Acceptance is not the same as “giving up”

• The dictionary defines "giving up" as a verbal act of admitting defeat or the act of forsaking.
  
• "Giving in", on the other hand, is defined as consenting reluctantly or yielding to an outside pressure, wish or opinion. 

For a long time I viewed "giving in" to this disease as being defeated by it. Because I am a very competitive person, I will not "give up" on anything without a fight. Often this perspective on life resulted in me falling. Some of these falls resulted in me breaking a bone or causing some other injury. When I look back over the last ten years, most of my injuries were preventable. If I had accepted the possibility of an injury at the time, I would have acted more responsibly and possibly never have fallen.

Ever since I broke the tibia and fibula, however, I have been far more accepting of the notion that it is better to error on the side of being safe. Yes, I am less mobile today, but, on the other hand, I have not had a fall or injury in over thirty-two months (my name is Bruce and I am a recovering chronic faller).

Acceptance for me has not come easy. Fortunately, my wife (the smarter one in our family) is a motivating factor in this evolving process (her training method - the carrot or the stick). Moving to a "class 3" wheelchair, using a lift-chair, shower stool, and commode seat-lift are four recent examples of me considering safety first. I believe these are all moves in the right direction.

I have not given up. I have just accepted more of my limitations. With this acceptance, I am safer and happier. Acceptance does not help the frustration that I still feel as the disease progresses. It just means smarter decisions are being made that make my life easier and removes some of the stress from my wife.


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Living with Guilt

The dictionary defines "guilt" as "remorse caused by feeling responsible for some offense" or "the state of having committed an offense."

For me, living with Kennedy's Disease often means living with guilt. Two forms of guilt that I live with are described below. One I can do nothing about, but it is still frustrating. The other I have more control of, but it is a constant learning and maturing process for me.

Guilt #1: (I cannot do anything about this one except learn to live with it) As a parent, I never want to do anything that might harm my children mentally, emotionally or physically. Today, and most every day, I live with the guilt that I passed the defective "X" chromosome on to my daughter. In addition, there is a chance that it was also passed to my grandchildren. Hoping for a treatment or cure, whether medical or miracle, is what I live for today. That miracle is not for me, I am looking for anything that might help my daughter and her children.

Guilt #2: (This is something that I have control of and am responsible for) Living with the disease is often just as difficult for caregivers, family, and friends. As I strive to remain independent, I often become frustrated with my loss of certain physical capabilities. Yes, I realize that I need some level of support to continue to live my life. Unfortunately, I often look upon this support as "mothering" or even "smothering." The primary care-giver (my wonderful wife) is occasionally the unintentional beneficiary of my anger and frustrations of having to live with this disease. I do not mean to lash out, but sometimes I just need to vent and she is often just the person who happens to be in the wrong place at the wrong time. I realize there is no excuse for my anger and I know she never signed up for this when she married me, but for some reason she continues to put up with it. The guilt that follows my outbursts or actions leads to even greater frustration because I realize I am hurting the one that I love.

You would think I would learn.


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Another Embarrassing Moment

If you have been reading my blog, you know by now that I often write about embarrassing moments. It seems that I have plenty of them. This event, even though it has nothing to do with Kennedy's Disease, was another one of those "life's most embarrassing moments" for me. It took place about eighteen years ago.

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CAUGHT!

On the last evening of a managers' meeting in Seattle, we had a group dinner. Eight managers from different regions of the country were assigned to each table. During dinner, Rosemary, our new products development manager, started telling us about a great book she had just finished. Paul, our Coated Paper mill manager mentioned he had just finished reading it also. They talked about this book for fifteen minutes during dinner.

While at the airport waiting for my departure, I walked through the gift shop and happened to see the book for sale. Intrigued from the conversation the previous evening and knowing I had a six-hour flight ahead of me, I bought it (something I would normally not do because of the price). About two hours into the flight, an attendant walked by and asked what I was reading. By now, I knew I was reading a romance novel (something I would not normally read). I was more the Ludlum, Clancy, Follett, and Graham Greene kind of guy. I casually turned the book over so she could see the title.

