Friday, October 30, 2009

Necessity … The Mother of Inventions

As the disease progresses, I have found that I need to adjust how I live. I have come up with ways to make my life easier. Several others with Kennedy's Disease have also shared their thoughts. Below is a list of some of these ideas. The list is not meant to be all-inclusive, but rather just a starting point.

  • Chairs: Chair height becomes a problem. It becomes much more difficult and eventually almost impossible to stand up from a normal chair. Initially, you can build up the chair height by adding a platform under the chair. A couple of 2x4s and ¾-inch plywood make it much easier to stand up. Another way is to buy dense foam seat cushions (one or two). These will often add 2-4 inches of height to any chair and often that is all that is needed. These are two inexpensive ways to make rising from a favorite chair easier. Later on, you might have to move to an 'uplift seat'. This device lifts you up and pushes you forward to help you stand up. Eventually, you might need to purchase a power recliner chair. This chair uses an electric motor to raise you up and move you forward to an almost standing position.
  • Sofas: You could experiment using bed risers (leg extensions) under the legs of the sofa to increase the height. You need to check this out to make certain it is safe (supportive), however. You can also build a platform similar to the chair platform mentioned above. Some people have added a front toe-kick to make it look nicer.
  • Beds: Bed risers are perfect for increasing the height of a bed. Ever since I added risers to our bed, I have never strained to get up. Some people have used bed elevators to increase the head of the bed for easier sleeping. I found that using a foam wedge (6" high) is quite comfortable and helps me breathe easier.
  • Toilets: I recommend buying a taller toilet that is designed for handicap use. It will raise the seat height about two inches. There are also several devices to increase the height of the seat. Some of these are inexpensive while others are very expensive. One device that I use that is inexpensive and yet very helpful is called a 'Tallete'. It is a molded plastic seat that sits on top of the toilet. They make them in various shapes to fit different toilet shapes. A 'Tallete' adds about 4" of height. I actually have two of them. I keep one in the van in case a handicap stall is not available. There are also devices on the market that have mechanical or motorized seats that lift you up. These type devices are more expensive, however.
  • Portable Ramps: There are several types of ramps that will allow you access to homes that have stairs. These ramps vary in height from five to ten feet. Some fold and others roll up. The major problem with most ramps is that they are heavy and awkward to handle. I also have a small aluminum ramp (3'x3') that allows me to go out of the house onto our rear deck and front porch while in my wheelchair.
  • Opening Jars: This becomes more of a problem as your hand strength weakens. One person recommended using Craftsman strap wrenches. They come in a couple of sizes for different size jars and bottles. I use a tool that is specifically designed for opening jars and bottles. It is called the "Oxo Goof Grip Jar Opener." This device has a handle on one end and a 'V' shaped head with a serrated edge on one side that allows you to open almost any size jar.
  • Grabber: One tool that is nice to have around the house and garage is a 'reach and grab' device. Most allow you to adjust the length. They have a handle on one end and a grabber on the other. If something drops to the floor or rolls under something, these devices are very handy.
  • Pant Leg Cuff Clips – When I am outside in the winter, I cannot keep my legs warm. The wind blows up my pant legs … brrrrr! I found that pant leg cuff clips for bicyclist are an inexpensive, yet practical way to help eliminate that problem. These stainless steel circular clips cost $3-5, but provide good protection when you have to be out in the cold on a windy day.
As always, I would appreciate hearing from you on what makes your life easier (either in the comment section below or you can email me).

Wednesday, October 28, 2009

The Things I Miss the Most

Somebody once said, "You never know how good you had it until it is gone." 

I believe I now understand what that statement means. The older I get, the more I find myself missing things. I am not talking about "tangible things," I am talking about special moments or events in my daily life that always brought a sense a happiness, peace, comfort, or joy. In today's post, I want to capture a few of those moments. Some I have mentioned before in other posts, but I still feel it is necessary to list them because of their importance to me.

