live in the moment’.  My dad and I had some great conversations about priorities during this phase of his life.  I just wish I had been a better listener.]
    • "The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.[WOW!  How can I add anything to this quote except to say that we have all know beautiful people like this.]
    Thankful cards

    As I mature, I have found that gratitude is now a very important part of my life.  Being grateful for what I have is a daily, often hourly, realization.  Yes, it is centered around the love of family and friends, but it extends so much further and is intertwined in almost every aspect of my daily life.

    I give thanks dozens of times each day and often for the simplest of experiences. 
    • Watching a baby turtle break free from its shell and start its trek towards the lake. 
    • Observing Blue Bird parents teach their chicks how to survive in their world. 
    • Snuggling with our cat, Willy, because he just wants a little TLC. 
    • Being greeted each morning by our dog, Fred, who believes this moment together just has to be the greatest time in his life since his last meal. 
    • Watching the faces light up of our neighbor’s grandchildren when they see Fred and I coming to see them. 
    • Holding hands with my wife.
    • Or, receiving an email or call from my daughter or son.
    Being thankful-sunrise

    Yes, I have an incurable disease.  And, yes, my strength and vitality are being taken from me.  But, I have so much to be thankful for because I am alive and I am loved

    Thursday, March 24, 2011

    Self-Discipline: The key to positive change in your life

    I am often asked how I went over three years without missing a day of exercise.  Sometimes the question sounds more like, “Are you obsessive-compulsive?”  Or, “Are you crazy?”

    I am not certain if I am obsessive-compulsive.  And, please don’t ask my wife if I am crazy.  I believe I have an ability to focus on a goal and remained focused until the goal is achieved.  This focus allows me to motivate myself.  Perhaps you could call it ‘self-discipline’.

    Don’t get me wrong, I have not mastered the technique.  I still fumble the ball in many areas of my life.  Developing self-discipline does not come easy nor is it usually fun.  Yet, the rewards are worth it because you are in charge of your life.

    There are several good sites on the internet that provide useful tips.  Below I have provided some information and examples from a few sites.  But, first, let’s remind ourselves what ‘self discipline’ means:

    Self-Discipline is the ability to get yourself to take action regardless of your emotional state.”  

    self-discipline - being talked to

    The key message here is “regardless of your emotional state.”  If you are tired and would rather sleep in then get up for that morning walk, who has won?  Who is in control?  Are you really better off because you slept in or do you feel drowsy and find it difficult to get motivated the rest of the day?

    There is a good study guide on the subject called, Developing self-discipline.

    The guide says that “Self-discipline can be considered a type of selective training.  It creates new habits of thought, action, and speech that improve yourself and help you reach your goals."  It also comments that you need to view self-discipline as positive effort, rather than one of denial.

    The guide also discusses how to “Harness the power of routine.”
    • “Instead of devoting a lot of time on one day, allocate a specific time period each day of the week for that task and hold firm to the schedule.” [For example, I exercise every morning at the same time.  Certain days I have a 65-75 minute routine while the in between days I just exercise 15-20 minutes]
    • “Don't set a goal other than time allocation.  Simply set the habit of a routine.”
    “Advantage:  You are working on tasks in small increments, not all at once.  You first develop a habit, then the habit does the job for you.

    It also recommends that you keep some kind of daily journal or log book to record the start and end times of the task and any progress you noted.  Then it says to review the journal regularly.

    “Advantage:  This log book can be a valuable tool to get a better picture of your activities in order to prioritize activities, and realize how you spend your time.”

    How to Build Self-Discipline is written by Peter Clemens offers some good advice on the subject also.

    Peter comments that “Discipline is freedom. You may disagree with this statement, and if you do you are certainly not alone. For many people discipline is a dirty word that is equated with the absence of freedom. In fact the opposite is true. As Stephen R. Covey once wrote, “the undisciplined are slaves to moods, appetites and passions”.

    self-discipline - choice

    “Self-discipline involves acting according to what you think instead of how you feel in the moment. Often it involves sacrificing the pleasure and thrill of the moment for what matters most in life. Therefore it is self-discipline that drives you to:
    • Work on an idea or project after the initial rush of enthusiasm has faded away
    • Go to the gym when all you want to do is lie on the couch and watch TV
    • Wake early to work on yourself
    • Say “no” when tempted to break your diet”
    Understanding The True Definition Of Self Discipline is another good article on the subject.  It is written by Frederic Premji.

