Thursday, July 29, 2010

She could teach me how to run

Several times a year I receive emails from family members that are living with Kennedy's Disease. They are normally from teenagers and young adults who have a father with the mutation. They are trying to fill in the gaps of what Kennedy's Disease is, how bad will it get, is there anything they can do to help, and occasionally asking why won't their parents talk to them about this. Yesterday I received another email from the son of a man with Kennedy's Disease. Following his question below is my answer (amplified for this blog).

"Thank you for all the time and effort put into your blog. My father was recently diagnosed with the disease and your blog was a wealth of insight, information, and comfort.

From a selfish position, I was wondering if you have any insight to what your children (or anyone else's children who have been affected by the disease whom you are in contact with) have gone through. It is difficult to accept that your father will become physically weaker over time. Any help or insight into coping with that and assisting both parents would be greatly appreciated."

The subject of "children" is an interesting and complex one.  The answer really depends upon the age and maturity of each child and how open the parents are to discussing the situation.  For example, my two grandkids (many years ago when they were pre-school and early grade school age) asked a few questions (why I could not get on the floor to play with them, etc.). When I explained the problem to their satisfaction, they just seemed to acknowledge and accept that grandpa was a little different (my wife has told me that for years). They thought I was still okay, however, because I bought them ice cream when they were not supposed to have it. 

I used a similar strategy recently for the two young children of friends who were also curious.  (Of course it does not hurt that I have a cool wheelchair and I take them for rides)

The explanation I gave these youngsters was that a part of my body (something inside me) is broken. Doctors do not have a way to fix it right now. Until they can fix it, my muscles just do not want to work the way their muscles do. I also explained that is why I use a wheelchair because it is difficult for me to walk. I told them no matter how weak my muscles became, I would always be their friend. I further explained that even though I can no longer pick them up, I still give great hugs (and then asked for one from each of them).

After listening to my explanation, our friend's daughter replied that she is a good runner and is very fast. If I wanted to, she could teach me how to run (the innocence of a child). 

I have found that the older the child is, the more difficult it is for him/her to accept the situation. I believe this is because he/she see (or imagine) the suffering the father is going through and the strain it has placed on both parents.  Additionally, older children and young adults have seen the progression of the disease over several years and the devastating impact it has had on the father.

My advice for children remains the same (changed slightly depending on specifics). In every aspect except for mobility and some strength/dexterity issues, your father is still the same man he was before Kennedy's Disease.  Yes, he is traveling through uncharted waters and he is struggling with acceptance issues and concerns for the future. However, he is still the father that raised you and he will always love you. These things will never change.  If you treat him differently or feel sorry for him, you are doing him and your relationship a disservice

My final recommendation is that you talk with him ... ask him questions and express your concerns.  He might not be ready to talk about it yet, but he needs to know the uncertainty/fear you are experiencing and that you want to talk with him more about this health issue when he is ready.  In addition, you mother is learning a whole new set of skills with the progression of the disease.  Do not be afraid to bring the subject up with her also.  She also needs your support also. 

Of course, this is my personal opinion based upon my experiences.  It is not a professional opinion and I have no training in this area.  If you continue to struggle with this, I would recommend some counseling.  A professional can help you come to terms with your concerns and perhaps help bridge the gap between the fears/concerns and the reality of living with Kennedy's Disease.

I hope this helps.  If you have other questions, please do not hesitate to ask.


Readers, I could use your help with today's topic. Most of us living with Kennedy's Disease probably have some experience with this subject. Please consider adding your two-cents in the comments section below; or send me an email and I will add your thoughts to this article (anonymously).
  • How did you explain the experience to your children (grandchildren)?
  • What age(s) were your children (grandchildren) when they first began asking questions?
  • What were their greatest concerns at the time?
  • As they became older, did they want to know more about the disease? If so, what were their follow-up questions?
  • If you had to do it over again, what would you do differently?
  • Do you have any other recommendations for managing this situation?
I would value your thoughts on this important subject. Thank you.

Tuesday, July 27, 2010

A Balancing Act Like No Other

If you have been reading my blog for more than a few months, you know that I believe the unsung heroes in this world are caregivers. In today's article I will use the example of the married caregiver knowing very well that most of what I discuss applies to all caregivers.

Being more mature (an old codger) I remember the entertainment shows like Ed Sullivan and Red Skelton. They brought on a variety of acts including jugglers and plate spinners. Everyone has probably seen the plate spinners that begin with one plate and spin it on a stick. Then they go to the next one and the next spinning those plates while occasionally having to go back and re-spin the original plates. If the person spins the stick to fast or hard, the plate will go flying. If the plate spins to slow, the plate will lose its balance and crash to the floor. It takes a keen eye, patience, and some degree of skill to keep the plates spinning.