I really miss

walking hand-in-hand with my wife. It was always intimate one-on-one time for us.

sitting next to my wife, while holding hands, on a couch, in a movie theater, or in a booth. Even after being married for several years, people would comment that we looked like newlyweds because we always sat next to each other and held hands.

a good hug. Hugs today require me to remain focused on standing and not on supporting the person I am hugging. Or, if I am in the wheelchair, it means the other person has to lean over and somehow find a way to perform the hug.

picking up a child. There is something special about holding a child in your arms. Today, the child has to be placed in my lap when I am sitting down. I also miss lifting them above my head or spinning them around in circles while both of us laugh.

hiking. My wife and I loved to hike. Until my late forties, we spent probably two weekends a month hiking. Whether it was hiking on the slopes of Mount Rainier, the Giant Redwood Forest, Kings Canyon, on a remote beach in Hawaii, or a nature trail on Assateague Island, we found great joy and peace in these natural surroundings. I always said it was our way of communing with nature. Hiking was as much a part of our lives as anything.

playing racquetball and tennis. These were great stress relievers, a good workout, and excellent social opportunities for both of us.

sailing. There was something special about sunset sails on the Puget Sound or weekend sails through the San Juan Islands. I cannot really explain what the feeling of wind power does for me, but if you sail then you know what I mean.

helping family, neighbors and friends with their weekend projects. The camaraderie is electrifying and you feel so good afterwards.

acting spontaneously (without thinking things through). For example, being able to just jump in the car and go somewhere for the weekend (getting lost as we called it). There was something special (adventurous) about just taking off without regard as to where we would end up and not worrying about whether the next restroom is handicap accessible.

As I mentioned, there is nothing tangible in the list above. They are just moments in time that made up the life that we so thoroughly enjoyed. Yes, we have learned to accept their loss, but that does not mean we were ready to give them up. Fortunately, we have many wonderful stories, photos, and memories of our adventures together.

I would be curious as to what you find yourself missing. Have you been able to substitute something that helps minimize that sense of loss? Please provide your thoughts in the comment section below. As always, I look forward to hearing from you.

I will leave you with my thought for the day. "Appreciate what you have and take nothing for granted ... because you never really know how good you had it until it is gone."

Monday, October 26, 2009

You learn a lot over thirty years

Thirty years ago, when I was somewhat of a 'jock' and an up-and-coming executive, I thought I had the world in my hands and nothing could stop me. I made things happen. There was no lack of confidence and I felt I could accomplish almost anything. It was a wonderful life and all I could see down the road was an even better one.

Thirty years later, I am a more humble person. I have learned much over the years and continue to learn more about myself and about people, in general, every day. Where I was once a 'mover and a shaker', I am now blessed and thankful for the life that I have. Almost every day I rediscover the beauty of life through the help and support of many people … often strangers that I might never meet again.

Yes, my lovely wife is one of those people. When we first met and as our love grew, she never knew she would someday be living with a man with Kennedy's Disease. She has learned to live with me (living with the disease) and that is no easy matter. She has had to live with me through many tough times as Kennedy's Disease whittled away at my body, pride, ego, and spirit. She has become an excellent caregiver even when I fought against the notion that I needed one. For some reason she puts up with all my crap and supports me as I continue to learn to live with the disease.

What can I say about family and friends that is not mentioned in the above thoughts about my wife? They are flexible in their plans and continually find ways to involve me in activities that I would just not do if it were not for them. They are always there for me if I need them.

And, whether they are my grandchildren or just children in general, they are blessings from God who see the man (or grandpa) and not the handicap. They do not judge me on what I can or cannot do physically, they just want to laugh, play, learn, and be respected and loved. Children provide me with great joy because life is simple (uncomplicated) to them. They are the truest blessing in life because they expect nothing and give so much. With just a smile, they can warm my heart and make me feel young again.

Now, speaking of those strangers that I will never meet again, they are also little blessings in life. Several times through the years, someone stopped to pick me up when I fell down. It was not a problem for them, but it made all the difference in the world to me. Whether at a gas station in the middle of western Virginia at midnight, in an airport jet-way in Philadelphia during the rush hour, or outside a restaurant in Seattle at lunch; when I go down it is very difficult to get up without some help. Fortunately, these people came to my aid, brushed me off, made sure I was okay, and then walked on never to be seen again. 

Over thirty years I have learned a lot about life. Probably one of the most important lessons is that people are generally good and want to help. In addition, children do not know or care about the word 'handicapped'. And, most important, the love of family and friends knows no bounds if you are receptive and thankful for their support.

What more could anyone want in life?

Saturday, October 24, 2009

Safety is Job 1

Back in the 80's and 90's, Ford Motor Company had a slogan that emphasized their focus on quality. Almost every ad ended with, "Quality is Job 1." They wanted their workers as well as the public to know that quality comes before anything else.

After I had experienced a series of falls over a few years (a couple of them serious), my wife decided to launch her own ad campaign. She strung banners throughout the house and garage with the slogan, "Safety is Job 1." She wanted to remind in a not so subtle way that …

  • When I am hurt, I am not the only one that suffers.

