You just never know!

I had another article for today’s post, but this is a last minute replacement. 

We dodged a bullet!

At around 8:30 PM last night our little community was hit by a tornado.  Many buildings and homes all over the area are destroyed or badly damaged.  There are several deaths reported and many injuries, but fire and rescue teams are still searching homes and buildings for survivors.

The tornado came right over the mountain to our west and swooped down into the valley below us.  About 300 yards from our house, the tornado turned north and left a path of destruction and death for several miles. 

The Aftermath

Today, thousands of homes are without power or drinking water.  Communications are limited.  The public is being asked to stay home because of downed power lines and trees, road debris, and continued rescue efforts. 

We know of a few neighbors who worked through the night trying to locate survivors.  My wife and several other neighbors are helping to clean up some of the fallen trees and other damage in the area.  The death toll and injuries continue to mount as teams work their way through destroyed homes and buildings.

Things like this always seem so terrible when you watch them on television.  Living though it is something far worse.  We are thankful that the tornado missed us, but also grieving for neighbors, friends, and others in the community that are still having to come to terms with this destruction.

The whole thing just does not seem real!

Ramps; An opportunity to increase your freedom

Several years ago I found that stairs were just not going to cut it any longer.  One or two were still manageable, but anything more than that and if they did not have handrails on both side I was done.

At first we bought a portable (fold-up) ramp.  It was a little heavy, but it did the trick in many situations.  Since we bought this aluminum ramp, newer designs have emerged that are lighter and easier to manage.



When we moved to Georgia, however, the house we wanted had too many steps and my confidence level had declined enough for me to know we needed ramps.  The first ramp build was from the garage into the house.  This worked great because it was wide enough to handle a wheelchair should I need it, but it also had handrails on both sides.

Later I wanted access to our rear deck, so we built a wraparound walkway that was actually a ramp.  It is about forty feet long and slowly elevates to the height of the back deck.  This walkway opened up a the back yard to me.  I now have access to the deck from two rooms in the house and also from the driveway.



The front porch was another area that eventually became a problem.  Even though it was only one step, once I was using a wheelchair that step became Mount Everest.  A friend brought over a three foot by three foot grated aluminum pedestal ramp.  This has become a lifesaver many times because it is portable enough to take to family and friends’ houses that do not have wheelchair access.



If you are considering building a ramp for your house, there are plenty of resources available on the internet as well as associations that provide brochures on the subject.  “eHow”, for example has an excellent “how-to” guide for building several different types of ramps.

There are, however, some general rules that are good to know ahead of time.

• Building Permit:  Always check with the building code office in your community and your homeowners association (if you have one) to see if a permit is required.
• Proper Dimensions: 
• For a motorized wheelchair, the maximum slope is considered to be for every twelve inches (12”) in length, the ramp should not rise more than one inch (1”).  For instance, if you need a ramp that extends from the ground to the top, at a height of 2 feet, you would multiply the height in inches (24 times 12) and come up with 288 inches. That equals 24 feet, so you would plan a minimum of 24 feet from the beginning of your ramp to the entrance. 
• For a manual wheelchair or for walking, consider having a more gentle slope of 18” in length for every 1” rise.
• A good width is at least 42” wide with a four-inch curb along both side (planters can serve the same purpose and add a nice decoration).  If you will need help walking up the ramp (someone beside you), the width should be 48-54”.  If the width is a concern, consider the following as a minimum.  After curbs or planters, and railings and handrails are installed the very minimum width should be no less than 36”.
• Design:  Yes, you are building today, but planning for the future.  At some time a wheelchair might be needed so always consider that possibility in your plans. 
• Long ramps can be built in an ‘L’-shape or have a switchback in it. 
• Long ramps are less attractive than short ones and always try to consider a location that is not as prominent as the front of the house if possible.
• Construction Materials:  Poured concrete and pressure treated lumber are the best material and require the least maintenance. 
• Pressure treated woods are good, but require annual maintenance.  Concrete footings are best to minimize the woods contact with the ground. 
• Concrete ramps are more expensive, but they have a longer life and require little maintenance. 
• Products like ‘Trex’ (it has the appearance of wood and is coated with a nonslip surface) are a good choice because they require minimal maintenance.
• Landing Area:  Plan at least five feet of landing space at both the top and bottom of the ramp. 
• If the ramp changes direction (switchback or ‘L’-shaped) or is higher than three feet, include an intermediate landing if possible.
• Surface Materials: 
• Use a nonslip deck paint on wood ramps. 
• If using concrete, use a stiff brush (side to side strokes) while still wet to create better traction.
• Handrails:  Railing should be on both sides and provide sturdy handrails between 36-38” high.  Handrails must be continuous and secure as well as provide at least a 1½-inch space between the rail and a wall.