Balancing work, children, as well as a social and home-life is difficult enough for the average woman today, but now add in the role of caregiver and it becomes even more complicated and stressful. It is like adding another bowling pin to juggle or another plate to spin when you are already at your limit. The job in itself wears on a person, but when you add in the mental and emotional aspects that a caregiver has to put up with, it becomes close to impossible to pull off. Being that there is no "Caregiver 101" course at the local college, the role is totally "on-the-job-training."

Probably the most difficult aspect of being a caregiver is the fine line that she has to walk between being helpful or smothering. The caregiver not only has to be helpful and supportive, she also has to be a mind reader. The dozens of questions she has to ask herself daily include,

  • "Do I offer to help or can he do it by himself?"
  • "At what point do I offer to help?"
  • "If he tries to do it by himself, could he get hurt?"
  • "Should I just do it and put up with his criticisms afterwards?"
  • "If he tries it and fails, will he blow up or will I receive the brunt of his anger?"
  • "If he tries and gets hurt, can I still get everything else done (job, children, housework, etc.) while helping him through the recovery?"
I always talk about developing "win-win" situations. Unfortunately, the role of the caregiver is often not that easy of a choice. She is dealing with a man's ego, insecurities and his machismo. They are fragile, no matter what the situation, but then add in the affect of the progressive wasting away of the muscles and it becomes an almost impossible situation for everyone in the house. I believe that most men living with Kennedy's Disease at some point (and perhaps frequently) question their value in being the breadwinner, father figure, husband and man of the house. This especially becomes apparent when challenged with a chore that the man use to be able to accomplish, but now finds it difficult if not impossible to do. Talk about frustrating.

Knowing when to offer to help or just walk away is not easy. Add in all the other responsibilities a caregiver goes through and you can begin to imagine the choices she makes every day ... often without so much as a thank you. Yet, somehow things get accomplished and life goes on ... mainly because of that wonderful woman who just happens to love you.

This post is my way of saying "THANK YOU" to my wonderful wife and to all those other caregivers out there. Without you, life would be extremely difficult, if not impossible. On behalf of all of us men living with Kennedy's Disease, we apologize for those times that we lashed out in anger because you were the only one in the room. You are all saints in my book.

Sunday, July 25, 2010

Tuesday I had an unpleasant surprise

I thought I had outgrown them. They are something I have not missed at all. Now that it happened, I am concerned that maybe I was wrong and you never really do outgrow them. Perhaps this was just a fluke ... a once in a decade event. Or, maybe I was just blessed with 10+ years without any.

You know what I am talking about; MUSCLE CRAMPS! Yes, those terrible cramps that wake us up in the middle of the night and would often ache for days afterwards.

Tuesday morning I began to have cramps in my right triceps. By Tuesday noon I was in a lot of pain and constantly massaging the ever-intensifying cramps. By late afternoon, my right upper arm was very sore and almost any movement would cause another cramp. By bedtime the right shoulder, wrist and hand were also sore probably because of constantly trying to find ways to relieve the cramping. The strange thing is that it has been so long since my last serious cramp that I had almost forgot how intense they could be. I just assumed that since so many of my muscles had atrophied that the cramps could never be this intense again.

Tuesday night I was concerned what might happen if I have cramping during or after my Wednesday morning full workout session. I took one Ibuprofen tablet that evening and hoped the aching would dissipate. Well, fortunately, it worked. I woke up without any pain and have not had any further cramping. My Wednesday and Friday exercise programs went very well ... without any pains or concerns. My strength seems to be fine also.

I still find it strange that it has been years since I experienced any severe cramping. I need to watch this closely to see if there is any correlation to muscle strength or any other cramping in that area. I am hoping it was just a fluke ... that once in a decade event I mentioned earlier. I sure hope so, because they really are not much fun.

Do any of you older codgers still have muscle cramps? If not, when was the last time that you remember having a severe cramp?

Thursday, July 22, 2010

Frustration is the anchor that keeps us from setting sail

This last week two people have talked about their frustrations with living with Kennedy's Disease. This is definitely an issue with many of us and is something that is difficult to overcome. I did a search through my blog posts and found there were numerous articles (or portions of articles) that focused on this issue of frustration. I read some of these articles on frustration and acceptance and picked out some key points that I want to reemphasize today.

  1. "Frustration" "Sometimes I become frustrated because I want to help more, but I am limited in the ways I can provide assistance." This is how I feel when someone comes to me for help and I just cannot quite provide the right words or support.

