Tuesday, August 30, 2011

Magic … It is time for a little fun

My wife constantly tells me I have too much time on my hands since I retired.  Perhaps she is right. This post has nothing to do with Kennedy's Disease... and yet everything ... to do with 'living with Kennedy's Disease'.

Almost everyone enjoys magic.  I ran across these three videos on TED the other day and thought I would share them with you.  I felt great after watching these talented entertainers. 

Once again it proves that laughter is the best medicine! 


This was an enjoyable five minute presentation that will get you warmed up for more tricks.

Marco Tempest: The magic of truth and liesMagic-Tempest

Using three iPods like magical props, Marco Tempest spins a clever, surprisingly heartfelt meditation on truth and lies, art and emotion.


This is a fun twenty minute presentation of magic of the mind.  Keith’s second-sight demonstration is amazing.  The ending had me laughing so hard because a member of the audience believes he is smarter than the magician … until the tables are turned.  Enjoy!

Keith Barry does brain magic

Magic-Barry First, Keith Barry shows us how our brains can fool our bodies -- in a trick that works via podcast too. Then he involves the audience in some jaw-dropping (and even a bit dangerous) feats of brain magic.


This is a longer (31 minute) presentation, but Mr. Green is so funny and talented I could not stop watching.

Lennart Green does close-up card magicMagic-Green

Like your uncle at a family party, the rumpled Swedish doctor Lennart Green says, "Pick a card, any card." But what he does with those cards is pure magic -- flabbergasting, lightning-fast, how-does-he-do-it? magic.

Are you smiling? 

Do you feel better?

Sunday, August 28, 2011

Communications - It’s not a one-way street

Effective communications … wow, we can spend a lot of time on this subject.  It could be simplified to the title, but so much would be lacking and left unsaid.

Many of us having to deal with a disease that has no treatment or cure.  And, initially we often have problems explaining how we feel.  We tend to hold these feelings close to our chest often for fear that we might come across as weak or emotional or in need of help.  Many of us carry this self-made belief that we should ‘man-up’ (suck it up) and just get on with life.  

Unfortunately, holding these thoughts and feelings in is not healthy. 
  • First, we need to be able to unload … de-stress … because holding these feelings inside can be harmful to your health as well as family relationships. 
  • Second, we cannot always see the forest because of the trees.  We become so entangled with ‘what-if’’, ‘why me’ and ‘what are we going to do now’ that we lose sight of the end-game (in other words, how do I maintain loving and healthy relationships as this disease progresses).

Communication Tools

I read an interesting article recently in “The Costco Connection” about “Aging Wisely.”  One section was on “Simple communications tools to remember.”  The points fit well into today’s topic.  Below are the points as well as my translation.
  • Take a walk in the other person’s shoes.  (Yup, it is the old walk in mile in another person’s moccasins)  Try to understand what’s going with all your family members. 
    • Translation:  Ask each family member how they see your condition and what it means to them if you cannot physically do what you used to be able to do.
  • Separate the person from the problem Conflict is a shared problem that you can conquer together without placing blame.
    • Translation:  So often we feel this is all on us and we have let everyone else down.  We find it difficult to share our thoughts and fears.  In other words, it is all about me.  Once we can separate ourselves from the situation and look at it from a family perspective, the ‘how do we continue to grow as a family’ become more evident.
  • Remember optimism.  Celebrate small successes and build on them.
    • Translation:  When we are capable of clearly looking at the situation it is not a ‘now’ problem.  Kennedy’s Disease, for example, is a slow progressive disorder.  Now that we know it is not the end of the world.  We have time to think it through and consider our options.  We have time to plan and time to talk it over with others that care.
  • Break bread together.  Sharing meals together can help reestablish bonds and open communication channels.
    • Translation:  Pick the right time to talk about the subject.  Often, the best time is at the end of a meal, when the family is more relaxed and not multi-tasking.
  • Regularize family meetings, phone calls and emails.  Keep everyone in the loop.
    • Translation:  Don’t just talk about it and forget it.  Many times additional questions and concerns will come up later.  It is your job to keep the communication channels open and to make the entire family feel comfortable talking about any concerns.
  • Try a little humor.  It is not a funny situation, but if you can avoid taking everything so seriously, it will make it easier to discuss.
    • Translation:  Everyone must know it is not the end of the world.  Life will continue on.  Yes, things might change over time, but you are still a loving family … and that will not change.  If the rest of the family can see that you can still joke about things (i.e., your recent fall), it will help ease the tension.