    Mr. Premji reminds us that … most people … believe that they eventually will start liking whatever it is that they are doing, and when that doesn’t happen, they go back into their comfort zone, and give themselves all kinds of excuses as to why it didn’t work out.

    “Here’s your wake up call:  Self discipline is doing something even if you hate it or don’t feel like doing it.”

    Self discipline is like a muscle.  “The more you exercise it, the more you get used to it, and the further you can push yourself. I usually recommend my clients to start with something small, just to get their feet wet, and to get used to the idea that doing something that you don’t want to do, or that you will never like, is OK!  Then, over time, you can gradually add more to your list of things to do that you don’t particularly like. “

    self-discipline - waterfall

    “Keep in mind that you will probably never enjoy doing it, but that if you keep on doing it, the rewards that you will reap will be far beyond the measly little satisfaction that you get by not doing it in the first place.”

    Well, I hope you got as much out of these article excerpts as I did.  The writers made me feel a little better now that I understand that I do not have to like what I am doing, because sometimes I still don’t.

    Tuesday, March 22, 2011

    Personal observations during recovery

    I am almost healed and it feels good to be among the living again.  Since I started taking Dustasteride, I have been keeping a journal.  I reviewed it today and these are some of my observations about the last five days.

    1. Saturday I missed my first day of exercises in over three years … just too weak.  And, I had to move my long program from Monday to this morning because of weakness and an upset stomach.  I really missed my exercise routine.  I knew I had to “get back on the horse” this morning and fortunately I could.  By this afternoon, I noticed some muscle soreness. 
    2. Fasciculations increased dramatically for some reason.  The facial and hand tremors were the most obvious.  I will have to ask my neurologist if he is understands why.  I still have more noticeable twitching in the arms and hands today.
    3. Leg and abdominal muscle weakness was the most pronounced.  My ability to stand up from a chair and my balance were the most effected.  I am assuming that the legs are weaker because they are carrying 180# of weight.  Why would the abdominal muscles be so weak?
    4. I noticed a greater weakness in the left side of my body.  I know that muscle weakness is asymmetrical in those of us living with Kennedy’s Disease.  I question why the left side when my dominant side is the right?
    5. During my long exercise program today, I noticed my upper body strength today was very good … perhaps 90% of normal while my lower body was still 70-75%.  Abdominal strength is somewhere in between.
    6. Because of the wasting of the facial and upper body muscles, I look much thinner after only a few days of not, or only lightly, eating.  Two neighbors commented that I looked thin or asked if I was dieting.
    7. My wife takes far better care of me than I do.  Saturday I ate like I was well again (a cheeseburger, ice cream, and shrimp pasta with garlic-butter sauce).  Come Saturday night and Sunday, I paid the price the price for overindulgence.  When my wife took control of my wellbeing I quickly began to mend.
    caregiver log
    I am perhaps over-analyzing this, but I find it interesting.  I also hope to learn from my mistakes (that would be a first).

    Sunday, March 20, 2011

    I tend to forget …

    I am a fairly healthy person.  I hardly ever get sick and fortunately have not had any serious illnesses.  Because of my good health, I occasionally forget what happens when I do come down with something.  Like all things in life, if you forget you will be reminded again, and even again if necessary.

    Friday morning I woke up with some aches and fasciculations.  I thought that was unusual because since I started taking dutasteride the aches and twitching have been relatively minor.  As I prepared breakfast, I noticed my left arm was very weak.  Initially, I blamed my old friend, Kennedy’s Disease.

    weak feeling

    My 65 minute exercise program went well, so I put aside the aching and twitching and went about my business.  By early afternoon my neck, shoulders and legs were aching … almost painful.  And, even though it was 80 degrees, I felt chilled.  I was wearing a sweater and had a blanket over me and still could not stay warm.  By dinnertime my stomach was upset and I was applying heat to the shoulders and neck.  Pressure (gas) built up in my chest and abdomen.   I could hardly stand up  from my chair by early evening.  I went to bed early, but could not sleep.  My fever broke around midnight.  If I had an hours sleep that night I would be amazed.

    The next morning I could not sit up in bed.  I was just too weak.  I could not get any food down so I sipped on Coke and 7up throughout the day.  The pressure in my abdominal area was still very intense.  Fortunately, March Madness was on TV and in between my constant napping I was able to watch some of the games.  By evening, I got a half a bowl of soup down … my first food in over 26 hours.  Extra-strength Gas-X also seemed to help.

    sick face

    Last night I had a good nights sleep and woke up feeling a lot better this morning.  My stomach is still telling me with its gurgling and rumbling that I am not totally well, but at least the aches are gone.  Breakfast tasted good this morning ... food at last … wonderful.