  2. "Prerequisites are required before moving on" "Letting go is definitely something that does not come easily. Most people want to hold on to what they have or even improve it in some way. Letting go or releasing something we cherish is probably the most difficult thing most of us will ever have to do. For example, most of us tend to take our health for granted ... especially when we are young. I know I did. As we mature, however, and are around people with health issues ... especially those we love ... reality begins to set in. Health is a blessing and a daily one at that because we never know what tomorrow will bring. Part of the difficulty of accepting our current condition is the fear of what tomorrow will bring. Fear of the future (of what might come or might lose) is most often the reason we do not want to let go. We want to hold on to today and even wish for that miracle that will bring back normalcy (as we knew it). Even though I consider myself a somewhat happy person, until I can let go (truly accept my condition), I can never really move on (find true happiness)." What I am talking about here are "false expectations" and "acceptance." Trying to hold on to what we were, or currently have, is a losing proposition and one that will always end in disappointment and frustration.

  3. "Patience is a Virtue" "I cannot blame Kennedy's Disease for my loss of patience. I believe that a lot of the problem stems from me not mentally and emotionally adjusting to the fact that I am no longer the man of the house. More importantly, I need to adopt a positive mental attitude when it comes to any kind of project or routine. My mantra needs to be something like: Patience fosters acceptance … and … Realism tempers expectations. Above all, I need to remember that, "Impatience and unrealistic expectations result in frustration and anger." The key message is this last sentence. Dr. Thomas Hora teaches that "There is no should or should not; there is only what is." I get into trouble because I believe that I - should - still be able to do something. If I would take the time to examine my current capabilities before beginning some task or project, I would be more accepting and comfortable with my current capabilities and expected results.

  4. "What the heck is PMA and why is it important" "This too will pass is an important saying to me, now, more than ever. If I do become "bummed out" or negative, just telling myself that this feeling will pass helps loads and starts me on the way towards a more positive tomorrow. This too will pass is like the direction sign at a crossroad in life. Do I take the negative way or the positive way? What way will be easier in the end?"  I believe I have a positive mental attitude. That being said, there are still times that I become frustrated. Telling myself "this too will pass" helps me recognize that the frustrations that I am currently feeling will soon be gone. Knowing that the frustrations will pass also allows me to look ahead rather than dwell on the past or current situation. It works better for me than counting to ten.

  5. "Be kind, for everyone you meet is fighting a hard battle" "I also believe that nothing comes into existence uninvited. Everything that happens in my life is a potential learning experience depending upon how I respond to the situation. I further believe that these erroneous beliefs and misconceptions that I still carry with me are being tested repeatedly until I eventually understand and accept reality."  When I am frustrated, the saying that "nothing comes into existence uninvited" helps me recognize that I have fully accepted my current situation. Taking a moment to understand what brought on the current frustration or anger is helpful. It normally is not the result of what just happened. The frustration or anger is usually the result of something (or several things) that happened in the recent past that I have not truly accepted yet.

  6. "The Never-Ending Learning Process" "Feeling overwhelmed is something most of us with Kennedy's Disease have experienced. I have often said that the mental and emotional aspects of the disease are as difficult to handle as the physical ones. Frustration over not being able to perform a simple task is something that I still have not learned to live with." This sensation of feeling overwhelmed is usually the result of having unrealistic expectations or not being able to say "No" when asked to do, or participate in, something. It often results in more frustrations. Dr. Hora teaches that "Yes is okay and so is No." We should not feel that we always have to say yes when asked to do something. It is also okay to say no.

As you can tell by the length of this post and all the previous posts on this subject, I am still working on this process of accepting who I am and what I can do. I am not certain I will ever reach the point of "total acceptance," but I sure hope so. Until then, I will have moments of frustration and anger.

I would be interested in knowing how you deal with this issue.

Tuesday, July 20, 2010

The only disability in life is a bad attitude

Several years ago I read this Scott Hamilton quote and thought it was perfect. At the time, Scott had a brain tumor and cancer. He did not let that hold him back, however. He eventually beat the cancer and today continues to write books and inspire others through his speaking engagements and philanthropy.

The dictionary defines "Disability" as a condition that makes it difficult to engage in the activities of daily life. If someone has a bad attitude, they are definitely 'no longer able' to engage in normal daily activities.

Attitude plays such an important part in our lives. John, a friend and member of the KDA board of directors is another one of us living with Kennedy's Disease. He is also a man that always seems to have a positive perspective on life. He just never seems to get down. I am often amazed at how he has the ability to handle adversity and, more often than not, put a humorous spin on the situation. John also has this attribute that he does not take himself too seriously. He is fun to be around and someone who always seems to be there for you if you need him. He is definitely not disabled.

In our family, when someone comes down with a "case of attitude" we say he/she "got ugly." I never really thought too much about that saying, but it is rather descriptive. If someone "gets ugly", they shut down and refuse to communicate. They often make everyone else around them gun-shy ... not wanting to be on the receiving end of the negativity.