Keeping the channels open

Keep in mind that you were the family leader before the news and you are still the family leader now.  It is your job to keep the communication channels open and to make other family members feel comfortable with asking questions or expressing their concerns.  Occasionally it might even mean saying, “I don’t know.” 

For communications to be effective, it has to be a two-way streetcommunication-family. 
  • When was the last time you had a family meeting to discuss anything including your current health situation? 
  • During the meeting did you hear how the rest of the family was dealing with the news? 
  • Did you make them feel comfortable when they shared their concerns? 
  • Were you open and honest in answering their questions?

Friday, August 26, 2011

Social Security – Disability almost insolvent

I read this headline the other day and immediately clicked on the link to read more.  I am on Social Security – Disability (SS-D) and insolvency does not sound good.

Because of the number of laid-off workers and the aging baby-boomers (watch it … I resemble one of them) that SS-D is being flooded with claims.  The system was already in financial difficulty and this new surge has applications up over 50% this decade.  The growing number of applicants has further clogged the application approval process.  Some applicants have to wait up to two years for approval and this puts an even greater financial strain on families.

2017 is the date

A new congressional study shows SS-D could run out of money by 2017.  In recent years the focus has been on fixing the Social Security – Retirement program.  The problem is that SS-D is in much worse shape and there are no easy solutions.  Three major problems have crippled the system:
  1. Claims for SS-D always increase during a bad economy because the disabled find it much more difficult to find jobs that fit their abilities.
  2. The number of baby-bummers getting ready to retire at age 66 or 67.  However, if the person qualifies for disability, he or she can get full benefits earlier.
  3. If a person qualifies for SS-D, he or she is also eligible for Medicare after a two year waiting period.
The article goes on to say …

“As policymakers work to improve the disability system, they are faced with two major issues: Legitimate applicants often have to wait years to get benefits while many others get payments they don't deserve.
Last year, Social Security detected $1.4 billion in overpayments to disability beneficiaries, mostly to people who got jobs and no longer qualified, according to a recent report by the Government Accountability Office, the investigative arm of Congress.
… the application process can be a nightmare for legitimate applicants. About two-thirds of initial applications are rejected. Most of these people drop their claims, but for those willing go through an appeals process that can take two years or more, chances are good they eventually will get benefits.”
Patience is a virtue, but it is difficult to be patient when your financial wellbeing is crumbling around you.  
patience slogan 
If you are considering applying for SS-D, consider reading the “Social Security -Disability Guide” that can be found on the KDA website.  Many people have used the guide and found that it worked for them.  And, most importantly, a denial does not mean “NO”, it just means you have to appeal the denial and prove your case.

Tuesday, August 23, 2011

Researchers found cause of ALS

Yesterday morning I ran across the following article:  “Researchers Say They’ve Found Common Cause of ALS.”  I went on to read:

“The apparent discovery of a common cause of all forms of amyotrophic lateral sclerosis (ALS) could give a boost to efforts to find a treatment for the fatal neurodegenerative disease, a new study contends.
Scientists have long struggled to identify the underlying disease process of ALS (also known as Lou Gehrig's disease) and weren't even sure that a common disease process was associated with all forms of ALS.
In this new study, Northwestern University researchers said they found that the basis of ALS is a malfunctioning protein recycling system in the neurons of the brain and spinal cord. Efficient recycling of the protein building blocks in the neurons are critical for optimal functioning of the neurons. They become severely damaged when they can't repair or maintain themselves.
This problem occurs in all three types of ALS: hereditary, sporadic and ALS that targets the brain, the researchers said.
The discovery, published Aug. 21 in the journal Nature, shows that all forms of ALS share an underlying cause and offers a common target for drug therapy, according to the researchers.”
Later there was a comment from Teepu Siddique at Northwestern, “This opens up a whole new field for finding an effective treatment for ALS.”  He also stated, "We can now test for drugs that would regulate this protein pathway or optimize it, so it functions as it should in a normal state."

