Garth Brooks was right

There is a Garth Brooks song, “Thank God for unanswered prayers,” that I sing quite often. One verse says, “… some of God’s greatest gifts are unanswered prayers.”

When I went through the 'Why Me" and Bargaining (I'll do better if) phases of the Acceptance Process, I prayed to be healed or for researchers to find a cure or for me to be able to work until I was 65. I was definitely focused on the "I" (me) at that time.

Well, today another example of why I should 'thank God for unanswered prayers' came to mind.

My wife and I were having another moment … talking about her recently departed father. Well, I mentioned how wonderful it was to have moved back home 9½ years ago. This time in Georgia gave us many more years to spend with family and especially to be with her dad.

The only reason we were able to move back home in early 2003 was because of my Kennedy’s Disease and being forced to retire early because of this health condition. Yes, you would never want to wish this disease on anyone. Yet, if I hadn’t been forced to retire early we would only be spending the holidays and a couple other times each year with her family.

My forced retirement allowed my wife to spend at least one day a week with her folks. It also allowed us to be with them for every holiday and birthday as well as Mothers and Fathers days and other family events. What a wonderful blessing.

You just never know what life will bring and that is why I am thanking God today for these last 9½ years.

A not so friendly reminder

Blogging was the last thing on my mind this past week. My wife’s father unexpectedly passed away on Thursday.

With his loss I am once again forced to consider “the fragile nature of life.”

• You just never know what will happen next
• And, you can never count on anything.

It also reminds me to:

• Live for today
• Stop harboring resentment
• Choose my attitude rather than let it control me
• Release any anger that I am holding on to
• Count my blessing every day
• Stop clinging to unrealistic expectations
• Accept who I am with my current capabilities

And, most importantly, I need to always “be there” for my loved ones.


Some might consider this article a little negative, but it is not meant to be. In fact, it is uplifting for me. The loss of a family member and friend is a wakeup call to live more in the moment.

Re-assessing your purpose in life

I found the article below from “Prolific Living” by Farnoosh interesting and something I wanted to share. As Kennedy’s Disease, or any other neuromuscular disorder, progresses, we are faced with many changes in our life. These changes could include our work, family, friends, hobbies, etc.

Often, we can get lost during this transition. When that happens, it is important to get ‘back on track’ quickly and that could mean a change in our long and short term goals including our focus. Having a “life’s purpose” helps keep us moving forward and positive.

This is not the entire article, but it contains the meat of it and will get you thinking.

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How Do You Define a Life Purpose

Life purpose is the main reason you were put on earth. What are you here to do? It’s more than just make it to the end of the day at hand. It’s more than to just have fun all day long.

The phrase “there are no wrong answers” has never applied more as when it comes to the life purpose. There is no such thing as a wrong life purpose. And your life purpose is NOT going to be the same as your friend or your sister or your mother or your children or your role models, so own up to being unique and special!
 

Finding your life purpose: Discovery Questions

So how do you actually find this purpose, if you really have no idea what it could be? It’s about asking the right questions, and asking them from the right place and with the right intent. These are my discovery questions for you. This is a more analytical approach to finding your purpose. The answers to these questions will contain your life purpose.

The questions are short. The answers can be long. The timing is up to you but the distractions are a no-no. The best time to do this is in the morning, after you are fully awake but before your mind fills up with the day’s chaotic tasks and things to do. The best accompaniment to this is your favorite music or your favorite pet. Make a harmonious corner for you and answer away!

1. What fulfills me?
2. What drives me?
3. What inspires me?
4. What do 1-2-3 have in common?
5. What problem can I solve for others with the common thread in 4?
6. What frustrates me?
7. What pains me?
8. What saddens me?
9. What do 6-7-8 have in common?
10. What problem can I solve for others with the common thread in 9?
11. What terrifies me?
12. What worries me?
13. What can I do to change 11-12?
14. What can I do with this change to help others?
15. What do I love doing?
16. How do I feel when I am doing 15?
17. What happens if I stop doing 15?
18. What happens if I kept doing 15 forever?