I have been known to "get ugly" once or twice in my life. When that happens, I am not a happy camper. It is a shame that when I do "get ugly" that I am blinded from seeing what my attitude does to others. If I wallow in self-defeat and continually feel sorry for myself, what have I accomplished? Have I proven anything other than finding out that I am a person no one wants to spend time with? Am I any better off by continually venting and showing others what a butthead I am? And, most importantly, does my poor attitude change anything?

What is also interesting is that when I see someone else that I care for with a bad attitude, I want to find out what is wrong and help them through it. I want them to open up and tell me what is bothering them; hoping that we can talk it out. At the time, unfortunately, the person is usually not very receptive because he/she finds it easier to just shut down and wallow in the mire.

The other day I came across something that I wrote twenty-five years ago. Those were the early days when I had something to say, but was not sure how to say it. I have no idea what was going on in my life at the time, but this piece seems to fit perfectly with the topic.

It's been a long time since we walked together
Is it because I lost my way
I keep asking why you deserted me
when I need you the most these days

We were inseparable friends once
and then you went away
Am I so different now than I was then
or are you just waiting for me at the next river bend
Is this daily hell I go through
the penitence I must pay
I know this pain would all be forgotten
if you would just visit me again today

If you were at peace with yourself, it would be difficult to have a bad attitude.

Sunday, July 18, 2010

Looking Back Over the Last Year

I was reading an article on blogging the other day that commented that many newer blog readers do not go back and read your earlier posts. Since I have written 165 articles over the last eleven months, I can see why some would never want to venture back through the archives. This article recommended that I publish a post by answering the following questions to update current readers on what I feel are my favorite posts.

  • What was my first post? "Okay, I admit it" was my first venture ever into the world of blogging. The article was an overture to the world (a few readers anyway) that I have Kennedy's Disease. I also provided a little history of my early years of learning to live with Kennedy's Disease. My next article was "Now I am my brother." It was an explanation of how I was becoming more like my brother as the disease progressed.
  • What post did I enjoy writing the most? This was difficult for me to answer, because I have many favorites. I would have to say that my personal stories of overcoming embarrassment were the most fun to write. "Inadequate" is probably my favorite. I can still see myself believing that I would show my wife that I could still get things done around the house. Probably my second favorite article is "Caught" because everyone around me on that plane was listening in on that conversation.
  • What post's title do I like the most?
    This was easy. "Help my wife is a vegan" was fun to write and even more enjoyable to experience. It is about my journey to the "dark side" (eating red meat again). I smile whenever I see the title.
  • What is my most helpful post? This is another difficult question because there are several that I believe were helpful. This question needed amplification in my opinion because it does not clarify "helpful to whom." Many of the research updates and researcher interviews provide us with hope. Several posts provide helpful information on buying a wheelchair, van or other mobility device. The two posts that I have received a lot of positive feedback on were applying for Social Security-Disability (Part I and Part II). However, the post that was most helpful for me to write was "The Natural History of Kennedy's Disease." Researching this article answered many questions that I had about the disease as well as further clarifying or supporting beliefs that I had. Similarly, "The Clinical Features of Kennedy's Disease" was also helpful for many of the same reasons.
  • What post do you wish more people had read? I would have to say that it is "A New Exercise Program has really Helped" (Part I and Part II). A regular "smart" exercise program has proven to me, and to a several others, that it can make a difference in your strength, health and quality of life. Another post that I feel could make a difference is "Document Everything" (Part I and Part II). The process of documenting everything (including your medical history) could help people living with Kennedy's Disease to prepare for the future. Without adequate documentation, Social Security – Disability, short/long-term disability, and health insurance claims are much more difficult to apply for and prove.
  • What post on someone else's blog do I wish I had written?
    Wow, these questions require a lot of thought. I read dozens of blogger posts daily so it is difficult for me to focus in on just one. I have always said, "Nothing comes into existence uninvited." This applies to blog posts also. It seems that when I really need inspiration or help, I come across the right article. There is one blogger, however, that I usually enjoy reading. She is Mary Jaksch and her blog is "Goodlife Zen." Check her blog out when you have the time.
Now, it is my turn to ask my loyal readers three questions.

  1. What was your favorite post(s)?
  2. What was the most helpful post(s)?
  3. What subjects would you like to see more articles written about?
Your comments will help me come up with new articles. In addition, I cannot say THANK YOU enough for reading my posts as well as commenting. I never dreamed I would average 1,300-to-1,600 'page reads' a month. Your support really inspires me!