It only took me a few more falls and a couple of more broken bones for the slogan to finally sink in. Look, I never said I was a fast learner.

I can now say that if I error, I error on the side of caution. Yes, I have probably given up a little more freedom than I would have liked, but the rewards are well worthwhile.

Over the last sixteen months, my wife's parents have experienced several serious health issues. My wife needed to know that I would be safe and could take care of myself if she had to be away from home. The last thing she needed was for me to fall while she was away. Having to care for me and her parents who are an hour and a half away would just be too much.

So, by listening to her needs and 'living' the slogan, my wife has a little peace of mind when she travels. I have also enjoyed the longest period of my "post-onset" life without a fall. It has been over forty months … NICE!

Thursday, October 22, 2009

Is my discipline really an obsession?

The dictionary defines "discipline" as: the act of denying yourself; controlling your impulses.

And, "obsession" is defined as: a compulsive preoccupation with something.

There is a saying, "Use it or lose it!" It has been over eleven months since I started my new exercise program. Because of my discipline (obsession?), I have exercised every day but one (Christmas). The reason I continue to exercise every day is because the exercise program works. I am now using weights for all of the arm and shoulder exercises (and increased weights for a couple exercises). Leg exercises have become so easy that I increased the number of reps and the actual hold time to a point where I become a little bored counting. This is all good news and probably explains my obsession (I mean discipline) with exercise.

I can also say that my legs are stronger today than one year ago. If the documentation is correct about those of us with Kennedy's Disease, then, on average, we lose about two percent (2%) of our strength each year. If that is the case, I reversed the downward trend at least for this year. If that 2% a year number were correct, that would mean that my strength should have declined by about 70% (it has been 35 years since onset). There are times that I feel that way, but as a whole, I do not take much credence in averages. I guess the only sure way to know would be to have been tested every year using the same exercise program. On the other hand, what does it matter? No two people with the defect decline at the same rate. Perhaps it is important for the scientific community or for doctors to help explain the degradation. If I would have thought 35 years ago that I would be in this condition today, I would have been more worried.

As I mentioned in my two articles on exercising, I just enjoy exercising. It is something that I have done most of my life. It makes me feel good (endorphins) as well as breathe better. And, I can see results. So, whether it is a quality (discipline) or a compulsion (obsession), what does it really matter as long as it feels good and does no harm?

Next, you will be questioning why I go through a pack of handy-wipes every day (just kidding).

Tuesday, October 20, 2009

Who Am I?

As the inability to perform basic and often simple tasks increase, frustration and anger often become side effects of my fight to remain independent, mobile, and helpful. Resignation (a negative form of acceptance), especially at first, is something I cannot tolerate. Meanwhile, since there is no treatment available, the wasting away of my body continues. As the disease progresses, my self-esteem is challenged almost every day in some way or another.

As my muscles weaken further, self-doubt increases. I begin to wonder if I am more of a burden then a blessing to my wife. My perceived manhood is now being challenged. Instead of being the protector of the family, my wife is now trying to protect me. A few years ago, another challenge showed up and this one is even more difficult to handle. It is not bad enough that the disease has robbed me of my strength; it is now slowly taking away those special moments of intimacy that I once shared with my wife. It is impossible to walk hand-in-hand on the beach, just sit on the couch together, or snuggle comfortably in bed. It is difficult to give a good hug or hold and comfort my wife from a wheelchair. Yes, you learn to improvise, but it just is not the same for either of us. Improvising removes spontaneity.

Self-doubt begins to raise its ugly head as more and more things that are important to me slowly disappear from my life. Every emotion and belief is being challenged. I find myself asking, "Can I bear my soul and my pain and still be considered a man?" As I feel more isolated from the world around me, I begin to ask myself what my wife really thinks of our relationship. I know she still loves me, but can she continue to love me as I become more of a responsibility (burden) to her. Or, will she just end up taking care of me out of some sense of responsibility … you know, the "in sickness and in health" portion of the vows? At times, I become frustrated because I am no longer needed. If I am not the breadwinner, the lover, the "fix-it man," and the "man of the house," then who am I?

The unknown (my future) is what concerns me. Being alive, but not having any "quality of life" and being a constant burden to my wife is difficult for me to accept.

Now, do not be concerned that today's post is some sort of sign of depression. I am not 'down' or upset. Actually, the opposite is true. My writing of this post is just a way to express another "wake-up call" for me. I am trying to find myself once again (my new calling, so to speak). This blog has been part of that discovery process. My involvement with the Kennedy's Disease Association is another part of the process. Yet, there is still something missing … my more personal (intimate) side still has to be found.

