Thursday, June 30, 2011

We must never forget

I had another article I was planning on using today, but a friend sent me an email this morning.  As soon as I watched the YouTube video I knew this message has to be shared.


If you are a follower of my blog, you know that I am patriotic.  Being a veteran I feel we do not do enough to honor the men and women that serve our country.  This 5½ minute video captures a beautiful and thought-provoking sentiment that needs to be shared.

soldiersIn this fast-paced, multi-tasking world it is easy to forget about those people that are not a part of our daily lives.  However, the family, friends, and loved ones that have someone they care about serving in our armed forces never forget.  It is a daily struggle to remain strong and hopeful that they will return safely and soon. 
Please, take a few minutes and watch this film called “Remember Me” from Lizzie Palmer .  She is a 15 year old girl that is wise beyond her years.

Tuesday, June 28, 2011

If the world were 100 people

I came across this fascinating website the other day.  I agree with the article in Digital Inspiration that when you consider the world’s population of 6,927,434,849, it is difficult to put it into perspective when you try to break it down into sub-categories.  Yes, we could round it off to about 7 billion (give or take a hundred million), but it is still hard to grasp.  That is what makes the concept below so intriguing and easy to understand.

The Concept:

The World of 100 – by Toby Ng.  If the world were a village of 100 people, how would the composition be? The set of 20 posters is built on statistics about the spread of population around the world under various classifications. The numbers are turned into graphics to give another sense a touch – Look, this is the world we are living in.

Digital Inspiration described it this way:  World statistics are often hard to remember but if the same data is presented with visuals and in relative form, things can get a little simple. That’s exactly how designer Toby Ng is approaching the problem with his World of 100 project. He has created a set of 20 posters around various world statistics but instead of talking in billions, numbers that are hard to visualize, the theme revolves around a village that has exactly 100 people.  Example:  If the world were a village of 100 people, 14 won't be able to read - that number is easier to visualize than 14% of 7 billion.
Our Village:
Today’s article is a visual look at our little village of 100 people (the world population).  I have selected five key areas (of the 20 shown on the website above).  Please take a moment and really look at each of these posters.  They tell a story. 

Nationality - 100
Freedom - 100
Language - 100
  Religion - 100
Money - 100

Even though it would be nice to be one of the ‘6’ in the ‘Money’ poster above, we still have much to be thankful for … especially our freedom.

Sunday, June 26, 2011

Just for the fun of it

We all need a laugh occasionally.  This joke hit my chuckle-bone this morning.

An elderly man is stopped by the police around 1:00 a.m. and is asked where he is going at this time of night.
The man replies, "I am going to a lecture about alcohol abuse and the effects it has on the human body."
The officer doesn’t believe the man and asks, "Really? Who is giving that lecture at this time of night?"
The man replies, "That would be my wife."
More Ideas Worth Sharing

Several readers commented how much they enjoyed “TED – Ideas Worth Sharing.”  Since the last article I have watched several more presentations.  Below are some of my recent favorites.  They are more entertaining than educational this time.  Enjoy!

Bring Dinosaurs to Life 

Jack Horner: Building a dinosaur from a chicken is an entertaining yet  informative discussion on how make a chicken into a chickenosaurs.  On the serious side he explains how the embryo of a chicken actually has fingers and a long tail.  Then, through the genetics that takes place within the egg it modifies the original genes into what we know as a chicken.

The War Horse 

War Horse
And for strictly entertainment watch Handspring Puppet Company: The genius puppetry behind War Horse .  This is so interesting because of the concept behind making puppets so real that you believe they are alive.  Basil Jones and Adrian Kohler bring the emotional complexity of animals to the stage with life-size puppets including the latest triumph, “War Horse”, who trots, prances and gallops.  Also, note the ears and tail, as well as the breathing, because it shows how they gave emotions to the horse’s personality.  This is truly amazing!

And, just for fun 

cell phone
Gel:  Gotta share! is three minutes of improve fun on how far the social network has come.  It takes a serious subject (people who cannot unplug, unhook, or turn off their electronic devices), in my opinion, and has a little fun with it.  Enjoy!  

Thursday, June 23, 2011

Four Month Update on Dutasteride

It is hard to believe I have been taking dutasteride for four months already.  This last month brought an interesting revelation.