The article also said, “This finding about the breakdown of protein recycling in ALS may also prove useful in the study of other neurodegenerative diseases …”

After reading the article I asked Ed Meyertholen, our resident guru, what, if anything, this might mean for Kennedy’s Disease research.  Ed responded, “Realize that this is not a clinical breakthrough - they have not ‘cured’ ALS.  They are simply describing the mechanism of the disease.

The researchers are saying that ALS is the result of the inability of cells to proteasome adequately remove proteins.  Specifically, the proteasome (the wood chipper) is defective.  If you remember, it has been suggested that KD may be due to proteasome not being able to remove the mutant AR - so it fits in with this study even though it is a different disease.  Thus it is possible that a treatment for ALS may also work with KD.”

Hey, I’ll take any positive news on the research front.  You never know when someone might get lucky.  We live with the hope that someday soon there will be a treatment for Kennedy’s Disease.

Sunday, August 21, 2011

A Biomarker … What is that?

Yesterday Ed Meyertholen, KDA board member and resident guru for explaining anything complicated, hosted the chat room.  The topic was an update on the Gordon Conference.

It wasn’t long, however, before the topic shifted to biomarkers … what they are and why they are important.  The key takeaway was that biomarkers can help determine if you have a disease before any symptoms show up.  For example, a biomarker could show that a person has cancer forming before any other physical signs are evident (i.e., a tumor, nagging cough, blood in stool, decline in red blood cells, etc.).

I found the subject so interesting that I wanted to learn more so I went to Wikipedia for answers.

Wikipedia defines a biomarker as:


In medicine, a biomarker is a term often used to refer to a protein measured in blood whose concentration reflects the severity or presence of some disease state. More generally a biomarker is anything that can be used as an indicator of a particular disease state or some other physiological state of an organism.

A biomarker is a parameter that can be used to measure the progress of disease or the effects of treatment. The parameter can be chemical, physical or biological. In molecular terms biomarker is "the subset of markers that might be discovered using genomics, proteomics technologies or imaging technologies. Biomarker help in early diagnosis, disease prevention, drug target identification, drug response etc. Several diseased based biomarker had been identified for many diseases such as serum LDL for cholesterol, blood pressure, P53 gene and MMPs for cancer etc.

Uses for Biomarkers


For chronic diseases, whose treatment may require patients tobiomarkers take medications for years, accurate diagnosis is particularly important, especially when strong side effects are expected from the treatment. In these cases, biomarkers are becoming more and more important, because they can confirm a difficult diagnosis or even make it possible in the first place.  

A number of diseases, such as Alzheimer’s disease or rheumatoid arthritis, often begin with an early, symptom-free phase. In such symptom-free patients there may be more or less probability of actually developing symptoms. In these cases, biomarkers help to identify high-risk individuals reliably and in a timely manner so that they can either be treated before onset of the disease or as soon as possible thereafter.

In Kennedy’s Disease, our CAG count is an indicator of a gene mutation, but not a biomarker.  By the time twitches, cramping, high creatinine levels, etc. start showing up the progression has already began.

Warning:  Wednesday’s snap quiz could contain questions on biomarkers, so be prepared.

Friday, August 19, 2011

Veterans with Kennedy’s Disease

I published an article the end of last year on a Canadian veteran veteransaffairsCanada who was turned down for VA benefits.  If he had ALS he could  receive benefits, but not if he had Kennedy’s Disease.

This week I rVeteransAffairsSealeceived an email from a U.S. veteran with a similar story.  He is being treated at the ALS Clinic and V.A. Spine Center, but when he applied for disability benefits he was turned down.  This man is working with the Paralyzed Veterans of America and hopes to appeal the decision.

In the previous article, I wrote:

"… since ALS is the primary misdiagnosis for those of us living with Kennedy's Disease, the link, in my opinion, between the two is very strong.  I can easily say that 50-70% of us are originally misdiagnosed with ALS.  I have always called Kennedy's Disease the “poor man's ALS” because our progression is slower and life expectancy is close to normal.