Acceptance, something I have written about several times, is not a light switch that can just be turned on. It is not something that automatically means you are happy again or brings you comfort. There are many parts of my life that I have not fully accepted yet. This process of rediscovery is a never-ending journey for me. Every time I accept something new about my condition and myself, it is like another awakening. And, whenever I find a new way to express myself (to help others), opens another door.

About a year ago, I was watching "Saturday Night Lights." The high school football team was down 26 to nothing at the end of the first half. The coach ended his halftime pep talk to his players with the following. "Every man at some point in his life is going to lose a battle. He is going to fight and he is going to lose. What makes him a man is that in the midst of the battle he does not lose himself." For me, this battle is not over, because I am still finding ways to be my new 'Self'.

Dr. Phil says it another way, "What happens in your life will affect you, but it does not have to define you." I am hoping that this discovery process will better help define me.

In the meantime, I need to focus on the moment (live for today), forget about the past, and not be too concerned about the future. The only thing I have any control over is the present (my attitude). Another favorite saying of mine is, "Nothing comes into existence uninvited." If I worry about what could be, it will probably come to pass (or maybe even something worse). On the other hand, if I focus on what I can do today to make a difference for others, then the past and the future really does not matter.

"How can I help you?"

Sunday, October 18, 2009

I am not ready for winter!

A cold front came through yesterday. We are unusually cold for this time of year with nights in the mid-to-high thirties and days in the forties (too cold for this time of year). We also have wind gusts of 20-30 mph. I noticed yesterday that my legs did not want to work after taking Fred for his morning walk (I ride the cart and he walks). We are supposed to warm up again early this week (back into the 50's and 70's). I am ready for that.

Last January we had some unusually cold weather for northern Georgia. It was 13 degrees one morning and did not get out of the twenties. I remember commenting that I thought we moved away from this type of weather. Fortunately, those temperatures are not normal around here.

The cold also affects my ability to use my hands and legs. I find myself feeling much weaker and the fingers do not work. Even though temperatures in the house are still comfortable, I just cannot seem to warm up. I find that my fingers just do not want to work correctly (i.e., typing, eating, picking up things). During the winter, I wear long underwear, wool socks, a hooded sweatshirt, and even have heat packs for my gloves (no, I do not live in Alaska). When I go out, I look like "Nanook of the North." The winter gear all seems to help, but it does not eliminate the basic problem. Someone recommended electric (battery operated) gloves and socks. Someone else recommended that I install a heater in the golf cart. I am not certain I am ready for this level of warmth yet, but give me a few more days of low temperatures and high winds and I might take the plunge.

You would not believe that I grew up in Minnesota. 35 degrees below zero did not keep me in. We (my Boy Scout troop) even camped out one weekend where temperatures never rose above 25 below. It was nothing to go hunting in the early morning. Somehow, we survived and had a lot of fun doing it.

When we lived in Seattle, we hiked in the mountains all year round. We even used snowshoes during the winter when the snow was several feet deep. I was in my mid-to-late forties at the time and did not notice the temperatures nearly as much as I do today. Just thinking about snowshoeing in my current condition makes me smile (cannot walk and chew gum).

Yes, I know I will survive these occasional cold days in Georgia. I really believe I just need something to complain about occasionally. The most important thing for me to remember is that "this too will pass."

Friday, October 16, 2009

It Could Always Be Worse

When I was a little younger and struggling with the "why me" notion, I would occasionally get a little down (feeling sorry for myself). It never seemed to fail that whenever I was in one of those moods something always seemed to happen that would remind me how fortunate I am and how much worse off many others are. It might be a phone call, an email message, or a conversation with someone, but it would always be a reminder that, yes, I have Kennedy's Disease, but I am in good health otherwise.

That last time I was feeling sorry for myself was when I broke my tibia and fibula after just recovering from two other breaks. I was feeling terrible that my wife had to go through another convalescence with me (the caregiver always suffers as much as you do). I was also feeling a little down because life would be a more difficult over the next three-to-four months of healing. The doctor warned me that I could not put any weight on my left leg without causing more damage. For a healthy person, this would be difficult enough. For someone with Kennedy's Disease, this becomes incrementally more difficult because the other leg (as well as the arms-shoulders) is not strong enough to help compensate for the loss of the one leg. Additionally, we did not have a vehicle that would allow me to travel (in my wheelchair) during the healing process. What that meant was that I was stuck in my home for several months. Woe is me!