    I am maybe 50% recovered today, but I am definitely on the mend.  I did a light workout this morning and it felt pretty good, but I could tell I was still weaker than normal.

    Because those of us living with Kennedy’s Disease are already weakened, any normal illness can cause us more problems.  It is a reminder that I need to be cautious when out in public.  I cannot afford to be exposed to colds, the flu, and other transmitted viruses and bacteria.  Any illness that weakens a normal person can become detrimental to someone with Kennedy’s Disease.

    germ farm

    My mother always said:
    • Wash your hands often. 
    • Keep your fingers away from your eyes. 
    • Never shake hands with anyone when you are not feeling well.
    She was always a little smarter than me.

    Be safe and healthy!

    Thursday, March 17, 2011

    Exercise the brain as well as the body

    In Humana Active Outlook there were two articles that I found interesting.  For those of us living with Kennedy’s Disease, I feel it is important to exercise … to stimulate the motor neurons regularly in order to maintain muscle strength.  The first article discussed another important form of exercise.


    “Your Beautiful Brain” was written by Kelly Traver, M.D., and Terri Smith.  The article initially says that your brain like for you to continue to do what you are already used to doing.  It does not like drastic change.  Making slow, gradual, easy changes and sticking with them is the key.  Taking small steps over a long period of time is easier for your brain to digest than one major change.


    Your brain is:
    • Adaptable:  It can change.  At any age you can learn, grow, and improve.
    • Resistant:  Although it can change, as mentioned above, it is set in its ways and dislikes change.  Studies of brain scans suggest that any big change in your life causes a ‘stress response’.  Yet, there was little ‘stress response’ for incremental change.
    • Rational:  Your brain likes to solve problems.  It likes puzzles and riddles and enjoys being stimulated.  Any activities you enjoy triggers the pleasure centers within the brain.
    • Emotional:  When you are stressed, sad or worried, these emotions work against your health.  In fact, 90% of the information used in your decision making process comes from your brain’s emotional center.  This is why it is important to do things that have a positive effect on your mood and to keep negative stress out of your life.
    Work the brain

    “To be in the driver’s seat of your health means you must learn to be in the driver’s seat of your brain.  Get creative and set short-term goals that are right for you.”

    You also have to recognize that failure is part of the learning (and change) process.  The key is to not be afraid to fail.    Remember Edison and Franklin’s failures, for example.  They all led to significant discoveries.
    Dr. Traver ended the article with this comment:  “Lifestyle behavior accounts for 50 percent of one’s health, 50 percent of the total cost of healthcare, and 50 percent of the total causes of death.” 

    The second article focused on the importance of combining a program of eating better with regular exercise.


    “Nutrition and Exercise Basics” was also written by Dr. Traver and Ms. Smith.  It was an excellent ‘common-sense’ article about smart choices in your life.

    fiber for health

    They suggest three simple rules for getting to a healthy weight:
    1. Eat smaller amounts in order to lower your calories, lose weight, or maintain your current weight.
    2. Choose whole-grain, high-fiber, and unprocessed whole foods (in their most natural state).
    3. Choose good over bad fats.  That means choosing unsaturated, plant-based fasts most of the time.
    “Simple Exercise Smarts”
    • Exercise is as close to the fountain of youth as anything we have found.  Aerobic exercises keep your heart, lungs and muscles strong.  Stretching keeps your muscles and tissue flexible and healthy.
    • If you exercise regularly, you can stay healthier and more active longer.
    • Exercise can actually increase a chemical in your brain that stimulates growth and health.  You can lower your risk of dementia through regular exercise.
    What does this all mean for those of use living with Kennedy’s Disease.  Eating better and regular exercise, whether mental or physical, will help keep us healthy and stronger longer.  We might not be running any marathons or competing on Jeopardy, but we can “still be in the race.”

    Tuesday, March 15, 2011

    Feeling Overwhelmed?

    Kennedy’s Disease not only impacts the body, it also works on you mentally and emotionally.  Occasionally, a person can feel overwhelmed.  When this happens, other health concerns might appear including loss of sleep, appetite and energy as well as difficulty thinking straight.  Most of us living with Kennedy’s Disease have had moments of self-doubt and frustration.  Fear and anxiety are also common emotions as we work towards acceptance. 