To my surprise, she says rather loudly, "My God, I loved that book!" Several people around me immediately looked over to see what I was reading. She then went on, "I cried and cried while reading it. I must have gone through a box of Kleenexes. My husband kept on asking me what was wrong, but I could not even begin to explain the emotions that this book brought out of me."

By now, I had stuffed the book in the front seat pocket and was hoping this conversation would soon end. Unfortunately, the flight attendant was just getting started and all the passengers around me were now listening. She went on by saying, "I hope I won't ruin the story for you, but when Robert said something like, 'This kind of certainty only comes once in a lifetime' I was an emotional wreck. Then, near the end, when Robert was standing in the pouring rain a few yards from Francesca waiting, asking, pleading for her to leave her husband and go away with him, I kept on hoping she would."

By now, the attendant's eyes had tears in them and I was slinking further down into my seat. My mouth was as dry as dessert sand, but the attendant was not the least bit embarrassed as she continued, "That last scene when Robert was at the stoplight and Francesca and her husband were right behind him was almost too much for me. When she grabbed the door handle and was ready to jump out of the truck and run to Robert, I was cheering her on by saying, 'Yes, YES, YES!' My husband thought I was crazy, but I could not help myself." About then the attendant realized that she had been talking for some time and needed to get back to work. She patted me on the shoulder and commented, "This book made me laugh, cry, cheer, and so much more. What a wonderful book. Just seeing you reading it makes me want to read it again."

By now, anyone within earshot was interested in our conversation and I wish I could have hid under the seat. As the attendant walked down the aisle, several nearby passengers leaned over and asked what book I was reading. Somewhat embarrassed, I pulled the book out and showed it to them. It was, "The Bridges of Madison County," by Robert J. Waller. It is a good story as well as a good love story. The movie is also pretty good (who doesn't like Clint Eastwood and Meryl Streep).

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Today, the attention I received back then would not bother me. It would be another opportunity to make a new friend and break up a long flight. Back then, I was still hung up on what others thought of me … including what I was reading.

By the way, one of my favorite quotes is when Robert said, "Things change. They always do, it's one of the things of nature. Most people are afraid of change, but if you look at it as something you can always count on, then it can be a comfort." It fits nicely with a saying that I use quite often. "The only thing constant is change."


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Ginger, Curry May Offer Cure to Kennedys Disease

The article found at this link (ASC-J9) was originally written in 2007. Some of you might have missed this article, so that is why I have this short post today. The article is well written and provides another ray of hope for those of us living with Kennedy's Disease. Also, if you Google "ASC-J9" you will see dozens of articles on this compound.

ASC-J9 shows a lot of potential. The company that is researching the potential of this compound is currently working with the National Institute of Health (NIH) to perform additional testing on mouse models to help determine the potential and safety of this drug. Once the safety and effectiveness of this compound is confirmed, the NIH will consider sponsoring a clinical trial. This trial could within the next two years if everything goes well.


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

My Guardian Angel Deserves a Medal

The dictionary defines "fragile" as "easily broken or damaged, frail, or weak."

I have always said that my guardian angel works overtime when it comes to protecting me. Occasionally, especially when it is cold, I can feel a little fragile. It can also happen on those days where I am feeling weaker than normal. When these days do come along, I have to be extra mindful of my actions. If I do not remain focused, I can lose my balance in a flash and go down. Fortunately, for my guardian angel and my wife, I do not have too many days like this.

Normally these type days occur in the winter after I have been out in the cold for some time. My extremities just do not want to work the way they are supposed to and I cannot trust my legs to keep me upright. As mentioned, it does not have to be wintertime; however, for me to feel a "fragile." It just takes the overworking of my muscles (i.e.,
by standing or walking too long) or not being focused on what I am doing to create an accident.