ALS affects the upper motor neurons, while Kennedy's Disease affects the lower motor neurons.  However, many of the symptoms are closely related and that is why it is often misdiagnosed.  (Note: It wasn’t until the late 1990s that a conclusive test was made available for Kennedy’s Disease)

I believe this might be an opportunity, however, … something that he needs to investigate with the Veterans Administration.  There might even be a veterans association that can provide some advice and counsel.  They might also be able to recommend an attorney that has experience with these type issues.  This could open the door for several men living with Kennedy’s Disease to receive veterans' benefits should it be approved

KDA Logo Often appeals like this are difficult to win, but that doesn’t mean we shouldn’t try.  I would be willing to write a letter from the KDA to the Veterans Administration expressing the similarities in symptoms and the often subsequent misdiagnosis of ALS.

If you are a veteran, or know a veteran, with Kennedy’s Disease and are interested in determining if V.A. benefits could be made available for men with Kennedy’s Disease, please let me know (comment below or email).  There is strength in numbers (the greater the number the better the opportunity).

As always, I look forward to hearing from you.

Tuesday, August 16, 2011

Why are men so stubborn?

Okay, let me rephrase that.  Why was I so stubborn?
Living with Kennedy’s Disease is difficult enough, but when a man’s ego is involved the ‘living with’ process becomes that much worse.
I have written several articles about ‘acceptance’ and my ‘welcome’ statement on the right of this article ends with the comment that ‘acceptance is what I am working on today’.  As I look back over the years where I fought what was happening to my body, I truly wonder how different my life would have been if I would have swallowed my pride and just accepted Kennedy’s Disease for what it is.

Was I trying to be a martyr?

I had to endure self-inflicted suffering (mental and emotional) as well as pain to prove I could overcome Kennedy’s Disease.  At times I was almost like a martyr.  I would not share these feelings even with my family (including my wife) and closest friends.  I thought that ‘sucking it up’ and not expressing my concerns, declining capabilities and fears was some kind of badge of honor.
Boy was I wrong!  I experienced many falls and several injuries, fortunately most were minor, because I would not allow myself to accept that life is going to be different.  I also made excuses for not participating in certain events.  If I would have been honest with myself, as well as with others, about my physical limitations things would have been different … and mostly better.
This blog is almost like my penitence for all those years I would not admit, even though others knew, something was wrong.  In “The Nine Stages – Learning to Live with Kennedy’s Disease” I outlined the process a person must go through before being set free from the burden of facing living with Kennedy’s Disease alone.   

The eighth stage:  Acceptance

Acceptance does not mean happiness or bring comfort. Instead, you are now able to accept and deal with the reality of the situation. Life can once again begin to move forward. You find that you can easily admit to yourself and others that you have the disease and that there is no cure, but also saying things like, “It’s okay … I can live with this.”
In my 2009 article called “Denial” I wrote:
I will twist the meaning of the adage, "Pride cometh before the fall," to reflect how this period of denial was a dangerous time for me. When I found out that I had Kennedy's Disease, the last thing on my mind was sharing that information with others, especially my boss and co-workers. My pride (ego, insecurity, or whatever you want to call it) would not let me admit to anyone that I had the disease. I was afraid that by admitting it, the relationships with my boss and peers might change and it could possibly hamper my career. During this period, I experienced several falls while working including one that resulted in a broken bone. Every one of these falls could have been avoided if I had been honest with myself and with my boss and co-workers.

Your do not have to be alone

So, if you are struggling with accepting Kennedy’s Disease, I am asking that you sit down with you wife, significant other or best friend and just talk it out. 
  • Let her or him know how you feel …
  • Express your concerns and fears …
  • Explain how you want to be seen and treated …
  • Discuss how, with their help, you can move past this period in your life and start living again. 
It is a first step (it will seem like a huge leap), but it is a necessary one.  It is amazing how free you feel once you have just said, “I have Kennedy’s Disease.”
As always, let me know if I can help

Sunday, August 14, 2011

Why I’m Depressed

The last couple of weeks have been such a rollercoaster ride for most Americans.  Our government leaders having been playing politics again.  Instead of doing what is best for the people, they are just sandbagging and finger pointing.  The instability they have caused in world markets (questioning our credit  worthiness) makes it easy to become a little upset and worried.