    When any of the above health issues appear and remain for more than a week or two, it is important that you contact your doctor because these symptoms could lead to other health concerns. 

    In this month’s Humana Active Outlook magazine, Andrea Gollin discussed “When the Doctor’s News is Not Good.”  In this article Ms. Gollin and Jane Thibault, MA, MSSW, Ph.D. at the University of Louisville School of Medicine, discuss how bad news from your doctor can impact your health. 

    Ms. Thibault stresses that there are many strategies that will help individuals find their way through an illness.  She explains that “when people are sick (or have been diagnosed with an incurable disease), there is often a loss involved – a loss of their former state of health.  People go through a grieving process, which varies depending upon the person and their situation. … You go back and forth through different stages, depending upon what is happening with your health at the time.”

    The stages include:
    1. Shock and denial
    2. Pain and guilt
    3. Anger and bargaining
    4. Depression, reflection, and loneliness
    5. An upward turn
    6. Reconstruction and working through
    7. Acceptance and hope
    Ms. Thibault explains that often a person might go through some of these stages several times as medical complications and setbacks happen.

    She advises that the best way to cope is to “try to keep as normal a lifestyle as possible, but don’t overdo it.”  She also recommends supporting yourself as much as possible in the following core needs.
    • Protect and nurture your body – be responsible to yourself.  (Take care of yourself by eating right, quit smoking, exercise appropriately, etc.)
    • Love and be loved – caring for relationships and family members, friends, the community and your pets. (Develop and maintain a support system)
    • Have a place in society – continue your normal activities and volunteer to help others.  (Do not isolate yourself from the world)
    • Be connected to a cause – or something greater than yourself.  (Focus on something important where you can help make a difference)
    I would add to the list above … maintain a hobby.  And, hobbies that involve others are especially helpful.


    Ms. Thibault concludes by saying, “Any kind of illness challenges your ability to do the things you need to do.  The more core needs you maintain and nurture, the better off you’ll be.”

    The key is to not allow these thoughts and emotions to control your life.  The more time you are involved in things that you enjoy and spend time with people you love, the less time you have to worry.  Distractions, as long as they are positive ones, help free your mind and emotions.

    Sunday, March 13, 2011

    The point of the journey …

    I have this quote on my desk that is so appropriate for my current quest.

    “The point of the journey is the journey itself, not the results.”

    Underneath that quote is another great one by Bernice Johnson-Reagon.

    “Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.”

    I feel that Kennedy’s Disease is a wakeup call for me.  I was skating through life and no matter what the challenge, I could overcome it.  It just took some effort: 
    • Setting short and long-term goals
    • Combine the goals with patience and practice
    • And then keep focused on the prize
    weight lifting - arm exercises

    Unfortunately, Kennedy’s Disease did not seem to want to cooperate.  Initially when I was first began to see some symptoms, I did the most natural thing for me … exercise harder and longer.  It worked in the short term, but in the end it did more harm than good.

    tai chi

    When that didn’t work, I started practicing Tai Chi.  It was great, but Tai Chi could not slow the progression. 

    After that I tried macrobiotics (my wife was involved with this at the time).  It changed me for the better, but the disease still progressed.

    Qigong Medical

    Then Qigong was recommended and I dove into that practice.  Qigong was the best activity that I have ever engaged in.  It changed my life in many ways.  Even though it worked wonders and is something I still practice today, the progression continued.

    Each activity was entered into with one thought in mind.  I was trying to find that elixir that would miraculously change my DNA.  In the process of experimenting with these different practices I began to notice a flaw in my thought process.  I was trying to change something, because I could not live with the thought that I could not overcome (defeat) this flaw … this mutation … in my body’s makeup.

    Androgen Receptor with KD

    Most interesting to me was that I took up these practices mainly because I wanted to see a change.  Not positive change in general, but rather a change in this DNA defect.  In the process, however, my entire life improved in many ways.  I was discovering “who I am”.

    Thursday, March 10, 2011

    The first steps in my quest

    My self-discovery quest begins today. 

    A.  First I need to ask some fundamental questions to become grounded.
    • Who am I?  question in cloud
    • What is my purpose in life?
    • What would I do if I knew I could not fail?
    • What is holding me back?
    B.  After I have done a little soul-searching, next I need to review “The Agreements” by Don Miguel Ruiz.
    1. Do not take anything personally.  Nothing others do or say is because of you.  It simply reflects their own life experiences and the training they received as children.
    2. Do not make assumptions.  Find the courage to ask questions and express what you really want.  Communicate clearly and do not become attached to preconceived ideas of what should happen.
    3. Always do your best.  Then, never second-guess or look back with regret.
    All three agreements are important, but “not taking anything personally” will change my life.  When I take something personally, I feel offended and my natural reaction is to defend my beliefs and ideas.  This creates conflict. 