Years ago, I remember one of those days. My wife had a stained glass fireplace screen (several dragonflies) that she loved. Walking out of my office, I stubbed my toe on the corner of the raised fireplace stoop. As I was going down, I twisted and tried to catch myself. The only thing I succeeded in doing was grabbing the fireplace screen. I landed on top of it smashing it into hundreds of pieces. Except for a few minor cuts I was unhurt, but I would have gladly sacrificed myself (taken one for the team) if the fireplace screen had not been destroyed. My wife took the loss better than I did because I knew it was a one-of-a-kind piece that could not be replaced.

A couple of summers ago, I had another one of those days … a "Whew, that was close" moment. I was just standing up from my recliner and turned to look at something before I had gained my balance. As I fell backwards, I tried reaching out to grab the fireplace mantel in front of me. My upper torso was too far forward as I went down and I whacked my head on the side table. When these moments happen, it always seems like everything slows down and every action and reaction is exaggerated as I try to recover. Fortunately, I did not do any serious damage (my brother would comment, "There couldn't be any damage because he only hit his head"). My wife heard me falling and came a running. She saw that a water glass had spilled and the glasses that I was wearing were now on the floor, but I was just sitting on the edge of the chair, shaking my head, as if nothing had happened. Once again, the results could have been much worse if it were not for my guardian angel.

On "fragile" days, I do not have anything more to worry about than a normal day … other than sudden changes in direction, uneven walking surfaces, steps, curbs, slippery surfaces, loss of focus when walking, etc. I think you get the idea. No wonder my guardian angel is prematurely gray.


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Tai Chi and Qigong; Another way to Exercise

About twenty years ago, my wife and I visited Vancouver, BC. We loved the city. There was so much to do that it was difficult to figure out what we were going to take time to see. Of course, Stanley Park was a favorite with the bike trails, zoo, and aquarium. We also enjoyed Queen Elizabeth Park with its observatories, trails, and gardens. While at QE Park, we saw about thirty to forty Chinese men, women and children practicing Tai Chi. Just watching them perform fascinated me. The participants were perfectly coordinated in their movement. Several of the participants were elderly, but their movements were still very precise. After watching them, I commented to my wife that I have to try that.

When we returned home, I purchased a VHS tape on Beginner's Tai Chi. Whether I was home or traveling on business, I took time every day to practice. After a few weeks, I noticed an improvement in my strength and coordination. About six months or so later, I purchased an Intermediate Tai Chi video. For a few years, I did very well and enjoyed the improved strength, balance and energy. Eventually, however, I noticed that I could not hold the postures for as long and my one-legged movements and turns were becoming more difficult to perform. As my strength continued to wane, the free-slowing movements became more difficult and not as fluid.

Then about ten years ago, my boss, knowing of my health issue, mentioned that he was seeing a Qigong master (a medical doctor in China) in Los Angeles because of a health issue. He asked if I would be interested in meeting him. I did not really know a lot about Qigong, except what I had read and heard about in my Tai Chi instruction, but I was game. I could write several thousand words on my visit because it was a unique experience, but in the interest of brevity, I will just say it was fascinating. After just an hour's visit, I felt lighter, stronger and more full of energy than I had felt in some time. When I returned home, my wife could not believe how easily I walked up the stairs to our bedroom. The sensations (strength and energy) lasted for several days, but after about a week, I noticed that things were returning to normal (bummer).

I realized that I could not afford to travel across the country several times a year to see this master, so I went online and to try to find someone closer that could perform the same service. Meanwhile, my sister-in-law was traveling and mentioned my experiences to a business friend. He told her about a Qigong master in Michigan that had helped him. Moving ahead in the story … I eventually went to Michigan and spent a week living in the master's home learning the techniques of Qigong. As with Tai Chi, I practiced Qigong daily and found them beneficial. I went back once a year for refresher courses and to learn more advanced techniques. At the KDA Conference in 2002, I gave a presentation on Qigong.