Well, right about the same time that I was feeling a little grumpy (my wife would have a different word for my attitude), our neighbor and good friend was struggling with terminal cancer. This wonderful person was going through chemotherapy and then some aggressive experimental chemotherapy while trying to hang on to her life long enough to see her first granddaughter born. She was experiencing terrible pain with only the slimmest ray of hope that these procedures would help. Yet, as she was going through all this, she would call or stop by to check on me to see if I was doing okay. Talk about a "wake-up call."

Several years ago, I began using a mantra to help me through the highs and lows of living with Kennedy's Disease. Every time I think how bad or how good something is, I remind myself that … this too will pass. These four words help me refocus my thoughts and emotions and get me back on track. Life is never as good or bad as it seems. It is only your "perception of the moment" that decides how good or bad it is. And, in regards to your perception, this too will pass.

Wednesday, October 14, 2009

Developing a Support Network

The other day I posted an article on Loneliness. One of the suggestions for dealing with loneliness was to "call or get together with people you know." Another suggestion was to "challenge yourself to take the initiative in social relationships." And, one of the tips provided was to "surround yourself with positive people." These thoughts caused me to want to write more about building a support network.

Having close friends and family that you can talk with and count on can make all the difference in how you approach and live with Kennedy's Disease. Building these relationships takes time and effort. The rewards, however, make it all worthwhile. In a Mayo Clinic article on Support Networks, it stressed, "A strong social support network can be critical to help you through the stress of tough times, whether you've had a bad day or a year filled with loss or chronic illness. It's never too soon to cultivate these important relationships — and your social support network can never have too many good friends."

A support network is different from a support group in two key areas. A support network is made up of family members and friends; people who know and care about you at a personal level. Support networks are very informal (casual) rather than a structured program scheduled on a particular day and time. You can call a family member or friend anytime just to chat, to schedule a lunch with them, or to meet somewhere. The talks are informal allowing both parties to share their thoughts and concerns. You are there for each other.

The Mayo Clinic article goes on to list three main benefits of cultivating a strong support network.

  1. Sense of belonging: Spending time with family and friends helps ward off loneliness. Knowing you are not alone goes a long way towards coping with your situation.
  2. Increased sense of self-worth: Having people call you a friend reinforces the idea that you are a good person to be around.
  3. Feeling of security: By reaching out and sharing yourself with others, you have the added security of knowing that if you start to show signs of depression or exhibit unhealthy lifestyle habits, your friends can help alert you to the problem.
Developing a strong support network just does not happen. It requires a little bit of work on your part. Relationships are a two-way street. You have to be a good friend to have good friends. Here are several pointers from the May Clinic article on how to develop strong relationships.

  1. Stay in touch: Answer phone calls, return emails, respond to invitations are a few ways to let people know you care.
  2. Be proactive: Do not wait for someone else to make the first move. If you meet someone that you believe could be a friend, invite him or her for coffee or lunch. Strike up conversations with strangers and see how things go.
  3. Know when to say "no" and when to say "yes": Do not decline an invitation because you feel insecure or shy. Only spend time with people that you find supportive.
  4. Do not compete: Be happy instead of jealous when someone succeeds or does something that you would have liked to do, but did not or could not.
  5. Be a good listener: Find out what is important to your friends and family. You might discover you have more in common than you think.
  6. Challenge yourself: Keep looking for ways to improve your social and communications skills. Maybe it is by complaining less, being more generous and forgiving other's faults.
  7. Do not overdo it: Especially in the beginning, be careful not to overwhelm your family and friends with phone calls, emails and invitations. Give them some space. Save those high-demand times for when you really need them.
  8. Appreciate your family and friends: Take the time to say thank you and express how important they are in your life.

The key to any good, positive social network is to remember that it is always a two-way street. If you are there for them when they need it, they will be there for you.

Monday, October 12, 2009

Me and My EZGo

When we retired and moved to northern Georgia, we bought a house on 3½ wooded acres that sits on a ridge overlooking a ten-acre lake. Our driveway is longer than a football field and fairly steep. The road from our property to the lake goes down a steep hill that has a switchback in it. I had an electric scooter at the time. When I went for a ride down to the lake half of the initial trip was downhill. It did not take long before the electric motor's self-braking unit on the scooter burned out. Since there is no manual brake on a scooter, I had quite the ride the day it burned out. You do not need to go to Six Flags for quite some time after that experience.