Just when about everything that I saw on TV or read in the papers or on the web is “gloom and doom,” I received the following email.


Over five thousand years ago, Moses said to the children of Israel , "Pick up your shovels, mount your asses and camels, and I will lead you to the Promised Land."
Nearly 75 years ago, (when Welfare was introduced) Roosevelt said, "Lay down your shovels, sit on your asses, and light up a Camel, this  is the Promised Land."

Today, Congress has stolen your shovel, taxed your asses, raised the price of Camels and mortgaged the Promised Land!

I was so depressed last night thinking about Health Care Plans, the economy, the wars, lost jobs, savings, Social Security, retirement funds, the stock market fall, etc ... that I called a Suicide Hotline. 

I had to press ‘1’ for English.  I was connected to a call center in Pakistan. I told them I was suicidal. They got excited and asked if I could drive a truck......
Folks, we're screwed!


Laughter is the best medicine

It is said that “laughter is the best medicine” and I couldn’t agreelaughter   more.  I laughed when I read the joke the first time.  And, as I forwarded the email on to several friends I was still laughing.  While writing this article today I am smiling again.


We all need to laugh … some of us more than others

Mark Train said, “Against the assault of laughter nothing can stand.”

Wil Dieck mentions in an article on “relieving stress and anxiety” that:

“A healthy daily dose of laughter is an excellent method to relieve your stress and anxiety. Laughter can replace your stressful, anxious feelings with a sense of joy that gives you the strength to overcome the obstacles you face. When you laugh with your family and friends you also enhance your relationships.
In addition, laughter is one of the world’s greatest health secrets. Enjoying silly moments and funny jokes is a great method for overcoming the stress in your life and can help you feel more relaxed and less tense. Studies have shown that laughter may even promote a healing response within your body.”
Dieck also provides some tips on helping to relieve anxiety and stress:

  1. Make morning a happy time. Dedicate twenty minutes to whole-hearted laughter in the morning. For best results, practice this exercise with your entire family.
  2. Figure out what tickles your funny bone. This process of lighthearted discovery alone can increase your sense of joy and happiness almost overnight.
  3. Hang around happy people. Happy people like to laugh and they spread the bug of laughter. A healthy sense of humor is highly infectious.
  4. Find humor in your mistakes. One thing about being human is that we all make mistakes. Be willing to laugh at yours. Enjoy the humor of your humanity.
  5. Tell people the funny things that happen to you. Funny things are happening around you all the time. Squeeze every ounce of joy you can out of them by sharing them with others.

Three things that work for me


Young Frankenstein
  1. I find that certain movies make me laugh no matter how many times I watch them.  Two of my favorites are “Young Frankenstein” and “Blazing Saddles.”  Yes, they are silly and stupid, but they work for me.  My wife just shakes her head when I turn them on because she just doesn’t appreciate the medicinal value they provide me.
  2. Babies and young children (especially grandkids) are another excellent source of joy and laughter (combined with a great amount of love).
  3. Playing silly games with family and friends.  We just spent four hours with two other couples last night playing games like ‘Pass the Pig’, ‘Last Word’ and ‘BananaGrams’. We were laughing and smiling the entire evening.
What works for you?

Friday, August 12, 2011

“Handicap Accessible” doesn’t always mean accessible

Traveling safely and comfortably are two of the more difficult problems associated with Kennedy’s Disease as it progresses.  For me. I had to retire early because travel became out of the question and my job required a lot of travel.

One thing I found out early on was that many hotels believe a couple of grab bars in the bathroom makes the room “handicap accessible.”  Of course, I wasn’t savvy enough to ask the right questions either.  What I now know is:
  • It is important to find out exactly what the hotel deems accessible.
  • And, for you to explain what your needs are.


There is a good article at “Disaboom” written by Candy Harrington that a friend sent to me the other day.  “Finding an Accessible Room Beyond ADA Compliance” provides a couple of dozen bullet points about what to look for, what to ask, and who to ask.  I recommend that you print the article and refer to it whenever you are considering any travel.