Unfortunately, as my Kennedy's Disease progressed, it became more difficult to travel and, even worse, more difficult to perform the postures. I still practice a portion of the routines today, but I have not been as disciplined as I would like to be.

I would recommend Tai Chi and Qigong to anyone. Both programs are excellent disciplines that are very helpful in improving the mind, body and spirit. Tai Chi is very helpful in helping to maintain the muscles used for balance. Qigong, however, can be practiced standing, sitting, or even in the prone position, once you have the techniques down.


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Two Demons in My Life

It seems like excess stress and fatigue are two demons that seem to sap the strength right out of me.

I never really noticed the impact of stress on me until I was in a fender-bender several years ago. Because of traffic problems, I was already late for an appointment. I was feeling the stress before pulling into the parking garage. As I looked for a parking space, a car backed out of a parking stall right into me. When I stepped out of my car to exchange insurance information, I noticed my legs were like rubber and I was having a difficult time standing. I was so concerned that I might fall that I had to sit on the hood of my car. Even though I was fine (no injuries), it still took a couple of hours for my strength to fully recover.

I also have to be extra careful if I am fatigued. I cannot trust my legs to hold me up unless I remain focused. My wife and I use to hike in the mountains every chance we could. By the end of a day of hiking up and down hills, my quad muscles would be wiped out (wobbly legs … almost like rubber) from the altitude (less oxygen for the muscles) and the exercise. Any deviation from thinking about the next step especially when going downhill would result in a fall. I experienced plenty of falls in those days, but fortunately, nothing serious happened (no injuries).

Another example of the impact of fatigue on my muscles happened several years ago at one of the company's mills. I went on a tour of the complex with the mill manager. We walked for over two hours. The most difficult part of the tour was the three-story high catwalks. Unfortunately, to get to these walkways you had to go up and down a series of stairways. By the time we had finished the tour, my legs were wiped out. I was holding onto handrails and hoping that I could make it back to the offices. At the sales office, I only had six more steps to navigate to be home free. On the third step, my knees just buckled and I went down hard. The mill manager was so shocked because one minute I was walking right beside him and the next moment I was down. The result was a broken fibula and ankle in the right leg. The toughest part of the injury was the six-hour flight back home in a temporary cast. Flying six hours in filled to capacity airplanes and changing planes in Denver is an experience I never want to go through again.

Another thing I have noticed is that after a fall, it takes several moments to regain my strength. I am not certain why; perhaps it is because I am stressed because of the fall. All I know is that it is difficult to stand up immediately afterwards. The leg muscles just do not want to respond and hold me up. It usually takes a few minutes for me to regain my concentration and lock my knees. If someone is helping me up, I have to tell them to hold on until I give the okay (knees are locked and I am in control again).

I am curious. Has anyone else noticed any relationship between stress and muscle weakness? In addition, after a fall, do you have problems initially getting the leg muscles to work correctly?


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Bionics and Robotics; More than you ever wanted to know

This is a follow-up post to my earlier articles titled, "Bionic Breakthrough and "The Future is Nearer than you Think."

In this morning's Parade Magazine, there was a two-page article titled, "Restoring the Power to Walk." The article describes the ReWalk Support Suit and the current clinical trial in Philadelphia. It mentioned that if the ReWalk receives FDA approval, there would be a more advanced version offered for sale by mid-year 2011. No price was quoted, but estimates are in the $30-40,000 range. I also found it interesting that they are working on another model for people with Multiple Sclerosis and Cerebral Palsy.

There is also additional information available on the HAL (Hybrid Assistance Limb) Exoskeleton that I discussed in an earlier article. Gizmodo's article on September 10, 2009 has a video with three people walking with the "lower body" device (about 22 pounds) through the streets of Tokyo. There is also another video showing the "upper and lower body" device (about 50 pounds) in action. Wikipedia also has an article on the HAL. The most interesting article and video, however, can be found at HPlusMagazine. The video on HAL's potential use by the Army is interesting. "HAL comes in three sizes -- small, medium and large and weighs in at 23kg (50.7 lbs). A single leg version rents for 150,000 yen ($1,570) a month, while a two-leg unit goes for 220,000 yen ($2,300) a month. Tokyo rentals were initiated in August, 2009. Cyberdyne has yet to announce when HAL will go on sale to the public or what the price tag will be." The HAL 3 model (lower body only) appears to be designed for the elderly and those of us with disabilities. HAL 5 (upper and lower body), is what the military (super soldier) and manufacturing companies are more interested in.