Because my dog, Fred, needs his exercise and because I love nature, walking him (or riding in my case) is an important part of our day. We usually go out four-to-five times (2-2½ hours … rain or shine) throughout the day and I enjoy the walks as much as he does. I considered buying another scooter, but felt the same thing would happen again (my heart could not handle another ride down the hill). A friend recommended a golf cart. I test-drove several models and after some shopping around, I purchased a used EZGo. I chose an electric cart over a gas-powered one because it requires less maintenance and I do not have to worry about filling up the tank. I just need to plug it in every other day to recharge the batteries.

The cart was an excellent purchase and I have never second-guessed buying one. It has a top, windshield, and vinyl cover that protects me during rainstorms or in the cold of winter. It also has headlights and taillights that I use for the early morning and evening walks during the winter. I joke with our nephew about someday 'tricking the cart out' with a thousand watt stereo, air shocks, off-road tires, and a heater system, but so far, I am happy with what I have.

One of the most important decisions in buying my cart was 'service'. Since I cannot easily take my cart in for maintenance, our local dealership provides road service. The cart needs minor repairs or maintenance once or twice a year. Normally, the service technician is knocking on my door within two-to-four hours of my call.

As you can tell, my golf cart is important to me. It provides me with the freedom to visit neighbors, keep Fred exercised and stimulated, and allows me to commune with nature every day. I also use it to take the garbage container down to the road and to haul rocks, brush, and tree limbs around the property. Without the cart, life would not be quite as much fun.

Friday, October 9, 2009

How to Deal With Loneliness

Kennedy's Disease is often a lonely disease (most of us have gone through the "why me" phase). Having a significant other to share those times is important, but what happens if you do not have a significant other or close friend? I found the article below on the web. I believe it has some good advice for those without significant others or who are just feeling a little lonely because they cannot get out and participate in activities as they used to. I hope it provides some 'food-for-thought' for all of us.

How to Deal With Loneliness
by Margaret Diehl (

People feel lonely for a number of reasons, such as not having enough friends, not knowing how to be close to the people you know, or not being accepted by those you try to befriend. Everyone experiences loneliness at some time in his or her life.

  1. Realize that we all get lonely. It does not mean there is anything wrong with you. We are particularly prone to loneliness when we are making transitions, especially for the better. If you are changing, such as exploring new alternatives and paths for yourself, you are bound to get a little lonely as you look for people who share your new interests and thoughts.
  2. Call or get together with the people you know, even if they are not who you want to be with right now. Human contact makes more contact easier. This includes your mother and the person at the deli counter. Listen more than talk. Listening, and drawing people out will deepen your contacts more than just talking endlessly about yourself.
  3. Get involved in anything where you will meet people. Look for community events/activities in your area. Volunteering can help. Do not attend functions with the idea of making friends or meeting people. Being too demanding is a sign of loneliness. Try to go with no expectations whatsoever, and to enjoy yourself regardless of what happens.
  4. Challenge yourself to take the initiative in social relationships whenever you can. YOU ask the person if they want to chat, get a coffee, whatever. Remember how much you like it when people are attracted to you. Remember though, that you are trying to make a place for yourself in another person's life. Do not think that just showing up will win you instant friends. It can be a long, painstaking process, and most people you meet already have their own friends and lives. You must always show interest in other people before they will show interest in you.
  5. Take risks about revealing yourself. Say what is on your mind, if it seems at all likely the other person will be receptive. It can hurt when it backfires, but it is worth it a million times over if it works.
  6. Remember that we are all alone inside our heads; we are born and die alone; it is nothing special. Every person who has ever lived has been lonely. Love would not exist without loneliness to inspire it. Look at your loneliness with detachment.
  7. Notice the difference between loneliness and solitude. Imagine this is the last day you will ever be alone. What would you do?
  8. Join an online community. Sometimes it can help.
  9. When feeling lonely, do not allow yourself to wallow in your loneliness. Do something, anything! Take a walk, ride your bike.
  10. Do everything you would normally do with a partner or friend. Many times it is not the partner or friend you are missing, but the activities and hobbies you shared. Take yourself out for a date. For example, if you would have gone out to dinner or to a movie on a date, then take yourself out to a movie or to a nice restaurant. Do not hold yourself back.