Thursday, July 15, 2010

Take the Time to Enjoy Life

As you know, many of my articles are amplifications of my responses to questions from those living with Kennedy's Disease. Yesterday I received an email update from a spouse. In an earlier email I commented they needed to "live life to the fullest." I felt they should not worry about what might happen in regards to the disease in five or ten years.  Yes, the disease will progress.  However, no premature worrying about what might happen will help.  It will only do harm (mentally, emotionally, and physically) as well as strain relationships.  I am not aware of any two people with the DNA defect that had the exact same symptoms or the same progression.  In my forties I was still climbing mountains and hiking a couple of weekends a month.  I know of others that worked (including manual labor jobs) into their sixties.  There are men that were snow skiing or hunting into their mid-sixties.  I also know of men in their late 70's that are still active. My last bit of advice was that while living life to the fullest they should not stick their heads in the sand regarding the future.  They can still plan ahead for potential changes in their lifestyle while living a more fulfilling life each day.

In her update she mentioned, "The advice about livng life to the fullest is awesome!  I do try to do that I think.  One thing that I wish we did well was take time for us as a couple.  It's hard to ask people to take our kids, and babysitters are expensive.  Also, we don't go on many vacations, mainly because of the cost, but I want us to make those special memories while the kids are young."

Yes, living life to the fullest is an interesting subject.  In my opinion, the key is to take the time to enjoy life. Often, these are just moments where the focus moves from work, chores, repairs, etc. to the ones you love. Refocusing, even for a few minutes, changes your perspective as well as the perspective of the person you are now living that moment with.

As you have heard me say many times, I have a wonderful wife a.k.a. caregiver, lover and best friend. She has a way of making moments together special. For example, while I was still working, my wife would meet me for lunch almost every day (except when I was traveling or had meetings) and we would picnic at Valley Forge National Park. It did not matter whether the weather was nice weather or not. The object of this hour together every day was to share and show you care. Once we picked out a spot where we could be alone (together), we could just enjoy each other and our surroundings.  Our picnics together never got old.

Before we moved to Philadelphia, we ate lunch together most every day in Seattle, York and Lakeland. I was still pretty agile in my 30s and our picnic lunches would always end with a walk around one of the lakes in town. The cost of being alone together for an hour is only the gas used to meet somewhere.

Something else we used to do regularly was to "get lost" on a couple of weekend days a month.  Most of these trips were unplanned. We would just hop in the car and explore the countryside around us.  The nice thing about these trips is that you can bring the children along also.  It does not have to be a long elaborate trip.  It could be a visit to a city or state park, museum, lake, bird sanctuary, zoo, or possibly an evening sail.  The idea behind these trips, even if it is just for a few hours, is that you are doing something together (the two of you or the family). For those few hours you are focused on each other and not locked into your "home world and routines."  We called it "getting lost" because most times we never really knew where we were heading until we started driving down the road. If a place looked interesting, we would stop and check it out. We discovered some interesting places and became a little closer because of these moments.  My point is that you just need to be a little imaginative and make it fun.

Unfortunately, since my hiking days are behind me and any walks I take are in the wheelchair, our impromptu moments together have declined. We find ourselves planning trips and having many more considerations before just heading down the road. We need to discover new ways to help us recapture those special moments once again.

How do you live life to the fullest? Is there anything special you do to enjoy life together?

Tuesday, July 13, 2010

Empathy – How do we reach a wider audience?

The Peaceful Planet blog has had a couple of nice articles on empathy. Here is an excerpt from one of the articles. "The English word empathy literally means in passion or in suffering with someone else. It derives from the Greek pathos—suffering, emotion, feeling—and can mean that we feel the same emotions as someone else while they feel them, as if by some spiritual osmosis or tele-empathic ability. Most commonly, though, empathy refers to an ability to comprehend the emotions and motivations of another either because we have felt similar emotions or because we can imagine them.

Empathy isn't a warm and fuzzy sort of thing. Having empathetic understanding doesn't mean we need to sympathize or agree with someone, and it doesn't mean we need to take on or approve of another's feelings just because we can sense or understand them. Empathy only means that we're able to feel and see things from another's vantage point—grief, sadness, joy, happiness, motivations, needs—even if we don't share the same viewpoint and emotions. Empathy, then, is knowing that others are like us, no matter who they are or where they live or what they do. Understanding another by imagining what it's like to be in his or her shoes and what the world looks like—from his vantage point—means taking off our own rose-colored sunglasses and putting on those of another: that's empathy."

As a member of the KDA board of directors, I realize the importance of research and education if we eventually expect to have a treatment or cure for Kennedy's Disease. Unfortunately, both research and education cost money; and that comes from donations.


I often struggle with why more people are not empathetic to the impact of Kennedy's Disease on a person and his/her family.