You can probably tell by now that I find this concept fascinating. Of course, I was a big fan of the movie, "2001 - A Space Odyssey."


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Winter just does not want to end – oh joy, oh joy

We are snowed in again. It snowed most of the day Friday and then froze solid last night. I commented in any earlier post that I would not complain about the cold again this winter. Well, this post is not a complaint. I have resigned myself that this winter is one of the tougher ones, and that complaining will not bring spring any quicker to the "Sun Belt." Besides, Punxsulawney Phil saw his shadow and we all know what that means.

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I was reviewing my journal this morning and came across comments about my love for winter.

"It is unusually cold for northern Georgia this morning. It is 13 degrees and the high might reach 34. We thought we moved away from this type of weather. My hands and legs are not functioning well this morning ... the cold makes my hands more clubs than functioning fingers and hands. They just do not seem to want to work. The cold also affects my ability to use my legs. I find myself feeling much weaker. Even though temperatures in the house are still comfortable, the cold still seems to affect the functioning of the muscles. I wear long underwear, wool socks, a hooded sweatshirt, and even have heat packs for my gloves. They all seem to help, but they do not eliminate the problem. Fortunately, we are supposed to be in the 60's again for Christmas."

Being born and raised in Minnesota, you would think these Georgia temperatures would not bother me. Winter was just a part of Minnesota weather and it never slowed us down. As a teenager, we camped out when it was 35 below zero. We would hunt, fish, hike, and play football and basketball outside no matter how cold it was. One of our favorite pastimes was to wander around town during snowstorms and help people when their cars were stuck (or occasionally buried in snow). We even would snow ski in the ditches of country roads while being pulled by a car. I think you get the idea. Winter was not a hardship in Minnesota. It was just another playground for kids.

I found this cartoon and it made me laugh. If you have ever milked cows in the wintertime, you will appreciate it.

Now, when the temperatures drop below 50 degrees, I have to wear gloves. It is frustrating when you are unable to pick up a piece of paper or a glass because my fingers and thumbs will not work. If it is cold (for the Sun Belt), by the time I come in from walking my dog, I have to run my hands under warm water or wrap them around a cup of hot tea or cocoa. When the temperatures are below freezing, I use the heat packs and they help. I also wear wool gloves inside of wool and leather choppers.

When we lived in Pennsylvania, many times while shoveling the driveway my hands just could not grip the shovel. Often I would just rest the handle on the wrist to continue to shovel the snow. If it was slippery, my legs would become fatigued quickly while trying to stand or walk. I would dread falling down because I knew I would not have enough strength to stand up without help. One time during a heavy snowfall, I walked through three foot of snow to fill up the bird feeders near the back of our property. On the way back to the garage, I lost my balance and went down. In the deep snow, I just could not stand up. No matter how I much I tried to leverage myself, nothing worked. I ended up crawling through the snow to the garage.

I was recently reading the KDA Forum. A fellow KD'er recommended something that might help during these abnormally cold days. "I have found when in severe pain to buy ThermaCare products. I use the lg/Xlg back warmer for back, neck, fingers (I wrap my hands in them), etc. There's one for knees! The neck one doesn't seem to give off enough heat. It makes a car trip bearable, the nighttime manageable, and daytime I can somewhat keep up with my kids. Well worth the cost. I buy in bulk at SAM's." I am not considering these ThermaCare products for pain relief; I want them to warm my body.

I wonder if Punxsulawney Phil would ever consider accepting a bribe?

 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.