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If you are still reading this article, you are well on your way to reconsidering what your life’s purpose is considering today’s situations and tomorrow’s projected constraints. I performed something similar several years ago and that is how I ended up writing this blog and supporting others through the Kennedy’s Disease Association. I do not regret either action and feel I am far better off because of it.

So I ask you, WHAT IS YOUR LIFE’S PURPOSE?

Free at last …

My wife feeds half of the hummingbird population in the Southeast. Yes, I am exaggerating, but it often seems that way. Right now she has nine feeders on our front porch and anywhere from twenty to thirty hummers hovering and drinking at one time. It is almost dangerous out there as they dive bomb each other trying to protect their feeding spot. During the height of the hatching season, we can have close to a hundred feeding. Neighbors and friends stop by just to observe the spectacle.

Thursday morning I had just returned from Fred's second walk when I noticed a small bundle (like a crumbled leaf) on the garage floor in front of my van’s front tire.  I took a closer look and saw there were two feet and a beak attached to the mess.  After closer inspection I realized it was a male Ruby-throated hummingbird and it wasn't moving.  I carefully picked it up and placed it in my left palm.  I was feeling terrible as I removed the spider web and dog hair that smothered it like a cocoon.  I kept on wishing I had noticed it earlier. Perhaps it would still have been alive then.

As I freed a bunch of hair and web from the hummingbird’s legs, it opened its eyes and righted itself in my palm. When it spread its wings, stretching them to their full expanse, I thought for certain it would fly off.  Instead, the hummingbird sat in my palm as if he was resting, perhaps regaining his strength.

I went around to the front porch looking for my wife who was mowing the lawn.  I flagged her down and she came over wondering what I was holding in my hand.  I explained the situation and transferred the hummer to her palm. She carried it to a feeder hoping it would eat.  As she placed it on the perch, the hummingbird took to wing and flew off.  We both watched amazed as it rose into the air and flew over to a bush to rest. The experience was exciting and it filled both our hearts with gratitude.

Like the hummingbird, I often feel I am bound (chained) to the earth. I hope that someday a researcher finds a way to break my chains that will allow me to be free once again.

Men never ask for directions

There have been plenty of jokes and stories about men being too proud to stop and ask for directions. I guess I am the exception, because it never bothered me to ask someone for help. Perhaps it is because I was in sales before cell phones, GPS and OnStar.

Now allow me to switch gears a little. About 9 of every 10 inquiries I receive are from spouses, caregivers and daughters.

• They often start out by saying something like … “my husband (or father) has Kennedy’s Disease …”
• And, they almost always express their concern for the uncertainty that accompanies living with a progressive disorder. “He just sits there” … or, “He won’t talk about what he is going through” … or, “He refuses to …”
• Then, the writer, after expressing their concern, almost always asks, “How do I get my husband (or father) to …”

I call this the proactive approach to coping with a neuromuscular disorder. The person feels she/he needs to take some responsibility for helping the person they love better deal with their health issue.
The difficulty lies not with the disease. Instead, it is associated with the way their loved one is dealing with the disease. And, being that some men are a little stubborn, they feel they need to reach out to anyone that might be able to help. Asking for help from others is not something many men find easy to do. It is especially difficult when the help we need is for something that we ‘should’ be able to do. The difficulty comes from dealing with something that we have no control over.

Because of this innate attribute of man, I once again say …

Thank God for our loved ones!

The role of technology in research

MDA’s Quest Magazine had an interesting article by Richard Robinson this month. “Seeing is Understanding” is about the use of Magnetic Resonance Imaging (MRI) to illuminate muscle and nerve to speed research and aid clinical trials.

The article states that “for neuromuscular disease researchers, new developments in imaging muscles and nerves are bringing new understanding of both healthy tissue and disease processes. These imaging techniques are allowing researchers for the first time to look deep within the body to track disease and to monitor the response the response to new therapies. They also have the potential to reduce the need for uncomfortable biopsies, to increase the speed and accuracy of diagnosis, and even to reduce the number of animals needed to conduct neuromuscular disease research.”



The advantages of using an MRI are discussed in the article.

