Monday, May 30, 2016

Decoration Day - Lest we forget

The history of DecorationDay, or as it is more commonly known, Memorial Day 
Three years after the Civil War ended, on May 5, 1868, the head of an organization of Union veterans — the Grand Army of the Republic (GAR) — established Decoration Day as a time for the nation to decorate the graves of the war dead with flowers. Maj. Gen. John A. Logan declared that Decoration Day should be observed on May 30. It is believed that date was chosen because flowers would be in bloom all over the country.

The first large observance was held that year at Arlington National Cemetery, across the Potomac River from Washington, D.C.

The ceremonies centered around the mourning-draped veranda of the Arlington mansion, once the home of Gen. Robert E. Lee. Various Washington officials, including Gen. and Mrs. Ulysses S. Grant, presided over the ceremonies. After speeches, children from the Soldiers’ and Sailors’ Orphan Home and members of the GAR made their way through the cemetery, strewing flowers on both Union and Confederate graves, reciting prayers and singing hymns.

We decorate “lest we forget” that these men and woman fought for our freedom

Sunday, May 29, 2016

Habits; curse them or love them

A habit is a regularly repeated routine or behavior. The majority of our habits occur subconsciously. For most people, good habits are difficult to form and bad habits are even more difficult to break. 

I smoked for several years in the late teens and early twenties. When I woke up in the morning, the first thing I did was reach for a cigarette. As soon as I sat down in my car, I reached for one. After every meal, I reached into my shirt pocket for one. Even a year after I quit smoking, I would automatically reach towards my shirt pocket after a meal. The imprint of reaching for a cigarette was there long after the nicotine urge was gone. Nicotine was the addiction, but unconsciously reaching for a cigarette was the habit.

Wikipedia discusses habit formation in this way.

Habit formation is the process by which a behavior, through regular repetition, becomes automatic or habitual. This process of habit formation can be slow. Lally, et al, found the average time for participants to reach the point where it is an actual habit was 66 days (with a range of 18–254 days).
As the habit is forming, it can be analyzed in three parts: the cue, the behavior, and the reward. The cue is the thing that causes the habit to come about, the trigger of the habitual behavior. This could be anything that one's mind associates with that habit and one will automatically let a habit come to the surface. The behavior is the actual habit that one exhibits, and the reward, a positive feeling, therefore continues the "habit loop". A habit may initially be triggered by a goal, but over time that goal becomes less necessary and the habit becomes more automatic.

The key to changing habits is to identify your cue and modify your routine and reward.

Not all habits are bad. My daily exercise program is a good habit. Every morning I exercise before breakfast. If something happens that throws my routine off, my subconscious nags at me until I take the time to exercise. My reward is how I feel afterward.

And, the easiest way to quit a bad habit is to replace it with a good one. 

My words of power for today are:
I only embrace good habits

So how does one get started in eliminating bad habits?
  1. Identify: You start by identifying your habits’ cues and rewards. What cues you to perform the habit? What is your reward? 
  2. Determine: Next, decide on the bad habits that need to be broken. Ask yourself why this habit needs to be eliminated.
  3. Prioritize: Only focus on one; the one that will provide the greatest benefit if broken. For example, between meal snacking might have helped put thirty extra pounds on you.
  4. Reward: What is the reward you will receive if you change the habit? There has to be a reward or goal established, or there isn’t a reason to break the habit. For example, how proud your daughter will be when you walk her down the aisle at her wedding. 
  5. Cues/Reminders: Initially, you will need to cue yourself—remind yourself what you are trying to accomplish. Write yourself notes, schedule time in your daily planner, stop buying something, or leave out something as a reminder. 
  6. Track Results: Every day you succeed in breaking the habit, pat yourself on the back. Write it in your journal or on a chart. If you are losing weight, for example, track the weight loss.

And always remember to …
Embrace your good habits

Tuesday, May 24, 2016

Accessible Air Travel

For those of us living with a progressive disorder, accessible air travel becomes more of an issue over time. My last job required quite a bit of travel in the United States and Canada. Long lines, the distance to the gates, waiting, changing planes, more long lines, the distance to baggage claim—I think you get the pointhad me worn out even before I even visited out customers, warehouses and mills. And, I'm not going to even mention the plane's tight seating, and bathrooms.

Once I had a nasty fall while exiting a plane. More than once I fell because of fatigue after arriving at the destination. In short, airlines are really not set up to accommodate those of requiring special needs when traveling.  

The update below from the MDA shows that some progress is being made in this area.