Oh-Oh … What’s happening?

When I woke up on May 30th I noticed that something was different.  My left knee ached.  My quads did not feel as strong puzzledlook during my short leg exercise program.  My stamina just was not there also.  Under normal conditions, I would not have thought anything about it … just another twist in living with Kennedy’s Disease.

But, these were not normal circumstances.  I had felt strong for 3½ months … stronger than I have felt in years.  My confidence had grown with each passing day and now … I felt vulnerable again.

Wake-up Call

It took me a few days to figure out what was happening.  I had not listened to my body and had pushed it too far.  For 3½ months I had continued to add exercises and reps.  My ‘short program’ had increased by 50% and my ‘long program’ by 80+%. 
My body finally told me, '’ENOUGH ALREADY.” 

It was time for a correction.  I started listening to my body again.  I backed off on my off-day exercise program.  I started doing the same exercises and reps I use to do before taking dutasteride.  I also decided to leave my new ‘long program’ alone just to see what would happen.


Within days I saw and felt some positive changes.  My left knee stopped aching.  I felt a little stronger again.  And, I had more energy and better stamina.

Two weeks after backing off on the ‘short program’, but keeping the ‘long program’ at just under two hours, I felt good again.  My strength was as good as it was prior to the ‘wake-up-call’.  My knee is fine again.  My confidence is back.  I am relieved. 

Three weeks later I can say that “I’m back.”

Lesson Learned

Practice what you preach!  :-)

Tuesday, June 21, 2011

We are never too old to learn

This article is not about Kennedy’s Disease, or research, or personal experiences while living with this disease.  Today I am just saying that there is so much going on around us that we need to continually broaden our horizons.

If you have not tried TED – Ideas Worth Spreading, you are missing something.  I love to visit this site once a week and watch the latest presentations that peak my interest.  Some of the presentations are educational, others are entertaining, and some are just ‘WOW’.  Below are just four random examples of things you might expect to see on TED.

A Car for the Blind:

This nine minute presentation was interesting and provided the ‘WOW’ factor.  Dennis Hong: Making a Car for Blind Drivers really goes to the extreme of what modern scientists are capable of doing once they set their mind to something.  Watching the demo of an actual blind person driving the car around a track with obstacles being thrown in front of him is amazing.  No, it is not a robotic self-driving car, but a car that can actually be driven by a blind person.  Speed, route and other normal driving practices can all be controlled by the sightless driver.  Dr. Hong ended the presentation by revealing some of his emails and letters he has received about the vehicle.  One, for example, was so funny.  “Now I understand why there is Braille on a drive-up ATM machine.”  

Dennis Hong doesn’t plan on making these type vehicles available to the blind.  Yet, he emphasized that the spin-off applications that were discovered in building this vehicle could be used to make cars safer and might help make the sightless person live life more fully.

Innovations in Medicine

Daniel Kraft: Medicine’s Future offers a fast paced look of what to expect over the next few years in medicine that are powered by new tools, tests and applications that bring diagnostic information right to the patient’s bedside.


A few minutes ago I watched a five minute video on icebergs.  Camille Seaman: Haunting Photos of Polar Ice is fascinating in a strange way.  Ms. Seaman has given these icebergs a personality and a history with some photographed that are as young as a 1,000 years old and others that are over a hundred thousand years old.  The last scene of an iceberg rolling over in the ocean is astonishing.  Amazing stuff!

Music Anyone?

Cellist Maya Beiser plays for you in Maya Beiser and her Cello.  She is modern and inventive in her works and transforms sound in many ways.  Again, it is not what I was expecting and that is what makes it interesting.

Ted - Ideas Worth Spreading
These are just four random examples of dozens of presentations on technology, entertainment, design, business science, global issues and creativity.  The beauty is that TED is free.

I think you get the idea why I am excited about this website.  It keeps me coming back each week to peruse their directory because I want to learn and experience more.  Try it and let me know what you think.

Sunday, June 19, 2011

Happy Father’s Day

I am taking the day off from writing.  It has been good to just get away from the computer.

Our children bring us a lot of joy.  And, they never really grow up in our mind’s eye.  They will always be our little girl or boy even though they are adults.  It is our privilege and right as a parent to want to hug them and protect them, no matter what their age.