1. Versus a biopsy, it provides an image of the entire muscle. With a biopsy, there is no guarantee that the tiny portion sampled will adequately represent the entire muscle.
2. Imaging can be done quite often. This becomes an advantage when studying a progressive disorder.
3. Imaging may provide important clinical information much earlier … before measurable weakness is observed. An MRI can detect muscle changes before doctors can see a change of function.
4. A MRI makes it possible to look at multiple muscles simultaneously. Since the disease may progress more aggressively in one muscle group, the ability to capture change in several areas means a more accurate picture of the entire body. It also offers a better opportunity to see if there is a response to therapy in one area versus another.
5. Imaging may be the best way to test therapies with a small number of patients. The benefit here is determining whether anything is beneficial to a small number of patients without having the burden and expense of a full clinical trial.

And, one advantage for animal lovers is that there should be a need for fewer animals. Normally there is a need to study large numbers of mice (mouse models) to compensate for individual variations. Whole-body imaging in live mice avoids this problem because researchers can see the entire muscular system. And, best of all, imaging can be done without sacrificing the animal which often has to be done by other current methods.

The article ends by comments that ten years ago the technology was very primitive. Each year speed and technology improves meaning usage and advancements will also accelerate.

Today’s Food for Thought

Sometimes an explanation can be so simple, yet profound, that as soon as you hear it you know the speaker is on to something important. Alan Watts, who passed away some forty years ago, was one of those individuals that could breakdown things very complicated into bite size morsels that everyone could understand. He wrote several bestselling books in the 50s and 60s including ‘The Way of Zen’ as well as hosted, or was a guest, on many radio and television programs.

The creators of South Park decided to take on one of Alan Watts’ commentaries on ‘LIFE’. The first video (2:22) is actually the end of Mr. Watts message. The second video is the entire commentary (9:29). Now I don’t watch South Park even though several people have told me how creative and edgy it is. However, I enjoyed their creative interpretation of Watts’ message.

This blog expresses my belief that life is a journey with many ups and downs, ruts and potholes, turns and side trips, as well as bypasses and detours. To think we have ever arrived is naïve. To think that it could never get any better or worse is just as naïve. We learn and adjust so that we might grow. Then we learn something more and adjust again. The point of view that we have at a certain point in our life is only valid for that point in time. In other words, the only thing constant in our life is change.

Today I am working on acceptance.

Prioritize to Gain Clarity

I read an interesting article the other day titled, “Simplifying your Life” by Manal. Within the article was something that I thought might be of interest to my readers.

The section on “Gain Clarity” … determining what is important … was thought provoking. I performed a couple of the exercises and they were eye opening. If you find this article interesting, try a couple of the exercises.

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Gain clarity

This is the first and most important step you can do for yourself: Be clear about what’s important to you. Clarity about your desires and priorities will guide you through simplifying your life and adding more meaning to your experiences. When you know what’s important to you, you’ll let go of the noise and distractions.
Picking a handful of important desires and values will make it easier to say no to everything else. You will focus on the things that matter and reduce the superfluous demands on your time and energy to the minimum.
 
How do you gain clarity?


The subject of clarity has been extensively covered in the self-growth (development) field. Yet, it’s one of hardest aspects of growth to actually do. It’s been a constant struggle for me. I’ve been experimenting with a combination of two tactics that are helping me tremendously in continuing to stay focused on what’s important—and keeping it simple.

The two ideas are not new. I’ve heard them recommended a few times, among other things. It’s the synergy of both that is effective in maintaining simple focus.

1- Make a list of what’s important to you
List the 3 to 5 most important values or aspects of life that matter to you most.

• What are you craving in your life right now?
• Do you want a meaningful connection? Do you want more love?
• Do you want financial freedom?
• Do you desire a healthy body?
• Do you value creativity, peace of mind, autonomy … etc.?

Sit with it and think about it. What would bring you more peace and fulfillment? What would your ideal life look like? Write down what you really want and value. List all the things that come to your mind and heart.

2- Set your 666 priorities
No. This is not an invitation to call out the devil. It’s an exercise in helping you prioritize your needs and desires. Answer the following three questions the best way you can.

Start with the first question and give it your full time and attention. Once you’re completely done, move on to the next one.