    Live without fear by trusting that I am making responsible choices.  If I maintain a positive, loving attitude there is no room for negative thoughts and emotions.

    And, most importantly, give myself permission to be happy and to enjoy life.

    anger management

    C.  When anger or frustration appears in my life …
    1. Before reacting, breathe correctly for sixty seconds.  Breathing will relax me and give me time to think things through and not just react.
    2. Ask these questions.
      1. Is it really important?  Will it be important in a week, month or year?
      2. Is my anger or frustration appropriate?  Perform a cost/benefit analysis by asking if getting angry is going to buy me anything?
      3. Can the situation by modified (changed) by looking at it differently or asking for help?  Give myself permission to ‘let it go’ (not become involved).
    3. Consider all the options.  Not everything can be fixed.  Is it worth taking action?  If yes, what would be the appropriate action?
    4. If action is necessary, take the time to organize my thoughts.  Always think things through before acting.
    Okay, I have some work to do.  Thanks for listening.

    Tuesday, March 8, 2011

    My Quest

    Quest:  A search or pursuit made in order to find or obtain something.

    Several times over the last couple of years I have written about my journey of self-discovery.  My quest actually began in the ‘70s’.  I felt a void and began asking myself, “Who am I?”  “What is my purpose in life?”

    At the time I was into Maslow’s Theory concerning man’s  Hierarchy of Needs.  I have written about Maslow in an earlier post.  In brief, he believed that man (in the broad sense – humankind) was a seeker.  That there was a natural (instinctual) nagging inside of all of us.  That nagging tells us “there has to be more.”

    The concept follows that before a person could consider any higher needs, he/she had to feel comfortable with the current situation.  To me, living with Kennedy’s Disease is something we have to feel comfortable with before we can move on.  It becomes a major part of our acceptance process.

    In September 24, 2009’s article I explained why I started this blog. 

    I feel the process of 'accepting' (living with and not fighting) Kennedy's Disease is not just something that happens. It is a learning process. Acceptance does not bring happiness or comfort. Instead, 'acceptance' means you are now able to acknowledge, understand, and deal with the reality of the situation. With acceptance, life can once again begin to move forward.

    I went on to say, If I shortened this post to one sentence, it would be, "I believe that part of my process of learning to live with (accept) Kennedy's Disease is to help others going down the same path."


    Maslow also indicated that man is inherently lazy (my term).  Once he/she had achieved a certain fulfillment of needs, he/she felt comfortable in wallowing around in (enjoying) this new world.

    I am a wallow’r.  Throughout my adult life I would reach a point where I was quite comfortable and took the time to enjoy it.  And, like the theory explains, at some point I find it is just not enough and I again ask, “Who am I” and “Is this all there is?” 

    It usually takes a ‘kick in the butt’ to make a person realize that there “has to be more.”  My most recent and constant ‘kick’ is Kennedy’s Disease.  Every time I become accepting of my current condition, it changes (strength declines).  I feel this decline is another reminder (wake-up call) that my focus has been on the physical and psychological aspects of my life (i.e., living with Kennedy’s Disease) and has drifted away from my real quest of self-discovery. 

    soul searching

    I have to once again accept that “my world (current reality) is a result of my thoughts and beliefs.  My only limitations are those that are self-imposed (doubts, fears, perceptions, etc.). 

    The ‘stepping stone’ that I am currently standing on (*) has become too comfortable.  I have hesitated … and not tried to take the next step.  I am realizing that my focus has been on the acceptance process for too long and not on “what is next.” 

    I need to take that next step.  In other words, it is “soul-searching” time again.

    (*)  These stepping stones are my life’s path.  I mention them in my header article (top right of this page), “We all have to learn to live with Kennedy’s Disease.”

    Sunday, March 6, 2011

    Disability Information and Resources

    One question I am often asked is where do I find information on benefits available for someone disabled.  Today, we are fortunate that we have access to the internet.  Almost any information or forms you need can be found ‘in the cloud’.  Below are a few examples of websites that provide information for those living with a disability.

    internet connection

    Social Security Online has an entire section on Disability Benefits for People with Disabilities. Within this section there is information about:
    Also, is a good site that covers a variety of questions about programs available including military benefits.  It also has links to other sites and documents.