To all you ‘fathers’ out there,
have a great day. 

Thursday, June 16, 2011

Living and Dying at the Sam’s Club

I started writing a story last year about a person who is handicapped that goes shopping at a warehouse club.  I tried to incorporate some of my experiences and also included my thoughts on what it is like navigating through these monster warehouses pushing a cart.

I gave up walking through these clubs a few years ago.  The concrete wears me down too quickly.  Using the club’s scooters are okay, but they are not fast enough.  I might die of old age before getting from the entrance to the frozen food section.  My wheelchair makes the experience more tolerable. 

I just finished the rewrite yesterday.  For my post today I am providing the link to this story if you are interested.

sams club

I hope you enjoy it as much as I enjoyed writing about the experience.  If it gave you a few chuckles, let me know.

Tuesday, June 14, 2011

Stem Cell Research; Progress and Setbacks

MDA’s Quest Magazine has an excellent article written by Margaret Wahl on Stem Cells that I encourage everyone to read.

Progress is ongoing in coaxing stem cells along specific paths, altering their genes and understanding the immune response to stem cell transplantation.

stem cell

The article provides an explanation of the current successes and setbacks including:
  • Scientists have coaxed stem cells into becoming astrocytes, a type of nervous-system support cell; and converted skin cells to nerve cells without first taking them through a stem cell stage.
  • A new strategy for correcting genetic defects in stem cells has been developed.
  • The immune system may not tolerate transplants involving induced pluripotent stem cells, even if the donor and recipient have the same genetic background.
  • The National Institutes of Health can fund research involving human embryonic stem cells, with some restrictions.

I found the explanation of the different kinds of stem cells interesting:
  • totipotent, meaning they can become any other kind of cell;
  • pluripotent, meaning they can become many (but not all) kinds of cells;
  • embryonic, meaning they're taken from human or animal embryos, which are multicellular organisms at a very early stage of development;
  • fetal, meaning they're taken from human or animal fetuses, organisms at a later stage of development than the embryo stage;
  • adult, meaning taken from a fully developed animal or human of any age (muscle satellite cells are one example); and
  • induced, meaning the cells were converted back into stem cells after having matured into other types of cells.

Popular alternatives now in development as potential therapies for neuromuscular and other diseases are:
  • induced pluripotent stem cells, which are cells taken from mature organisms and then converted back to pluripotent stem cells, after which they can be coaxed along specific developmental lines in the laboratory; and
  • adult stem cells, which are immature cells found in fully developed animals and humans that have the potential to develop into specific cell types, such as the satellite cells found in muscle tissue that can become muscle cells under certain circumstances.
The Quest article goes into potential therapies as well as recent concerns about rejections of certain stem cells by the immune system.

The link to the Quest article is:

Sunday, June 12, 2011

A Pain in the Neck!

My neck has been giving me fits this last week.  I have been one of the fortunate ones that has not experienced any neck problems … until now.  It was so bad three nights this week that I was having neck spasms while brushing my teethe.  I do not remember ever having a neck spasm in years.

neck muscles

Perhaps it is because I have been working a lot more hours on the computer (KDA stuff and some fiction writing).  I probably need to take more breaks if I am going to work 6-8 hours at the keyboard.

I know my brother, who is older than me, has had neck weakness  for several years.  At times, he has to hold up his head by resting it on his hand.  For that reason alone I started performing neck exercises three or more times a week.

It could also be caused by two new neck exercises that I starting performing last week … or a combination of both computer work and the exercises.  Of course it doesn’t help that I have turned into a “pencil neck” these last few years.


I need to back off on my story writing and mind-mapping for a couple of days and see if things improve.  If that doesn’t work, then perhaps try a week without the new exercises.

Has anyone found any neck exercises that has helped you?  I would appreciate your input so I can try them out.  Thanks.

Friday, June 10, 2011

Clinical Research Study on Kennedy’s Disease

For several months now we knew a clinical study was coming.  This week NIH posted the following information on their website.

I feel this is an important study since I am an advocate of the benefits of exercise.  If you are interested in participating in this study, the contact information is near the bottom of this page. 