Accessible Air Travel Update

MDA has been working closely with a diverse set of stakeholders that include policy makers, advocate groups, industry and MDA families to support increased accessibility to air travel.  Thank you to everyone who contacted your U.S. Senators to urge their support for the disabled passengers provisions contained in the Senate version of the FAA reauthorization bill.  These provisions would call for 1) studying the use of in-cabin wheelchair restraint systems, 2) identifying best practices in airport accessibility, 3) examining training policies regarding assistance for disabled air travelers and 4) creating an advisory committee with diverse stakeholders to investigate and report to Congress on the needs of passengers with disabilities.

The bill passed the full Senate with overwhelming support (vote 95 to 3) - with allfour of the disability provisions intact.  Two amendments pertaining to enforcement of the Air Carrier Access Act were offered, but were not included in the final version of the legislation.

The next step is for the U.S. House to take action.  We will follow up with additional information on how you can take action as the legislative process moves forward.  Additionally, the Department of Transportation (DOT) recently convened the first meeting of the Accessible Air Transportation Advisory Committee (ACCESS) in Washington, D.C. to address three issues impacting accessibility: 1) lavatories, 2) service animals and 3) in-flight entertainment.  The committee will consider all three issues in the coming months, and we will provide updates and summaries about this effort as it progresses.  If you are interested in learning more about the accessible air travel initiative or are planning air travel in the near future, check out MDA'sAccessible Travel Resource Center.

Tuesday, May 17, 2016

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

Wednesday, May 11, 2016

Spreading the Word

I love to receive comments and emails from people. It means a lot to me to have readers of my blog to take the time to comment about something I wrote. This week I received an email from a young woman whose father recently was diagnosed with Kennedy’s Disease. Her message is one that needs sharing.
Spinal Bulbar Muscular Atrophy, aka Kennedy’s Disease, like so many rare neuromuscular disorders, can be devastating to a family. It takes a certain type of strength for family members, especially children, to move forward after the diagnosis. This person is not only moving forward, she is looking for ways to help spread the word and help others.

Dear Bruce,
I would like to start this letter off by saying thank you for sharing your personal journey and wisdom through your writings. The KDA website and your blog have given me and my family comfort and strength.
I am 26 years old and live in Massachusetts. A few months ago, my dad was officially diagnosed with Kennedy’s Disease.
When my dad first explained to me that he had a neurodegenerative disease, it was the first time in my life I saw him as vulnerable. At first, it seemed impossible to imagine that the man who has cared for and protected me my whole life will slowly begin to depend on others. I started to think about all the little things that made him my dad. 
He is the man who tucked me in at night that checked for monsters under my bed. He is the one who gave me piggyback rides around the house, and played with me outside. He held my hand and watched me grow. I asked myself, “Will he be able to walk me down the aisle and dance with me at my wedding?” I know similar thoughts have gone through his mind as well, which is what hurts my heart the most. Yet, those are not the things that truly define him as a father. It is his quiet way of always understanding, and unyielding patience towards me. It is his reassuring presence, his unconditional love, and meaningful life lessons that make him my dad. These are the invaluable parts of my father that Kennedy’s Disease can never weaken or take away.
I’ve learned to never take another walk or hug from my dad for granted. As you have said before, living with KD is a never-ending learning process - and he has harder days ahead. It is undeniable that Kennedy’s Disease has made my father physically weaker, yet he is the strongest man I know.
Like many families who are recently diagnosed, I too, had never heard of Kennedy’s Disease. After searching long and hard for stories and information, I was disheartened by how little information I found. I then came across a post of yours that caught my attention:

Although KDA has made significant strides since 2008 when this was posted, I still believe this issue is relevant today. With the amount of technology and access we have to the Internet, how is there still such little research and public awareness? I believe that a key part to the solution is focusing on generation Y. Millennials are now the largest generation in our nation. They learn and communicate through social media outlets, and they’re comfortable with self-education.
Being part of the ‘millennial’ generation, I like to think of myself as slightly more tech-savvy than my parents, and most people their age.  Nobody has really talked to, or informed my generation about KD, and I would love to help spread the message through a visually responsive website or different media platforms.
I think one of the reasons why more people are not more empathetic towards KD is because there are very few personal stories available for the general public to connect with. People respond and relate to a personal cause. Posting videos and visuals are one of the most effective ways to inspire individuals to support an organization and help create a larger online audience. Out of the small percentage that do know of KD, it seems like the majority think of it as an “old man’s” disease, which is a misconception that needs to be changed. It's so important for people to realize Kennedy’s Disease doesn’t just affect one man; it affects a whole family. 
Please let me know if you have any questions about me, my family or my ideas... Any feedback would be greatly appreciated. I would love to contribute in any way. We are also planning on attending the KD conference in the Fall :)
Thank you for your time and everything you do.