Should you have other thoughts and suggestions, please comment below.

Postural Drainage … What is that?

As many of us age, excess mucous and saliva are more difficult to clear from our mouth, throat and lungs.  Pneumonia becomes more of a concern because we cannot clear out lungs as easily as others.  Aspiration also becomes an issue for the same reason. 

When any of these issues mentioned above become an problem, postural drainage (PD) can usually help.    I have used postural drainage several times when clearing the lungs became a problem (severe cold or the flu).  The technique combined with Mucinex makes breathing a lot easier.

• What it is:  Postural Drainage is putting yourself in certain positions so the force of gravity will help drain secretions (mucous) from your lungs.

• Why do you do it:  Postural Drainage is done to improve your lung function by removing excess secretions allowing for easier breathing and improved oxygenation of the lungs.

• When should you perform it:  The best time is the early morning before breakfast.  This will help clear secretions that have built up during the night.  Another good time is about an hour before bedtime to help you sleep easier.  It should not be done immediately after a meal.

• How long does it take:  Depending upon the build up of secretions, anywhere between fifteen to thirty minutes.

• What will help improve the drainage:  Percussion is very helpful to breakup the mucous that cannot be easily drained.  Percussion is the clapping on your chest and back with cupped hands.  The cupped hands cause vibrations that help to loosen the secretions.

• What supplies will I need:  Towel, pillows, your bed, a chair, and tissues.  If percussion is performed, a caregiver will also be needed.

To learn more about Postural Drainage, check out these resources and also discuss the technique with your doctor:

• Introduction to Postural Drainage
• Postural Drainage Positions
• Postural Drainage Techniques

Please let me know if articles like this are helpful.  And, if you have used PD before, what other tips will help the newcomer to get the most out of the process?

Survival of the Fittest

Over the last two months I have spent a lot of time watching the eagle cams in Iowa and Virginia.  It has been fascinating watching the parents take care of their chicks (eaglets).  The eagle cam in Virginia has a live moderator to answer questions.  I have learned a lot about eagles and their young through this interactive program.

Two question that are often asked by viewers are:

• What happens if the eaglets are not good hunters?
• What percentage of the eaglets will survive the first five years?

This brought to mind how fortunate we are today.  Most of us know parents, grandparents or uncles that have or had Kennedy’s Disease.  Life was much more difficult for them.  Besides often being misdiagnosed, the problem of just maintaining a quality of life was more difficult.

Can you image what it was like living with Kennedy’s Disease in the middle ages … or, the 17 and 1800s … even the early 1900s.  Most houses were two or three stories high without any bedrooms on the ground floor.  Every place had steps … sometimes many steps.  There were no handicap accessible building or facilities in those days.  Canes were available, but I am not certain when walkers first became available.  And, wheelchairs … have you seen them in museums and movies?



My mother’s brother had Kennedy’s Disease.  That is an assumption on my part because know one knew for sure in those days.  All they knew was that he became progressively weaker and required a wheelchair in his forties.  He lived on a farm with lots of steps, a gravel sidewalk and driveway, and dirt paths.  Life must have been very difficult for my uncle and his family.  The world was just not very accommodating for people with a handicap.



I think of my van, our house, bedroom, bathroom, and shower.  Also, office buildings, airports, restaurants, movie theaters, shopping centers, etc. … these places are all handicap accessible.  There are very few places that I cannot access today.  My oldest brother and sister always said I was spoiled.  Perhaps they are right … thank goodness!

Fortunately, I do not have to compete with healthy men for food and shelter.  Also, Social Security, Medicare, the MDA and KDA, as well as other state or local organizations are available to help those of us needing assistance today.

Because of all of these things,

we not only can survive,

we can flourish!

We are one big family

Every week I receive several emails from people looking for answers.  Often, in the course of our interaction, we develop a relationship.  These people share information about their health situation, but they also tell me about their job, their family and their life as well as how Kennedy’s Disease is effecting them physically and emotionally.  



These last couple of weeks have brought this ‘relationship’ that we form to my attention again. 

• A wife of a person with Kennedy’s Disease shared her wedding picture and discussed how difficult it is seeing the progression of the disease in her husband and his brother.  In subsequent emails she shared more information and asked if there was anything else they could do to help minimize the progression.
• A man in England asked if the symptoms he is experiencing are similar to Kennedy’s Disease.  In the process of asking, he related a little of his family history as well as how much he missed playing tennis, basketball and other sports.  I also found out that one of his dreams (owning a farm) had to be given up as the disease progressed.
• A woman in China wrote to share her pain in seeing her husband deal with Kennedy’s Disease.  She then wanted to express her empathy for all of us living with this health condition.
• A man who cannot get his doctor to test for Kennedy’s Disease was looking for more information.  His doctor told him to look on the internet and try to identify health issues that had similar symptoms.  While sharing his symptoms, he also shared his fears.