Some Recommendations

I have listed below some of the recommendations mentioned in the article (and some of my comments):
    • Never just ask for an “accessible room.” Instead, list the access features you need.  (i.e., a roll in shower if tubs are no longer safe to step in and out of or an elevated toilet seat)
    • In the U.S., look for hotels constructed after 1992, the date the Americans with Disabilities Act (ADA) took effect.
    • Always call the hotel directly. On-site reservation agents often have first-hand knowledge about access features at their property.   (if you feel the front desk person does not know the answer, ask for the manager)
    • Ask the reservation agent to describe the access features of the room. Don’t settle for the broad description of “ADA Compliant.” Ask for specific access details.
    ADA Bathroom 
• Many properties have raised toilet seats that can be installed in any bathroom. Accessible toilets are 17-19 inches high, so if you need a higher one, ask about a raised toilet seat.  (or, do as I do and bring a seat riser with you … “tallette”)
• Don’t be afraid to ask for measurements. If door width is a concern, ask for that measurement. Don't forget about interior (bathroom) door width, too.
• If walking any distance is a factor, request a room near the elevator.
• Remember to ask the reservation agent if the accessible room can be blocked for you. If the answer is “no” or “usually,” then find another hotel.
• Bed height is not regulated under the ADA, so make sure to ask for bed measurements. Many properties are replacing their standard mattresses with high pillow-top models.
Travel doesn’t have to be a hardship if you plan ahead and ask the right questions.  Have a good trip!

Wednesday, August 10, 2011

Six month update on dutasteride

I just finished my 110 minute workout this morning and felt it was time to update everyone on my little experiment.  It is hard to believe, but the end of this week will be six months since I started taking dutasteride.

In reviewing my journal this morning, I noticed the last month has been a great month for me.  Almost every day I used words such as “good workout”, “easy workout”, “feeling extra strong today”,  “I have great energy today”, etc.  In fact, there was only one workout during the entire month of July where I used the term “a decent workout” meaning okay or fine.  Not once did I mention any decline in my energy or that I was experiencing any pain.

I averaged 110 minutes of exercises every other day in July and August (month-to-date).  Every day but one in July and all five exercise days in August I commented that the reps were easy or I felt strong that day.  Another term I used quite often was “good energy”.

What does this mean?  No, I am not cured.  But, it does mean that I feel I am far better off than a year ago in regards to strength, energy, pain management and confidence.  Hindsight being 20-20, I wish I would have started taking dutasteride a couple of years ago.  (Isn’t that always the way it is)

NIH Trial

On a similar subject, have you signed up for the Kennedy’s Disease exercise trial?  If you are interested, please read about it on the KDA website on the KDA News page for 06/10/11  (http://www.kennedysdisease.org/news).  Or go to the NIH website for more detailed information  (http://www.clinicaltrials.gov/ct2/show/NCT01369901).

Sunday, August 7, 2011

Throwing the baby out with the bathwater

In this morning’s paper there was an article from the McClatchy Newspapers in Ft. Lauderdale, Fl.  The title was “Report targets unnecessary power wheelchairs … 61% paid for by Medicare were not needed”.  

The article sites a July report by the Inspector General of Health and Human Services stating the chairs were not needed or not right for the elderly patient wasting about $100 million in a six month period in 2007.
These findings led to a 10% cut in payments and tougher regulations.  Furthermore, nine metropolitan areas in south and central Florida are testing a controversial new system for power wheelchairs and other medical equipment.  Suppliers must pass an accreditation process.  They hope this process will weed out many of the companies that are taking advantage of the elderly.  As part of the system, Medicare and the patients will pay 25-30% less for the power chairs.
I believe Medicare fraud, not just with wheelchairs, is a huge issue that no one has been able to get their hands around.  This problem is partly due to the patient’s inability or lack of desire to review and question charges made to Medicare on their behalf.   Medicare sends out statements every time a charge is made against a patient’s account.  There is a fairly easy process available to challenge any questionable payments.