Some Helpful Tips:

  • Connect with anyone who you assess to be genuine, and who is around you.
  • Set up social activities when you are not feeling lonely. Anticipate when that will be and be proactive.
  • Read literature and go to museums/theater/dance. Art reaches inside.
  • For those with religious beliefs, consider fellowship with those of your faith.
  • Remember that reaching out to someone else lonelier than you could give you more happiness than you could imagine.
  • Learn to meditate so that you have the experience of being loved and nurtured emotionally by other sources than human beings.
  • Consider getting a pet! Animals can make marvelous companions; they give unconditional love, and can offer you loyal company. Walking a dog can also be a great way of meeting other people!
  • Try not to get stuck in a rut with routines; routines allow you to go on autopilot, allowing you to daydream about "what could be." Even worse, you are less likely to act on those daydreams, because you will be comfortable with your routines. Shake things up!
  • Engage yourself in some activity that would keep your mind occupied.
  • Remember that loneliness happens to everyone. Surround yourself with positive people.

I believe the key messages in the above article are everyone gets lonely and you need to be proactive. Do not just sit there and wallow in your emotions. Recognize that taking the first step will be the most difficult, but also could be the most rewarding. If nothing else, join us in twice a month chats sponsored by the Kennedy's Disease Association ( It is a great place to meet people with similar concerns and issues.

Wednesday, October 7, 2009

Know the Difference between a Cold and the H1N1 (Swine) Flu

My brother sent me this information today and I thought it provided a good comparison of Cold and Swine Flu symptoms.

"If in doubt … have it checked out."


- Fever is rare with a cold.
- Fever is usually present with the flu in up to 80% of all flu cases. A temperature of 100°F or higher for 3 to 4 days is associated with
the flu.

- A hacking, productive (mucus- producing) cough is often present with a cold.
- A non-productive (non-mucus producing) cough is usually present with the flu (sometimes referred to as dry cough).

- Slight body aches and pains can be part of a cold.
- Severe aches and pains are common with the flu.

Stuffy Nose
- Stuffy nose is commonly present with a cold and typically resolves spontaneously within a week.
- Stuffy nose is not commonly present with the flu.

- Chills are uncommon with a cold.
- 60% of people who have the flu experience chills.

- Tiredness is fairly mild with a cold.
- Tiredness is moderate to severe with the flu.

- Sneezing is commonly present with a cold.
- Sneezing is not common with the flu.

Sudden Symptoms
- Cold symptoms tend to develop over a few days.
- The flu has a rapid onset within 3-6 hours. The flu hits hard and includes sudden symptoms like high fever, aches and pains.

- A headache is fairly uncommon with a cold.
- A headache is very common with the flu, present in 80% of flu cases.

Sore Throat
- Sore throat is commonly present with a cold.
- Sore throat is not commonly present with the flu.

Chest Discomfort
- Chest discomfort is mild to moderate with a cold.
- Chest discomfort is often severe with the flu.

Source: BayRidgeTalk For a printable version: PDF Version

More information on the Swine Flu: Find the Answers

Tuesday, October 6, 2009


Sometimes I become frustrated because I want to help more, but I am limited in the ways I can provide assistance. An example follows:

A woman from Georgia moved to a foreign country to work and eventually married. A couple of years after their marriage, he was diagnosed with Kennedy's Disease. After five years in this country, they have decided to move back to her home in Georgia. Since she is a U.S. citizen, there is no issue for her. Her husband, however, now in his mid-40's, is not a U.S. citizen and our State Department is refusing to issue him a visa because he has Kennedy's Disease and, in their opinion, will be a drain on our welfare system. Even though the couple has a home, car, and bank account in Georgia, it does not matter. Because they do not have jobs here in the States and health insurance coverage, he is considered a possible welfare case.

She has written many letters to our State Department, provided information from his neurologist, and even hired an attorney, but there always seems to be some catch that the State Department adds to the discussion before they will issue a visa. They have told her that she can come back to the States and after she has a job and health insurance, she can reapply for her husband's visa. As you can imagine, she is not crazy about leaving him behind.

I will not go into the details, because they are not important in this post. I will say that I wrote the State Department on her behalf explaining that people with Kennedy's Disease live long, productive lives and are often as healthy, or healthier, than the average person is. I also said that since there is no treatment or cure, the degree of medical attention required because of his condition is minimal. I went on to mention that since Kennedy's Disease does not affect the cognitive ability of the individual, that there are many jobs perfectly suited for a person with this health condition. In closing, I gave them the Kennedy's Disease Association website address and asked them to contact me if they had additional questions or concerns concerning Kennedy's Disease.

This is a roundabout way of getting to the point of the post. Often, people judge others based upon their looks and physical capabilities. A wheelchair, nasal voice, drooping mouth, or inability to walk normally (I think you get the idea), can create a wrong impression in some people. They do not see the individual; they see the condition and make a snap judgment.