 

The Spirit is Willing, but …

By now, you can probably tell that I like to write. Whether I am any good at it, is something for each of you to decide. I never thought of writing anything until my 50s and then I found the passion. My biggest problem with writing is consistency … writing every day. When I am in the zone, I find it easy to write for hours. Unfortunately, my discipline began to wane a couple of years ago and I found myself writing less frequently. Once I stopped writing every day, the stories (my imagination) began to dry up. Where I once found it easy to "get into character," I now struggle with it (regaining that sense of being … the character's personality).

Several years ago, I finished my book (a fantasy story) and edited it once. It now sits in my office closet because it needs another edit and I just lost interest. Writing a story is the easy part. Editing your story is hard work requiring a lot of patience and a cutthroat attitude. I find it difficult to edit my own stories. I often tend to see what I thought I wrote and not what I actually wrote.

I published several short stories in the "The Writer's Corner." Some stories are true, but most are just figments of my imagination even though some are based upon personal experiences. "Brothers in Blood," "No Two Minute Warning," and "Will I Finally Find Some Peace?" are stories about my second Vietnam tour. "A Cat's Tale" and "Broken Promises" are stories about our two cats. They are based upon many personal experiences and observations. "The Age of Innocence" is the first story I wrote and it was actually published in a magazine. I have a few more stories that I wrote, but have not taken the time to publish them. Do you see what I mean about "lack of discipline?"

One selfish reason I began blogging was to see if I could regain that discipline that is needed to write daily. So far, I have done pretty well. I am also reading a lot of articles on blogging in an attempt to improve the quality of the articles. Unfortunately, I have not found that rhythm that I felt a few years ago where stories came to me night and day, and writing was exciting and fulfilling.

What has this post to do with Kennedy's Disease? Since I am retired and find it difficult to hike, work in the shop, play tennis, sail, ride my bike, or do most anything else outdoors, writing became my passion. It allows me to redirect my creative side and keep my mind and hands busy. You could call it a hobby, but in many ways, it is so much more.

This post is meant to be a self-confession and hopefully a wakeup call. Let's hope it works because "I feel the need."


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Embarrassing Moments – A grand entrance

Our company's senior managers had a meeting in Seattle. Since I operated on East Coast time and have always been an early riser, my body had a difficult time adjusting to late dinners. On these West Coast trips, I usually never slept more than four hours a night. On this day, we spent the entire day sitting in meetings with only a couple of short breaks to make phone calls and catch up on our voicemails. At 7:00 PM, everyone met in the lobby to go to dinner at a great seafood restaurant near the locks in northern Seattle.

That evening, instead of the normal Seattle drizzle, we had hard rain. Several of us rode with the mill manager from Longview in his four-door pickup. It took us about thirty minutes to drive to the restaurant, but the great food and service made the trip worthwhile. Unfortunately, the dinner dragged on until about 10:00 PM, so it was late by the time we returned to the hotel.

The mill manager drove around back to the parking lot. The only parking space available was about thirty yards from the entrance. Since the rain was pouring down, everyone bailed out of the truck and made a run for the hotel entrance. At this point in my life, I was no longer running and could only manage to walk fast. About ten yards from the hotel's entrance, I, unfortunately, stepped into a storm-drain indentation in the asphalt. It was just steep enough to cause my ankle to roll over and I went down. By then, everyone else in the party was inside the hotel and there was no one around to help. I looked for a car or anything else nearby that I could grab a hold of to help me stand up. There was nothing even close, so I tried a few times to gain enough leverage to stand, but just could not do it. I again took the time to look around and saw a trashcan near the hotel's entrance. I crawled over and managed to pull myself up and make it inside.

I walked through the hotel lobby soaked from head to foot. I casually walked by dozens of curious onlookers to the bank of elevators. When the door opened, I stepped into a mirrored elevator compartment and, for the first time, saw how ridiculous I looked. Water was dripping off me and a puddle was forming on the floor.