  • Is it because Kennedy's Disease is a rare disorder and most people have not heard of it.
  • Is it because it does not really show itself until the 30's - 40's-or- 50's?
  • Is it because it is a slowly progressive disorder instead of something immediate and devastating?
  • Is it because it attacks mainly men?
  • Is it because it is not considered life threatening?
  • Is it because the Kennedy's Disease Association (KDA) is just a small, relatively unheard of, all-volunteer non-profit organization with minimal overhead and not advertising budget?
  • Is it because the board members and committee volunteers have no viable experience in fundraising like most of the larger non-profits?
  • Is it because we cannot find a celebrity or well-known sports person who will endorse and support (become a spokesperson for) the KDA?
  • Or, is it because those of us living with the disease have done a poor job of educating the world about the disease and its impact on our families?
Most likely, it is a combination of all the above points.

The majority of the financial support that the Kennedy's Disease Association receives today comes from the families and close friends of those with living with Kennedy's Disease. That is understandable, but also troublesome, because our message only reaches a small portion of the public.

Finding a treatment or cure for Kennedy's Disease takes time and costs money. When dealing with a genetic issue (one involving a mutation in the DNA), there is no simple treatment. And, it becomes even more difficult to find a cure. My concern remains that without the capability to entice more donations or corporate sponsorship, few researchers can afford to focus on this disease. Meanwhile, pharmaceutical companies remain focused on the 'big-ticket' drugs because that is where the money is. It is difficult for a large corporation to justify the research and clinical trial expense for a disease that only affects 1-in-40,000 people.

Unfortunately, until we find a way to reach a larger audience for financial support, we will continue to do what we have always done ... just get by.

I would appreciate your thoughts on what else could be done to get the message out there and to increase our base of supporters.

Saturday, July 10, 2010

Making a Difference

As I mentioned in my "Yes You Can" article, I am reading an interesting book. It is "Heroes for My Son" by Brad Meltzer (Copyright 2010 by Forty-four Steps, Inc. - All Rights Reserved. Sharing is permitted). I receive a chapter every day from DailyLit. I am about two-thirds the way through the book. There have been so many inspirational stories that just tug at your heart and every one of them delivers a great message. I am just amazed at some of the stories. Even more interesting is the background story for each selected hero. I might know the name and the accomplishment, but most of the time I am not aware of what prompted the unselfish or great accomplishment.

How often do you find yourself saying something like, "I wish I could do something about that?" We see animals covered in oil in the Gulf or children starving in Haiti. You know the drill. The sight just makes you want to do something to help. Then you ask yourself, but what? I know I have been there many times and, unfortunately, after a few days I forget about it, or at best, give a donation.

What made the author, Brad Meltzer, choose these particular people as heroes, however, is that they all did something about it (not just wish or write a check). They made a difference.

Today's Hero was Dan West. Have you ever heard about him before? Not me, but after reading his abbreviated short story, I wanted to know more. Mr. West is the founder of Heifer International. Yes, I remember the name, but nothing more.

The story starts with a brief summary, "After seeing the devastation brought about by the Spanish Civil War in the late 1930s, Indiana farmer Dan West began sending livestock across the world to the poor and malnourished. His project continued, growing from his small idea to become Heifer International.]

As a relief worker in the Spanish Civil War, Dan had to choose who would go hungry each day because there was not enough powdered milk to feed everyone. "Every day he saw the same starving children." Dan West looked at these starving children and compared them to his daughters back home. They were well fed and healthy because their Indiana farm was fairly self-sufficient.

The adage, "Give a man a fish and you have fed him for today, but teach the man to fish and you have fed him for a lifetime," applies well to this story. That is what Dan did; he gave the people cows, not just a cup of milk. "He started by sending seventeen cows to malnourished children in Puerto Rico. After World War II, more cows were sent to Europe and Japan ..."

As you know, everything has a catch and so did Dan's program. He did not just give the cows away. He made every family that received his cows promise that "when each animal gave birth, the newborn animal had to go to another family." He felt in this way the gift would keep on giving and help many more people that needed food.

Dan West saw there was a need and did something about it. It all started with seventeen cows, but "today Heifer International has fed over 9.2 million people in 128 countries."

At the end of every chapter, there is always one quote from the hero being profiled. "In all my travels around the world, the important decisions were made where people sat in a circle, facing each other as equals," Dan West.

What a great story!

Note: Unfortunately, in recent years there have been several scams going around using Heifer International's name. It just goes to show that for every good deed, there is usually someone else standing just around the corner trying to take advantage of our generosity.

Thursday, July 8, 2010

The 2008 ADA Amendment still appears to be stalled

This month's MDA Quest Magazine has several interesting articles. Two interesting articles in my opinion are the "ADA Roundup" and "Call for Help." I would encourage you to read these articles if you have the opportunity.