This weekend I took a moment to go back through my email archives for this year.  I was amazed at the number of family photos that accompanied the emails.  The old adage that a “picture is worth a thousand words’ is so true.  Being able to visualize the person and his/her family makes the email much more personal.




And, it makes me realize that we are one big family spread across the globe.  We are a family needing to …

• share our stories
• learn from one another
• provide support and hope 

It is a beautiful world that we live in

Thank you for sharing and caring

Two month update on taking dustasteride

Time flies …  It is hard to believe that a little over two months ago I started taking dutasteride.  I reviewed my daily journal this morning and continue to be ‘positively’  surprised.



I am sure you remember that I was impressed the first couple of weeks.  I could sense some positive changes happening.  At the same time, I thought, and occasionally still think, that it could be the ‘placebo effect’.  Whatever it is, however, the experience has been very positive. 

My long exercise program has grown to 90+ minutes every other day.  The number of reps I am performing is up a minimum of 20% and in some cases up 50%.  I find that I have to just stop an exercise, because I am not fatigued and the muscles do not seem to be any weaker.  The strongest muscle groups are the quads and the shoulders.  I have also increased my every other day routine by 20+%.

I was trying to explain to Dr. Fischbeck the other day the new sensation I have been experiencing recently.  The muscles feel different.  They feel stronger.  I feel more in control … something I have not felt in some time.

I am experiencing a kind of tightness (a positive statement) in my major muscle groups.  After my exercise program, I know I have exercised, but I do not feel fatigued.  I am not cramping.  My muscles are not twitching all over.  They are just there (if that makes any sense at all).

I am also wondering if the benefit I am seeing is because I am exercising daily.  If someone did not exercise the muscles, would they feel what I am?  Whatever is happening, it has been all positive from my perspective.
I realize the mind can play games on you and the power of the mind can accomplish almost anything, but … for what it is worth, this feels like the real thing.

I’ll keep you advised of my experiences, both good and bad.

A webinar worth attending

Occasionally I receive an email or announcement that is better than article I could write for the day.  Yesterday morning was such a case.  The subject of the MDA webinar is one near and dear to my heart.  I would recommend that if you have the opportunity, attend the session.

Knowing Your Rights & Understanding How the Americans with Disabilities Act (ADA) Impacts You

MDA is proud to offer an expert-hosted public webinar series for the MDA community. This installment, “Knowing Your Rights & Understanding How the Americans with Disabilities Act (ADA) Impacts You,” will be hosted by Robyn Powell, disability rights program manager with the Equal Rights Center. Please join us as we discuss the resources, challenges and successes regarding these issues and the laws that protect individuals with a disability.

Topic: Knowing Your Rights & Understanding How the Americans with Disabilities Act (ADA) Impacts You
Date and Time: April 26, 2011, 4 p.m. Eastern Daylight Time; 2 p.m. MDT; 1 p.m. PDT
Event password: advocacy1
Event address for attendees: https://mdaevents1.webex.com/mdaevents1/onstage/g.php?d=666443449&t=a

Interested individuals will need to pre-register to attend this session. To do so simply:

1. Click on the event link above.
   
2. On the events page, scroll down and click on the “register” button.
   
3. On the registration page, enter the registration password and click “submit.” For this session, the registration password is advocacy1.
   
4. You will be taken to a page where you will be asked to enter your name, email address and mailing address, and click “submit.” An automatic email will be generated and sent directly to you.

If you have questions about signing in and/or registration, please contact Alicia King at (202) 828-8560.

Note: Due to the large volume of callers and the amount of background noise associated with these calls, the lines will be muted during the presentation. We highly encourage you to submit your discussion-related questions in advance to advocacy@mdausa.org. They will be submitted directly to Ms. Powell and addressed in her presentation.


As any of my regular readers know, I have written several articles about the ADA and your rights under the ADA.  I feel it is in the best interest of all of us, whether disabled or not, to understand the rights of a disabled person.   

A Natural History of Kennedy’s Disease Revisited

Last spring I published a few blog articles on two of the most interesting studies on Kennedy’s Disease I have found.  The studies helped answer many of my questions as well as fill in some gaps as to why I was an earlier onset.

If you have not read these two research reports, I highly recommend it.  Furthermore, the blog articles mentioned below summarize these reports and try to make them more understandable for those of us that are not researchers.