Don't Penalize Everyone
That being said, I believe the real problem is that all rules and regulations are normally established for the very small group who take advantage of the system.  Probably 90-95% of all charges are legitimate.  It is the 5-10% that cause the problem for everyone else.  And, with the government trying to keep the dike from leaking, they rebuild the entire dam making it less user friendly and far less functional.
For example, the government does not recognize that some people might need a power seat on their wheelchair.  Chairs are designed to provide mobility for anyone that can no longer safely walk with a walker or cane.  The regulations are strictly designed to satisfy the mobility need.  However, transferring is never considered even though it is a mobility issue and safety concern.  I believe this happens because the people making the regulations have never been in a wheelchair or consulted with people that need the ability to have a power-assisted transfer capability.
As anyone in the later stages of Kennedy’s Disease knows, our arm strength weakens as much or even more than our leg strength.  We cannot easily transfer to the bed or toilet, for example, by sliding across on a board or using our arms to swing over.  I need a power chair to get around safely.  I also need a power seat to be able to transfer safely (and not cause my wife to hurt herself trying to help me transfer).  
A power seat is an expensive option on any wheelchair, but it is a necessity for some of us.  Quality of life should be taken into consideration when accessing the need for mobility equipment.  
Focus on the Corruption

Yes, we need to stop corruption within our Medicare system.  And, yes, medical necessity should be the determining factor for mobility equipment.  BUT, don’t penalize everyone that needs mobility equipment just because of a few fraudulent companies.  clip_image003Instead, focus on the corruption.  

And, take it one step further.  Stop generalizing the interpretation of necessity.  Allow the doctors and medical equipment specialists (i.e., physical and occupational therapists) to provide adequate documentation that a long-term need exists for a particular piece of equipment or accessory.  


I would even go one step further.  Establish a follow-up with the patient to review of the mobility equipment prescribed to make certain it satisfied their needs.  If not, go back to the specialists and hold them accountable for the recommendation.  Begin to suspend licenses, if necessary.  But, don’t continue to tighten the regulations to make it even more difficult to obtain mobility equipment.
I know I am just dreaming, but it would be nice to have at least one system that works the way it is supposed to.

Thursday, August 4, 2011

Some days the dragon wins

Twenty-some years ago my wife gave me this drawing by Jody Bergsma of a little sorcerer’s apprentice who is being sat on by a baby dragon.  An assistant is standing nearby with a scroll that says … 

Today’s Goal:  Capture a Dragon

And, the caption under the drawing is …

Some days the dragon wins

This picture has been a part of my life all this time.  It seems that I always seem to read it when I need a ‘little lift’.

In my business career I found it important to understand that I am not going to succeed every day.  Failures, in some respects, are as important as the wins … if I learn something from the failure.

In my personal life it is also important for me to realize that occasionally the dragon wins.  Things do not always go as planned.  Life has many unexpected turns and it is what you make of those times that separate you from those being eaten.

This picture has become especially important for me as the symptoms of Kennedy’s Disease progress.  The dragon is winning a little more often than I would like these days.  Yet, knowing that as long as I keep on fighting I have a chance of winning.  It is only when I give up that I truly lose.

And, recently I have revised my goal.  I am not just trying to win for me any more, I am also trying to win for my grandchildren and expected great grandchild.  Talk about a new and wonderful incentive!

some days
Fortunately, I am not a quitter.  Every morning I wake up and thank God that he has blessed me with another day to try to slay the dragon.

Working together … 
we will find a treatment or cure
… and end this dragon’s reign forever.

Wednesday, August 3, 2011

Are you listening to me?

Are you listening
I watched an interesting video the other day about “listening.”  Julian Treasure discussed “Five ways to listen better.”  It reminded me how communications has changed substantially through the years. 
  • We went from “word-of-mouth” to newspapers, letters and the phone.
  • We moved from letters to email and now “texting.”
  • We use to go to concerts and listened to the radio. 
  • We then moved on to buying records, tapes, cassettes and CDs.
  • And now we have gone from CDs to downloading our music and music videos to watch on our phones or PCs.
Somewhere in the process of this evolution we have lost some of our ability to just listen.   Some of this loss is caused by advancements in technology (a few are mentioned above).  Ear phones, ear buds, cell phones attached to the ear, you name it; times have changed.  A recent statistic reflects that 16% of all teenagers have a hearing disorder caused by listening to music and their cell phones at higher than normal volume levels.