Reference the "ADA Roundup": The article begins by mentioning that the original act is twenty years old, but still is a "work in progress." The 2008 amendment to the ADA act appears to be in limbo with the exact language still being discussed. The EEOC has posted Q&A on the proposed amendment. It is interesting reading if you are into "government speak."

"The ADAAA states that its purpose is "to reinstate a broad scope of protection" by expanding the definition of the term "disability." Congress found that persons with many types of impairments – including epilepsy, diabetes, multiple sclerosis, intellectual disabilities (formerly called mental retardation), major depression, and bipolar disorder – had been unable to bring ADA claims because they were found not to meet the ADA's definition of "disability."

"The ADAAA defines a disability as:
  1. a physical or mental impairment that substantially limits a major life activity; or
  2. a record of a physical or mental impairment that substantially limited a major life activity; or
  3. when an entity (e.g., an employer) takes an action prohibited by the ADA based on an actual or perceived impairment."
You can read more about each of these in the EEOC Q&A mentioned above.

The amendment is very positive for employees with disabilities especially in the area of possible employment discrimination. The focus will be on whether an employee is discriminated against and not if the person is disabled. "Up until Jan. 1, (2009) the courts (including the U.S. Supreme Court) interpreted the term "disability" so narrowly that many people, including those with significant disabilities, were denied ADA employment protections. One of the most important effects of the Amendments Act is that the focus now will be on whether job discrimination against a person occurred — not on the question of whether that person is disabled."

Since the amendment was passed, there has been one delay after another largely because the EEOC commissioners could not form a quorum (agreement on the language). The article went on to say that once the EEOC gains agreement on the wording changes, it must be sent to the Office of Management and Budgets (OMB) for review. Then it must be run past other government agencies and after everyone approves, published in the Federal Register. Then, the EEOC will take comments for sixty days. Afterwards, they EEOC will revise the amendment and then send the revised document to the OMB. Then the amendment changes have to be coordinated with other government agencies before finally being enacted. EEOC Program Analyst Okwesa confirmed via email to Quest that "it is uncertain that a final ADA rule will be out by September (2010).

More information on the ADA amendment can also be found in this 2009 Quest Magazine. I would encourage you to become familiar with the act and the amendment. It could be important to you some day.

By the way, for 2009, Indianapolis, IN was recognized as the national model of a disability-friendly city.

Tuesday, July 6, 2010

I am tempted, but still procrastinating

Because I spend several hours a week in front of the PC and my fingers do not always type what I meant for them to type, I have been looking at speech recognition software. This finger control problem happens most often during the winter months, but it can happen at any time. I am not a hunt-n-peck typist. Yes, I do occasionally sneak a peek, but most of the time I just type away without thinking about it. One habit I have never broken, unfortunately, is that I correct on the fly. In other words, I stop and correct mistakes that I see while typing. Occasionally, this habit causes me to lose my train of thought. Bummer!

I tried speech recognition software a few years ago. I went the "cheap route," however, and it did not work. I kept on hearing about a software program that was quite good, but did not want to come up with the bucks to try it (just in case it did not work). I uninstalled the "cheap" program and forgot about it. I heard that Vista had a decent speech recognition program and that Windows 7 software is far superior. I am not ready upgrade to Windows 7 yet because XP Pro still works fine for me.

Late last fall, I read this blog post about speech recognition software and watched the video. I was once again interested. I have gone back to the blogs a couple of times to read the comments posted. Some of these were quite interesting and helpful. I am still concerned about my pronunciations and nasally voice (I never thought I had one until I listened to myself on a recorder). Will the software recognize my speech peculiarities enough to make it worthwhile (not have to spend hours editing)? I understand that "training the software" is important to make it more accurate. If I could get to 95%+ accuracy, it would be better than typing and could be a whole lot faster.

One of the points made in the video is that you need a high-quality headset and sound pod to achieve the greatest accuracy. When I add the price of these two items to the software's price, I once again hesitated (is that procrastination or just being cheap). If it would work, it would be worth it. I am just concerned that I would not like the results and would not use it.

Have any of you had any experience with speech recognition software? I would be interested in your thoughts.



Saturday, July 3, 2010

Proud to be an American

As we prepare to celebrate July 4th (Independence Day), I felt it was important to say something about those who serve, or have served, in our armed forces. I keep them in my prayers and hope the wars will be over soon so they can return home.

I love the song "God Bless the USA" by Lee Greenwood. Every time I hear it, I am reminded of how fortunate I am to live in this country. The chorus is something I find myself singing quite often.