The Natural History of Spinal and Bulbar Muscular Atrophy was an interesting read and something that I still read occasionally.   It is probably the most comprehensive report I have read on Kennedy’s Disease because it studies 223 patients.

• After reading the report, I published my first article, The Natural History, that summarized my key learnings.  A couple of weeks later I followed up with another article called Being a 52 is no excuse.

Another good report is the one from the NIH clinical trial called Clinical Features of Spinal and Bulbar Muscular Atrophy.   This research paper expanded upon their findings during the two year clinical trial of dutasteride with 57 patients. 

• After reading the paper, I wrote the Clinical Features of Kennedy's Disease blog article once again summarizing key learnings. 

You are not alone

When you first find out you have this rare condition, you often feel all alone in this world.
 

Accepting that you have Kennedy’s Disease is often difficult.  So it is natural that you want to reach out to find others that also live with the condition.  Unfortunately, this is often difficult.  Yet, it is important because it helps us move towards acceptance. 

For many of us, knowing that others have this condition and they are surviving helps.  We also need to hear from the “horse’s mouth” (others with the disease) that it is okay to feel the way we do.

Often it is the spouse or a caregiver that makes the first inquiries.  And, when a person reaches out for support, they immediately run into problems.

• They find there are very few people who have ever heard of the disease.
  
• Another issue is that it is almost impossible to find a local support group … some place where you can talk with others that have the same condition … is very difficult, if not impossible.
  
• To further complicate the problem is your family doctor probably has never treated nor even even heard of the disease.  (I had to educate three of my doctors)

So where do you go when it is finally time to reach out?  For me, it was the Kennedy’s Disease Association and its twice a month chats.  When I first joined the chat room I found it difficult to open up.  I wanted to come across as being strong (I can handle it) because I had not totally come to grips with what having this condition means.
 


What I found in those first few chats were others, just like me, that were seeking answers and support as they moved towards acceptance.  They were also looking for a place they could express their concerns and fears without alarming the rest of the family.  And, most importantly, I wanted to hear from doctors and researchers that there was the possibility of (hope for) a treatment or cure.

Today, I am probably considered an “old salt” (a Navy term).  For ten years I have been attending these chats and participating in the KDA forums.  Yet, these chat rooms and the forum are still important to me.  They are not only educational, but they are a way to help others as well as seek answers and socialize (make friends). 

I know that I am not alone in my quest.  I also know that others have found ways to survive and thrive while living with this condition called Kennedy’s Disease. 

And today, I just wanted to say that …

“you are not alone.”

MDA Clinics … tell them what you think

I have written about the MDA before because I feel it is an other important resource for those of us living with Kennedy’s Disease.



If you are not a member of the MDA, I would strongly recommend that you join.  They have several good services available and some knowledgeable resources.  Below are some of the services that I use today.

QUEST MAGAZINE

Quest magazine is a good source of information on current research, resources and services.  If you are not a member, you can access Quest magazine online by following this link (http://quest.mda.org/).  The following link will take you to their archives (http://quest.mda.org/back-issues). 



MDA CLINICS

Another good benefit for MDA members is the MDA clinic.  Most areas of the country have a clinic within a hundred miles and if you are in or near a larger city there is most likely one that is local.  Most neurologists that work at these clinics are aware of Kennedy’s Disease.  And, most MDA staff members are familiar with Kennedy’s Disease and aware of your special needs. 



If you have had a positive or negative experience at a MDA clinic, the MDA has a short (5 minute) anonymous online survey to help the organization improve their services.  I highly recommend that your complete the survey even if you are totally happy with your clinic experiences.  The link to the clinics page is http://mda.org/clinics/.  On this page you can find a clinic near you, review clinical trials, review available services, and complete the survey (the gold box on the right “Tell us about your MDA Clinic”). 

LOAN LOCKER

Another service that is quite useful at times is the MDA loan locker.  People donate their slightly used mobility equipment and other handicap equipment/accessories to the MDA.  They are refurbished and made available to members.  For example, if you want to try out a manual or power wheelchair, or, if you are traveling and need a manual or power chair at the destination, the MDA might be able to accommodate you.  There is far more than just wheelchairs at these lockers.  Each regional loan locker is different as to equipment that is available.  Check with your local or regional office to find out more. 

FIND AN OFFICE NEAR YOU

Go to http://mda.org/ and put your zip code into the box near the top that says, “Find your local MDA office.”

LET OTHERS KNOW

Also, let me know in the comments section below of your experiences with the MDA.  Your thoughts and opinions might be helpful for others especially if they have never used any of these services. 

