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

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:

Empathy - How do we reach a wider audience?

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.

What can I do today to help?

Since this last week was one where a family member had a serious health issue, a video on “compassion’ caught my attention yesterday morning. 



First, we need to have some definitions:

• Empathy:  To recognize, and to some extent, share feelings that are being experienced by another.
• A person might need a certain amount of empathy before they can feel compassion.
• Compassion:  A deep awareness of the suffering of another.  To suffer together with another … to shelter and embrace the distressed.

In the TED video Joan Halifax: Compassion and the true meaning of empathy discussed the elements of compassion. 

Ms. Halifax explained that compassion is an inherent human quality.  A person fully engaged in a compassionate situation feels (experiences)  the suffering a lot more, but returns to their baseline (normal state) much quicker.  She said that researchers have also proven that compassion enhances our own immune system.  There is something within the process that strengthens us physically and emotionally.


There were two components of compassion.

1. A capacity to see clearly into the nature of the suffering … including a desire to transform the suffering.
2. The ability to not become attached to the potential outcome ... living in the moment without concern for what might or will happen.

I know there have been times where I stumbled looking for the right words.  I also know that I occasionally ‘over-talk’ when perhaps all the person wanted was for me to just be there for him or her.  My wife is far better at ‘being there’ than I am.  It is time I learn from a master.

Making a difference

In another similar video an example was given of how just one shift in your daily thought process can change your life.  What if you woke up every morning and asked,

“What can I do today to help one other person or creature?” 

You are not going to change the world, but you are going to make a difference one person (or creature) at a time.  How would you feel at the end of each day knowing that you helped someone or something?  Wouldn’t you be happier and more content?

I am putting a post-it note on my bathroom mirror today.  Are you?