"And I'm proud to be an American
Where at least I know I'm free
And I won't forget the men who died
Who gave that right to me
And I gladly stand up next to you
And defend her still today
'Cause there ain't no doubt I love this land
God Bless the USA"

In my family four brothers, two brothers in law, and I served in the military. Three brothers and a brother in law served during the Korean War including one who was at the front lines. Another brother served in Germany during the Berlin Airlift. A brother-in-law and I served "in-country" Vietnam. He was a foot soldier and I was a part of the "Brown-Water Navy" (the riverboats). My son also served thirteen years in the Army and five more years in the Guards with time in Kuwait just prior to Desert Storm I. My son-in-law served in the Army and was in Irag.  My daughter also served in the Army including a tour in Germany.

When I was leaving for Vietnam, I still remember what my brother (who had been in Korea during the conflict) told me at the airport. "I couldn't be more proud of you right now. If you lose your life over there, I know that you died in the service of our country." At the time, I was not certain I wanted to hear those sentiments. Today, I understood what he meant.

When I came home from Vietnam that same brother took me to the VFW. When we walked in, we walked around the club visiting several tables. He always introduced me as his brother who just returned from Vietnam. I could not buy a drink or my meal that evening. It was what I needed, however, after going through the airports in San Francisco and Minneapolis. We were so thankful to be finally home. Unfortunately, we were greeted with boos and called some interesting names from people who did not believe in the war. It was a difficult walk down the corridors that day ... one that I will never forget. Thirty-seven years later I wrote about some of my experiences in a short story called "Will I Finally Find Some Peace." The following is a paragraph from the story.

"Twenty years after my tour, I visited the Vietnam Veterans Memorial. While standing in front of the black granite wall, I was overcome by the pain that the 58,249 names represented. All of my suppressed emotions and thoughts flooded over me. I could not hold back the tears as I traced my fingers over the name of Jan Christianson – my best friend in high school and a helicopter pilot in 'Nam'. I walked the length of the wall and the darkness and death that it represented tried to consume me. For a moment, I felt like I was being absorbed into its black void. Feelings of futility surfaced once again and with it emerged all the frustration, anger, and disgust that I had kept hidden for so many years."

Even if you disagree with the war in Iraq and Afghanistan, our troops are not to blame. If they had a choice, I am certain none of them would be there. These men and women should be honored for doing their duty (serving their country). They sacrifice so much including spending months and years away from family and friends and many put themselves "in harm's way" every day. Thousands in the Guards have given up good jobs to serve not knowing whether they will have a job when they return or if their family will survive financially during their absence. Too many return home missing an arm, a leg, or things much worse. And, thousands more have given the ultimate sacrifice.

I can no longer serve, but I can at least honor and support those that do. "I love this land ... God bless the USA."

Thursday, July 1, 2010

An AFO that might be of interest

Murray, a past member of the KDA's board of directors, and someone living with Kennedy's Disease was concerned with his loss of mobility. He recently learned through a friend of an orthopedic device that could possibly help him walk safely again. The orthosis device is one of the newer designs of leg braces.

I followed up today to see how the leg braces were working. This was Murray's response.

"Bruce, these are great!  I have the Allard ToeOFF® but you need to see a Podiatrists specialist so you get the correct brace for your gait. I have mine in my sneakers under my inserts and I leave them there. Makes for putting them on a little more difficult but not too bad.

The other day while putting my chair in my car I actually could relax my butt & thigh by leaning against these. I can now walk from the back to the driver's door without hanging on to the car for dear life. I still use my chair in the house only because I wear slippers and spend most of my time in my recliner.

I would recommend these to all KD'ers. I could only stand for ~10 seconds unassisted and now I can walk 30 feet without grabbing on to something."

Murray mentioned that when he first tried the AFOs, he walked down between two parallel bars using them for support. By the third time around, he was walking without holding on to the bars. He could not believe it. It has been three-or-four years since he could do that. Murray also commented that he has a SUV with running boards. The last few years he had to place his butt on the seat and slide in because he needed both legs on the ground to keep the knees from buckling. Since he started using the ToeOff device, he can now lift the right leg up and step into the vehicle without worrying that his left knee will buckle.

In reading the owner's manual, the device seems fairly simple to put on and remove. The manual begins by stating: "Your Orthotist has selected the ToeOff Family Product, the original and highest quality carbon deposit AFO available to meet your specific needs. Carbon deposits offer durability as well as decreased weight and bulk as compared to traditional braces. ... Like a new pair of shoes, orthesis have a break-in period."

At one time I tried an AFO and did not like it at all. It was not comfortable and difficult to put on and take off. This device looks substantially less intrusive, lighter and easier to handle. Technology has come a long ways it appears. If interested in learning more, you should contact a Podiatrist in your area that is familiar with neurological conditions. If you would like additional information on the device, Murray said you can email him and he would be happy to answer any of your questions or refer you to someone that can.

Does anyone else have any experience (positive or negative) with AFOs? If so, please share them and include the type of device used and any specific issues. I look forward to hearing your stories.