Take a moment and vote today to help the KDA

There is some excitement at the KDA today.  Susanne Waite, KDA President Emerita and co-founder, has made it into the Top 10 and is a National Finalists for the Energizer "Keep Going" Hall of Fame Contest!    You can read the story by following this link: Coarsgold Woman Nominated for Charity Work.  The Kennedy's Disease Association will be receiving a $1,000.00 check for Susanne making it into the Top 10 Finalists!

Now the real work begins!

I am asking all my readers to please  take 30 seconds to vote today and every day through May 13th.  Click on the link below cast your vote now: 
www.energizerkeepgoinghalloffame.com/Finalists.aspx?finalists=SusanneWaite

You can only vote once per day, but you can vote every day through May 13th.     

The Energizer website will ask for your name and an email address.  Energizer states this is not being collected for any marketing purpose, but is their way to verify that only one vote per day per person is being registered. 

If she wins the Grand Prize - an additional $5,000.00 will be donated to the KDA by Energizer, Inc.
The remainder of the $15,000 prize, Susanne promises to divide up amongst these other non-profits:

• American Cancer Society
  
• Alzheimers Association
  
• Veteran's Association
  
• SPCA
  
• Central Valley Food Bank - 24% of those living in the Fresno area go without a meal each day
  
• Manna House
  
• Poverello House
  
• Terry's House
  
• Boys & Girls Club
  
• 4-H/FFA

Remember to vote every day.  Also, please forward this email on to your friends, family, coworkers and contacts and encourage them to vote each day now through May 13th.

Thank you for your help.

In search of happiness

I read Ms. Jaksch recent article on ‘happiness’ (a portion of it is found below) and it struck a chord.  I believe she is right on track.

Happiness as defined by the dictionary as … enjoying, showing, or marked by pleasure, satisfaction, or joy.



So much has been made of being happy or finding happiness.  Why is seeking happiness or concern over someone’s happiness so important?  As Ms. Jaksch states in her blog, there is so much more in life than just trying to be happy.

_______________________________

Is Happiness Overrated?
By Mary Jaksch of Goodlife Zen

“Are you happy? And are you getting happier? If not, some people may say that you’re failing.  After all, happiness has become the primary goal in life according to the self-help movement. …
 
Is happiness a worthwhile goal in life?
 
Let’s take a look at key moments in life. Reflect for a moment on which experiences blew your mind. For me, the most wonderful, emotional, and exciting moment was giving birth to my son, Sebastian. Although it was one of the highlights of my life, I wouldn’t call it a ‘happy’ time. It was painful, terrifying (when Sebastian’s heart rate suddenly slowed just before he was born), joyful, overwhelming, exhilarating, sublime, and funny (when the new father walked out of the hospital wearing a blood-stained shirt and an inane, wrap-around-grin on his face). Yes, the word ‘happy’ doesn’t begin to describe this amazing experience.
 
Much more important than feeling ‘happy’ is when we feel alive – right down to our little toes. When we are filled with creative energy. When we love deeply. When we feel our pain. When we laugh. When we cry. When we feel a deep sense of joy. When we belong. When we feel alone. When we are in awe. When we are struck by beauty. When the simple things become precious.
 
All of that taken together is so much more than to be ‘happy’.”

_______________________________

I recently read an article about a study that revealed people today are not as happy as they were twenty years ago.  From my perspective, I would say that, if asked, a majority of people would say they are not happy at any particular moment.  Does that mean they are sad or angry, NO!  It just means they are not ‘happy’ at that time.  

If we spend our life seeking ‘happiness’ we are missing out on so much.  We also will continually analyze everything that is happening in our life only looking for what will make us happy.  And, by doing so we will miss so much of life’s experiences.

I recently wrote my daughter about a time in my life where I was very ‘content’.  I looked up “content” afterward and it means ‘comfortable with’, ‘satisfied’, or ‘not desiring something more or different’.  It did not mention the word ‘happy’, however.

At that time, the little things in life did not seem to bother me.  If someone cut me off while driving or was late for an appointment, it was okay.  The world was not going to come to an end just because I was slightly inconvenienced.  Was I happy?  Probably not any more than I am today, but I was also not sad or angry or unhappy.  I was ‘comfortable’ with what was happening with my life.  I was experiencing life as it unfolded and not looking for what would make me happier.



I feel that Ms. Jaksch’s point is there is something far more important than wondering if we are ‘happy’.   There is nothing better than the feeling of being alive.  Pain, love, joy, sorrow, etc. all bring out emotions that further this sense of being alive … of being a part of this wonderful world.  It is living your life to the fullest. 

It also means being thankful for this life that you are living.