Don’t overanalyze; just go with your gut feeling and answer based on how you feel. Answering this question will add a self-imposed sense of urgency—based on your personal values and priorities, not those of others.

• If you had 6 months to live, what would you do in those 6 months?
• If you only had 6 weeks to live, what would you do in those weeks?
• What if you only had 6 days to live, what would you do?

By going through the process you will:

• Clarify what’s important
• Prioritize the important without stress or worry
• Eliminate the unnecessary

Now that you have the answers, start with the shortest-term answer. What would you do if you only had 6 days to live?

A personal example from the author.
I have a lot of things I desire to do. I’ve always started with the biggest things and ignored the smaller ones that nag at the back of my head.

Turns out that the most important thing to me in the shortest term is to simplify my financial life and make it as easy as possible for my family to deal with our affairs after I’m gone. If I only had 6 days, the most important thing for me would be to clean up my financial act.

I’ve complicated things over the years. I have numerous documents, accounts, and transactions known only to me. If I depart this planet today, I’ll leave my family with a financial mess that will take them months, if not a year to untangle. So I’ve been spending the last week getting rid of the unnecessary and streamlining the process. After I strip down everything to the basics, I aim to leave a document with my will that will serve as a step-by-step guide.

My 6-day action is going to take a bit longer. I had to stop a few times for family obligations and unexpected interruptions. But that’s okay. I know where to focus and what to do. More importantly, I didn’t commit to anything new and I eliminated a lot of smaller things that didn’t matter.

Once I’m done with cleaning up my financial records, I’ll have a look at my answers and determine what I’d want to do in the next 6 days. The next thing will be from the 6 weeks list. I’ll pick one item at a time and work with it—no excuses or distractions.

When you’re focused on a single important action with an added sense of urgency, you’ll be able to eliminate the excess without hesitation. And this is the core of simplicity.

A research update

The other day another research paper was published. Below is the abstract from the report. I have not read the entire report, but it appears to be a continuation of an earlier paper published on “The Natural History of SBMA.” I have asked our resident biology professor to provide his insight and will publish his comments should they possibly be of interest.

Longitudinal changes of outcome measures in spinal and bulbar muscular atrophy

Atsushi Hashizume, Masahisa Katsuno, Haruhiko Banno, Keisuke Suzuki, Noriaki Suga, Tomoo Mano, Naoki Atsuta, Hiroaki Oe, Hirohisa Watanabe, Fumiaki Tanaka and Gen Sobue
Published: July 06. 2012

Spinal and bulbar muscular atrophy is an adult-onset, hereditary motor neuron disease caused by the expansion of a trinucleotide CAG repeat within the gene encoding the androgen receptor. To date, several agents have been shown to prevent or slow disease progression in animal models of this disease. For the translational research of these agents, it is necessary to perform the detailed analysis of natural history with quantitative outcome measures and to establish sensitive and validated disease-specific endpoints in the clinical trials. To this end, we performed a prospective observation of disease progression over 3 years in 34 genetically confirmed Japanese patients with spinal and bulbar muscular atrophy by using quantitative outcome measures, including functional and blood parameters.

The baseline evaluation revealed that CAG repeat length in the androgen receptor gene correlated not only with the age of onset but also with the timing of substantial changes in activity of daily living. Multiple regression analyses indicated that the serum level of creatinine is the most useful blood parameter that reflects the severity of motor dysfunction in spinal and bulbar muscular atrophy. In 3-year prospective analyses, a slow but steady progression was affirmed in most of the outcome measures we examined. In the analyses using random coefficient models that summarize the individual data into a representative line, disease progression was not affected by CAG repeat length or onset age. These models showed large interindividual variation, which was also independent of the differences of CAG repeat size.

Analyses using these models also demonstrated that the subtle neurological deficits at an early or preclinical stage were more likely to be detected by objective motor functional tests such as the 6-min walk test and grip power or serum creatinine levels than by functional rating scales, such as the revised amyotrophic lateral sclerosis functional rating scale or modified Norris scale. Categorization of the clinical phenotypes using factor analysis showed that upper limb function is closely related to bulbar function, but not to lower limb function at baseline, whereas the site of onset had no substantial effects on disease progression.