NIH Clinical Research Studies

  Active Accrual, Protocols Recruiting New Patients

Effect of Functional Exercise in Patients with Spinal and Bulbar Muscular Atrophy
Number: 11-N-0171
A.  Summary: Background: Spinal and bulbar muscular atrophy (SBMA) is an inherited disorder that affects men. People with SBMA often have weakness throughout the body, including the muscles they use for swallowing, breathing, and speaking. We do not know if exercise helps or harms people with SBMA.

B.  Objective:
-To see if a 12-week program of either strength exercise or stretching exercises will improve strength, function, or quality of life in people with SBMA

C.  Eligibility:
-Participants will be men 18 years of age or older who have genetic confirmation of SBMA.
-They must be able to walk at least 50 feet with or without an assistive device such as a cane or a walker and stand for 10 minutes without using an assistive device.
-They must have access to a computer with an Internet connection.

D.  Design:
-At the first visit to NIH (2 days), participants will have a medical history taken and undergo a physical exam. They will also have blood tests and an EKG, and complete questionnaires about mood, health, and exercise. Tests of muscle strength, balance, and endurance will also be done.
-Participants who qualify for the study will receive instruction about either strengthening or stretching exercises. They will do these exercises at home one to three times a week for 12 weeks.
-They will wear a small activity monitor while they exercise and record their exercise in a diary.
-At the end of 12 weeks, participants will return to the NIH for 2 days. They will undergo the same tests as they had on the first visit.
-Participants will receive follow-up phone calls and e-mails during the study and for 4 weeks after the last visit.

E.  Sponsoring Institute:
National Institute of Neurological Disorders and Stroke (NINDS)
F.  Recruitment Detail
Type: Participants currently recruited/enrolled
Gender: Male
G.  Eligibility Criteria:
1. Genetically confirmed SBMA.
2. Ambulatory and walk a distance of at least 50 feet with or without a walker.
3. Able to stand for 10 minutes without the use of any assistive devices.
4. Willing to travel to the NIH at the beginning and end of the study.
5. Willing to participate in telephone monitoring.
6. AMAT score of less than 41, but greater than 14.
7. Male.
8. Willing to participate in all aspects of trial design and follow-up.
9. Access to a computer with an internet connection
10. Able to do all of the exercises according to the standards of the study examiners at the beginning and end of the study
11. Willing to forgo starting an additional exercise plan for the 12 week duration of the study
12. Age greater than 18 years
1. Medical condition which would preclude exercise such as COPD, congestive heart failure, and cardiac arrhythmias.
2. Presence of an additional comorbid condition such as stroke, myopathy, or radiculopathy which also results in weakness.
3. Beginning a separate exercise program involving at least two weekly sessions of 20 minutes of exercise each within two months of the start of the trial.

Patient Recruitment and Public Liaison Office
Building 61
10 Cloister Court
Bethesda, Maryland 20892-4754
Toll Free: 1-800-411-1222
TTY: 301-594-9774 (local),1-866-411-1010 (toll free)
Fax: 301-480-9793
Link to the article:

Wednesday, June 8, 2011

I’m Listening!

Nine days ago I noticed that my legs did not feel quite as strong.  My left knee was also in a lot of pain when performing the standing exercises.  I immediately associated the problem with the dutasteride I am taking.  What was going on?  Was it not working? 


Upon further analysis, however, I realized that I needed to follow my own advice and listen to my body.  Every month since starting the dutasteride I had added reps and additional exercises to my daily routine.  And, whenever I added something, they were easy to perform.

Last week while performing my ‘light day’ leg exercises my knee was killing me.  I stopped immediately.  I know understand what happened.  I had increased my long routine by 60-90% (40-50 minutes longer) and my short routine by 50%.  I had finally max’d out (pushed too far) and needed to cut back a little.  I also realized the arthritis in my left knee had not been a problem until I added too many reps.

I decided to experiment a little.  I cut back on my light routine to the original reps.  Within a few days my knee was a lot better.  Yes, the exercises seemed very easy, but that’s okay.  The intent of the light exercise program is to keep the motor neurons firing; not to build muscle.


Monday’s long exercise was 110 minutes and today’s was 115 minutes.  Both were performed without a problem or any pain.  My short exercise program is back to the original one and it is easy and also performed without pain.  Best of all, I feel better and stronger again.  Is this another case of, “Do as I say, not as I do”?