The second sin

However, I believe an equal share in the decline of effective listening is caused because of multitasking.  How often do we really just sit down and talk without doing something else at the same time.  We know the dangers of texting or even talking on the phone while driving.  A few states are even considering banning texting or talking on a cell while walking or riding a bike on public streets.  Our attention span has been shortened to a point where many of us find it difficult to just perform one task and nothing else.
Try it some time.  Call someone and just talk.  Don’t eat, watch TV, read your emails, go through your bills, work in the garden, drive to the store, shop, or anything else.  JUST SIT AND TALK.

I tried it recently and noticed that within a brief period of time I was doodling … yup, doodling.  I didn’t even know I was doing it.

In the process of learning to multi-task we have lost the ability to focus on what we are doing.  This brings me back to the subject of “effective listening.”  How does one relearn something that was a natural ability for many years.

Ernest Hemingway said it best.  “I like to listen.  I have learned a great deal from listening carefully.  Most people never listen.”

Listening - conversation


In the video I mentioned, Mr. Treasure mentioned a technique for being a more effective listener.  He used the acronym RASA to help us remember the process.   
  • R = Receive
    • Listen actively.  Lean forward.  Be fully engaged in listening to what is being said as well as watching the person’s actions.  Don’t multitask.  Fore example, if eating, put your utensils down.
  • A = Appreciate
    • Show that you are engaged and listening by maintaining eye contact and responding with head nods or brief comments (i.e., yes, I see, interesting, or I understand).
  • S = Summarize
    • When the person has finished, summarize what you heard and what you understand.
  • A = Ask
    • Then ask if you captured the essence of what they were saying.  If not, ask clarifying questions.
Mr. Treasure commented on what happens when someone is fully engaged in the listening process.  A relationship or bond is formed between the speaker and listener.   And, the speaker gains a new level of respect for the person listening.

Another good list of skills to improve your listening habit is shown below.  You will note that many are included in the RASA example above.

Skills for listening better


Do as I say and not as I do

So, these questions have to be asked:
  • How do we expect our children  or spouse to be good listeners when we in fact are not good listeners? 
  • How often do we just sit and listen to our children or spouse without doing anything else at the same time?
  • What message are we sending to our loved ones when we do not effectively listen when they are talking?
Are you listening to me?

Monday, August 1, 2011


I was diagnosed several years ago with severe osteoporosis in the left lower leg and foot.  That diagnosis explained why I experienced broken bones in my left leg and foot after several falls. 
My orthopedic surgeon recommended that I take high-quality calcium tablets to help with the issue.  My GP recommended Reclast; a once a year drug taken intravenously.  I said I would think about it and asked if there was any literature I could read about the drug.

After reading the brochure, I also went online and read a lot more … the good, the bad and the ugly.  The biggest concern I had was the potential side effects including muscle weakness.  One thing I do not need is that.  I declined the treatment, but was still curious about whether I made the right decision.

A gentleman in our KDA Forum commented that he had the infusion.  The nurse, while administering the drug, told him she had seen it work with many patients and none had any side effects.  He felt fine afterwards.

Later he reported that he began to have some serious side effects the next day.  He started feeling tired and had aching muscles.  He than became nauseous.  For the next few days he commented that he had all the symptoms of a nasty flu.  His temperature fluctuated up to 102 degrees, he experienced a slight cough, aches and pains, and weakness along with mild nausea.  He mentioned that regular doses of Tylenol (600 mg ) seemed to help.

The doctor explained that he was having an allergic reaction to the preservative used in the Reclast infusion.  He said that the good news what that next year his body would be immune to the preservative and he should not experience these problems.

The gentleman recovered and is feeling fine again.  He did comment that he was uncertain that he would have taken the infusion had he known ahead of time what would happen.  He also mentioned that this was his personal experience and many people have no reaction at all.

osteoporosis growth

I guess I am a coward.  I am still not ready to test how my body will react to Reclast.  Calcium supplements sound even better to me now.