These results suggest that patients with spinal and bulbar muscular atrophy show a slow but steady progression of motor dysfunction over time that is independent of CAG repeat length or clinical phenotype, and that objective outcome measures may be used to evaluate disease severity at an early stage of this disease.

Letting Go

Guilt – a feeling of responsibility or remorse for some offense, crime, wrong, etc. Whether real or imagined. (Dictionary.com)

So often those of us living with a progressive disorder like Kennedy’s Disease experience some form of guilt. It can often be held internally (festering) or expressed in some way such as depression, remorse, frustration, etc. These feelings are often caused by:
 

• Concern for the family’s future financial security should you not be able to work.
• Fear that you passed the defective gene on to your daughter or possibly your daughter’s children.
• Frustration because you might not be able to perform the needed household or yard chores and repairs. And, these responsibilities will fall upon your spouse and children.
• Guilt for all the stress and concern you have and will cause your family.

At some point you need to address these feelings and hopefully come to terms with the fact that:

• Since the disorder is genetic, you did not cause or could have prevented the defective gene from changing your DNA.
• Since there is no treatment or cure, you could have not done anything to change your current condition.
• When you married or had children you did not know you had the defective gene.
• You have no idea how quickly the disease will progress and how it will progress.

And, once you believe that you had no control, nor do you have any control over this defect in your DNA, it is easier to let the negative feelings go.

Coping is another form of acceptance

Coping means “coming to terms with” and that is exactly what we must do when we live with Kennedy’s Disease. I have written several articles on how to cope or accept Kennedy’s Disease. It is such an interesting subject, however, that we can always use more help.


Today I am calling upon Dr. Phil for help and he has some interesting comments on the subject (http://www.drphil.com/articles/article/30/). In his article below I have noted several points that I consider important.

Coping With Disease

When someone in the family gets seriously ill, he/she might be the one infected, but the entire family is affected. Whether it's disease or chronic pain that has changed your relationship with a loved one, Dr. Phil has advice on how to cope:

• Don't let the disease become your identity (This is a great way to say this)
  You can manage an illness, or it can manage you. Are you becoming a full-time patient instead of a human being with a disease to manage? Investigate every avenue of rehabilitation and create the highest quality of life. Don't let the limitations of a disease become as handy as the pocket on your shirt. Do 100 percent of what you can do.

• Communicate (A couple of times a month I receive emails from care givers and family members asking how they can get their loved one to open up)
  If you don't talk about your feelings or how a disease is affecting the relationship, problems will only grow and eat away at you. Talk through the fear. Don't keep a stiff upper lip.

• Differentiate
  Direct your frustration at the disease, not at the victim. If the circumstances are making you feel angry and resentful, you may have a legitimate point. But if those feelings drive your behavior, your point will be lost. Yelling at someone or being overly critical doesn't help him become his better self.

• Accept your feelings (This is an important part of the ‘acceptance’ process)
  Know that you are not a crummy person if you don't feel sympathetic and compassionate at all times toward the person with a chronic illness. The toll of the illness goes beyond the infected person.

• Redefine the relationship (A good point and one that is often overlooked)
  Disease may force a family to adapt into different roles (the caretaker of the family becoming the one who needs to be taken care of, etc.), so you may need to come to a new understanding of what is "normal."

• Set realistic guidelines
  Outline what can be expected from family members as well as from the person who is ill. If you're sick, you can't be expected to do some of the things you used to do. If you've offered to help, you can't be expected to abandon your children and job because of it. Outlining reasonable expectations will prevent feelings of resentment on both sides.

• Confront your own emotions (This goes well with the ‘Communicate’ point above)
  If you are ill-equipped to deal with your feelings, you may grow cold or withdrawn. Hiding your feelings can only cover up the raw pain for so long -- and can also prevent you from being close to your loved one. Remember, monsters live in the dark.

• Don't force children to deal with adult issues (The transition has to be comfortable and designed for the child’s age)
  Young kids shouldn't be expected to go from being a child to the caretaker of a seriously ill parent. If a child has taken on the role of caretaker and now can't go back to being a kid again, you need to him/her them re-learn how to have fun, be silly and play again.