I guess I am not Mighty Mouse and kryptonite still flows through my genes. :-)  But, I’m listening again and am much better as a result.  Perhaps I need hearing aids!

Sunday, June 5, 2011

Slower is better …

I read an interesting article this week in the CostCo Connection.  The title was, “Wait Training – Exercising slowly can bring quicker benefits”. 


The article, written by Star Lawrence, discussed a study and a book by Ken Hutchins.  The study involved the University of Florida, Nautilus, and Mr. Hutchins.  They teamed up to see how frail older women could use professional gym equipment to build bone and increase strength.  They found that women who performed the exercises slowly reached their goals and without injury.

A Massachusetts study twenty years later (2001) involved two groups.  The control group did 10 repetitions of each exercise where each rep involved 2 seconds in each direction (up and down).  The other group did 5 reps where it took 10 second going up and 4 seconds coming down.  In other words 14 second for one rep versus 4 seconds.

The results were so surprising that the researchers had to recheck them.  The group performing the slow exercise reps attained 50% greater strength than the standard (control) group.


It may be a simple change, but it is not easy.  The principle is to raise and lower weights (or arms and legs) to a slow count … Hutchins prefers 10 second up and 10 down until the muscles are fatigued.  It eliminates the use of momentum.

Exercise 4

Use the amount of weight you are most comfortable with (or no weights initially).  The idea, once again, is to slow the rate going up and down to force the muscles to work harder.  When asked if there is anyone that should not try this, Hutchins said he cannot think of anyone who would not benefit.  He has even taught people in nursing homes and everyone benefited.


I tried this routine on Friday’s long workout and it was much more difficult and I could feel the difference by the end of each series of reps.  Since there is no jerking, it also helps prevent injury.

I remember my physical therapist reminding me to slow down.  He wanted gravity to play as much a role in the exercises as the weights.  I will continue to try this slower routine and let you now how it works for me.


If interested, there are a couple of good online articles that further explain the routine and potential benefits:

Thursday, June 2, 2011

Researchers Exploring Disability Perceptions

MDA ‘s Quest magazine posted the following article on a study at the University of Michigan.  I took the confidential survey today and also asked to be sent the results. 

The survey questions were rather intriguing because it deals with perspectives and beliefs more than hard facts.  The more people that take the survey the more valid the results and that is why I am posting the information.

I pulled this information off of their website:  “The lab’s Disability Identity Project seeks to expand this body of literature by exploring the social identity of people with disabilities, and seeks to ask (among others) the following questions: Who claims the label of “disabled” and who does not? How does type of impairment (learning disability, chronic health condition, d/Deaf or hard of hearing, etc.) affect this choice? How will impairment attributes, e.g. age of onset, degree of visibility, degree of severity, etc. also affect this choice? How does claiming or not claiming this identity affect an individual’s quality of life?”



Researchers at the University of Michigan are studying why some people identify themselves as disabled and others do not

Researchers at the Psychology of Disability Lab at the University of Michigan in Ann Arbor are exploring the social identity of people with disabilities through a short, anonymous, Web-based questionnaire.

The lab's Disability Identity Project is being headed by principal investigator Adena Rottenstein, a doctoral candidate in psychology.

About the study 

"I'm curious about why some people identify as disabled and others do not," says Rottenstein, who notes that she herself has a disability and that most of the research assistants on this project do as well.

Doctoral student Adena Rottenstein wants to know more about what determines a person's perceptions of his or her disability.

She and her colleagues want to know, for instance, who perceives himself or herself as "disabled" and who does not; how the type of disability or impairment affects this choice; and how factors such as the disability's onset, severity and degree of visibility affect one's self-perceptions.

All information can be submitted anonymously, although Rottenstein says those who take the online survey and who volunteer their contact information can receive a copy of the results. Participants are also invited to suggest questions for future surveys.

"It's really important to me that my work is transparent and collaborative," she notes. Participants are invited to provide their names and email addresses if they wish to receive copies of the study results and/or information about future surveys. "However," Rottenstein says, "the contact information will be kept in a completely different data file so that participants' names can never be matched to their survey responses."

MDA is not affiliated with this study.

To participate:
Read more about or fill out the "snapshot" survey. It should take five to 10 minutes to complete.
Contact the researchers at with any questions or concerns.