    Another excellent resource is the Americans with Disabilities site.  The ADA has developed comprehensive resources concerning your rights, regulations, and programs available.  There is also several links to other government programs that provide resources or benefits for the disabled.

    disabled worker

    I hope you never have a discrimination issue because of your disability, but just in case the EEOC website is a good resource for issues regarding this subject.

    The Department of Labor’s website, Office of Disability Employment Policy, is a place to help people with disabilities to find employment opportunities.

    The Job Accommodation Network has information on ways to help a disabled person continue to work.  It works to benefit both employers and employees by providing practical solutions to common problems.  The ‘A-to-Z Listing if Disabilities and Accommodations’ is very good.

    A website I have not used, but appears to have a good deal of information is called Disability Secrets .  It has information on a variety of disability subjects including Social Security and Workers Compensation.  Since it is a non-government site, I am not certain how or whether it receives compensation other than through advertising.

    If you know of other sites that are also good resources, please let me know and I will post them.

    Thursday, March 3, 2011

    Developments in my exercise program

    Over the last couple of weeks I have been taking dutasteride to see if it will help slow the progression.  I know it is too early to tell, but I have been noticing something interesting happening this last week and I wanted to share it with you.

    I am experiencing a sensation that I have not felt for many years.  It might not be related to the dutasteride and it might be just coincidental, but it is interesting.

    Exercise 4

    The feeling I am talking about is a tightness in certain muscles.  The kind of tightness that comes when you have exercised muscles that you have not used for some time.  This tightness is not a cramp or an ache.  It is also not the sensation of weakness you get when you overuse your muscles.  The best description I can give this tightness is an awakening of muscles.

    My Monday and Wednesday long workout routine (between 65-75 minutes) were quite good.  My shoulder exercises (four routines) are much easier.  I have increased the number of reps by 50-to-100% without any problem.  Then, for several hours afterwards I feel ‘pumped’.  The other interesting aspect is that I am not experiencing any unusual twitching or fasciculations.  If anything, the fasciculations have decreased. 


    I have been cautious to not-overdo.  At the same time I want my body to tell me when to quit a particular exercise.  These last few days, however, I had to tell myself to discontinue a particular exercise.  It is a nice feeling to not be forced to quit.

    Coincidence or not, I am liking this feeling.  I’ll keep you appraised of any further developments.

    Tuesday, March 1, 2011

    Slowly breathe in … exhale … relax

    Most of my regular readers know that I am not a patient person.  I work on it all the time, but sometimes I fail miserably.  I also know that frustrations cause stress and that exacerbates the weakness we already experience.

    There are a few things in life, however,  that really push my buttons.  Buggy software … misleading information … packages that are not meant to be opened by mere mortals … and, the one annual event that was personally designed to cause me pain and suffering.  I am referring to filing income taxes.


    This process causes my blood pressure to rise, my neck muscles tighten and my head to pound.  I have prayed for a flat tax or even a simplified tax … or, at the very least, instructions that are understandable to the average “Joe’.  Yet, every year, come February and early March, this event takes it toll on me.

    We use Turbo Tax software and that helps.  My wife spends days ahead of time preparing the information and that really helps.  Yet, for all the preparation and the guidance of intuitive software, the task always ends up at a stalemate.

    Something does not make sense or cannot be added where it should go.  Or, some rule or instruction is poorly written.  It always seems to be something that brings the entire process to a standstill.  Online searches and even calls to the IRS do not leave you with a ‘warm and fuzzy feeling’ that you now have the right answer.  FRUSTRATION!!!!!


    Over the last two days I have had to call a ‘time-out’ three times to just get away from the project.  I know, the simple answer would be to hire a tax consultant.  That is not my wife’s way, however.  She is meticulous in anything that she does and feels more confident in her own abilities than a tax preparer.

    Sitting here writing about it helps.  A sh0rt meditation break helps.  Taking my dog out for a walk helps.  Just walking away for a couple of hours also helps.  Yet, until my wife has given the document her seal of approval (every ‘i’ is dotted and ‘t’ crossed), the annual process wears on me.

    When will I learn to just:
    • close my eyes …
    • breathe in slowly … exhale …
    • relax …
    • think of peaceful, loving thoughts …
    • see the beauty of spending time with my wife …
    • and, be thankful that we make enough money to pay taxes

    Okay, I feel a little better.  It is time to get back to work on those taxes.  Thanks for listening.