I am hoping the couple mentioned above can resolve this issue with our State Department so they can move to the U.S. I also hope that the person(s) denying the visa learn something positive through their handing of this case. For the few times we are unable to help, there are many other times that we do make a difference in someone's life.

I just wish I could do more.

Sunday, October 4, 2009

Glimmers of Hope - Part V

Profiles of Young Researchers

In an earlier post called, “The Nine Stages,” I mentioned “Hope” was the ninth stage. I ended the post by saying, “With acceptance, and armed with the additional knowledge that researchers were working diligently towards finding a treatment and potentially a cure, I discovered something that had been missing recently in my life – Hope." In another post, “Another Ray of Hope on the Research Front,” I commented, “how fortunate we are that another generation has picked up the baton and continues to move towards the finish line (finding a treatment or cure). As long as someone is carrying the baton, we have hope.”

In this post, I wish to recognize another researcher who is carrying the baton:

Elena Bolzoni, Post Grad Student, is a researcher at the Università degli Studi di Milano in Milano, Italy

Bruce: Why did you decide to focus your research on Kennedy's Disease?

Elena: I heard about Kennedy's Disease for the first time during my master at the Centre of Excellence on Neurodegenerative Diseases. My mentor introduced me to Kennedy’s Disease. Then I started studying it and I became more and more interested in the subject, most of all because it is a rare disease and it is sometimes not well known among the scientists (at least not as much as other neurodegenerative diseases). That is why, when I had the choice, I decided to focus on Kennedy’s Disease.

Bruce: Do you personally know anyone with Kennedy's Disease?

Elena: I met patients at some meetings (including the KDA annual meeting), and one of my best friend's dad has Kennedy’s Disease. Meeting the patients and personally knowing the patients' relatives is useful to really understand (and never forget) what is our final goal out of the laboratory.

Bruce: Briefly summarize what you are currently working on and why you feel it is important in KD research.

Elena: I am characterizing molecules that have beneficial effects on cell models of SBMA (Kennedy’s Disease). I am testing compounds already used in therapy for other degenerative diseases. This would facilitate future clinical trials, if they result promising in experimental models. (Note: Elena has simplified her research comments at my request. Her research grant proposal is way beyond my level of understanding)

Bruce: What are your aspirations (career goals)?

Elena: I must finish my PhD program, and then I would like to continue my career in science.

Friday, October 2, 2009

An Ounce of Prevention …

Flu season is upon us again. As most of us with Kennedy's Disease know, the flu can be detrimental to our health. Our lungs, especially as we get older, are often not strong enough to clear the phlegm.  If we get pneumonia, things can get serious.

I encourage anyone with Kennedy's Disease to have the annual flu shot. And, if you have not had a pneumonia vaccination, or if it has been more than five years since the last vaccination, I highly recommend that you have that shot or the booster, if needed (more on the vaccination). If you are on Social Security or a member of the MDA, the vaccinations are free.

I continue to hear that we do not need to be concerned about the swine flu. I have discussed this with my doctor and the pharmacist. Both feel that my immune system (because I am more mature … old, in other words) has probably built up a resistance to this type of flu. The CDC reports that most deaths from the HiNi (swine) flu result because the person develops a secondary infection (pneumonia). In other words, having the pneumonia vaccination might help those who do come down with the swine flu (more on this).

I also have a couple of other recommendations that I would like to share with you today. Both are lung exercises that will help build up lung capacity and help provide the lung strength to clear phlegm should you ever come down with the flu.

  • The Sniff Exercise: Anytime you think about it, take a deep breath through your nostrils. You should be able to see your stomach expand outward (the diaphragm is expanding). Take three or four good sniffs and exhale slowly after each one. This is a simple exercise that helps build and maintain your lung capacity.  
  • The Cough Exercise: Take a deep breath and then cough. Make sure it is a loud, forceful cough. Cough three or four times. This is another simple exercise that helps build lung strength. 
  • Note: You should practice both of these exercises every day.

One other bit of advice is that I have found Mucinex Expectorant (tablets) to be excellent in helping to clear phlegm from the lungs. A few years ago, I came down with pneumonia. My doctor recommended Mucinex (it is an over-the-counter product) and I found it to be very helpful in cleaning out my lungs. As always, check with your doctor before taking any medications (even if they are over-the-counter).

I would be remiss if I also did not mention to keep your hands washed and do not rub your eyes (this is advice from my mother and now my wife). Unfortunately, I always have difficulty following this advice.

As Benjamin Franklin said, "An ounce of prevention is worth a pound of cure." Annual vaccinations and a few sniffs and coughs will help keep you healthy and your lungs strong.