As the doors began to close, someone yelled, "Hold the elevator, please." Without thinking, I put my hand between the closing doors and stepped back. A man and woman, both pulling luggage, came jogging towards the doors and the man said, "Thanks for waiting." As soon as they saw me, however, they stopped dead in their tracks. The two looked at me, then at each other. The woman shook her head, and then the man said, "Thanks anyway, we'll wait for the next one."

Talk about making a good first impression!

Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Muscle Memory – Part II

Back in August, I wrote an article on "Muscle Memory." Wikipedia defines Muscle memory, also called neuromuscular facilitation, as the neuromuscular system's memorization of motor skills. For example, when an active person repeatedly trains movement, often of the same activity, in an effort to stimulate the mind's adaptation process, the outcome is to induce physiological changes that attain increased levels of accuracy through repetition. Even though the process is really brain-muscle memory or motor memory, the colloquial expression "muscle memory" is commonly used.

In our KDA Forum, a man references that previous memories of movements that your nervous system has used for years to coordinate your muscles no longer seem to work. His comment:

"Forgetting Previously Reflexive Movements - The realization that movements your nervous system built pathways for when you were a toddler and that you have been doing since then without conscious thought can no longer be done by reflex. The first real memory of this was 3-4 years ago. I was walking across a parking lot toward a 6-8 inch curb, when all of sudden; PANIC! I did not know how to step up onto the curb without losing my balance and falling. The last 20 feet of the walk was a series of calculations, how long is my stride, what foot will I step up on, is there anything to hold onto, how did I do this yesterday?"

His comment made me flash back to when I was still working. Our company had two buildings and rented space in a third building for training purposes. To get to the third building I had to walk across the parking lot and step up onto an island, walk another ten feet, step down off the curb, and then walk across another parking lot. The entire distance was perhaps a hundred yards. Several of my trips over to the training facility sounded something like the comment from the man mentioned above.

As I approached the curb, I found myself eyeballing the giant step (perhaps eight inches). The closer I came to the curb, the more my mind would run through all the options of how I was going to climb Mt. Everest. Fortunately, on several trips I was able to navigate my way over the obstacle, but not easily (balance when stepping up played an issue also). I always looked around before trying to step up on the curb and after making it up on the curb to make certain that no one was watching. One day as I approached the curb, my mind raced once again wondering if I could make it up and over one more time. I stopped, lifted my leg up, and placed it on top of the curb. That was it. I tried to put weight on the leg that was up on the curb, but could not. For some reason my muscles would no longer allow me to make that step up. I switched legs, but that did not help either. I tried two or three other options (i.e., side lift
and grab a branch), but I just could not step up on that curb. Talk about an embarrassing moment. I considered a couple of other options including walking all the way around the block, but finally gave up. I marched back into the building, picked up my car keys and drove over.

From that time forward, I always drove over. What was so strange about this last incident was that my muscles just did not want to respond (the quads lifting the body up).

I have had similar experiences over the years and find them frustrating. Once this happened a few times, I found that mentally focusing on the muscles … almost willing them to perform a certain way … is something that still works (until the muscle group is no longer strong enough to perform the task). As people age, many often refer to those "senior moments of memory loss" that randomly occur where they temporarily cannot remember a name or a word. Well, perhaps these experiences are "Kennedy's Disease moments of muscle memory loss." What do you think?

I would be interested in hearing from you on this subject. Have you had any experiences where something similar happened to you?

Bionic Breakthrough

Sometime back, I wrote about the robotic devices that could someday make it possible for us to walk and take stairs safely as Kennedy's Disease progresses. Well, yesterday I was watching Good Morning America on ABC and they had a clip on a fourteen person clinical trial that is being carried out at thee Moss Rehabilitation Center in Philadelphia, Pennsylvania. The trial is to see if something called the ReWalk (bionic legs) manufactured in Israel by ArgoMedtec can allow paraplegics with serious spinal cord injuries to stand up, walk, and even take stairs. You have to be able to use your arms to make the device work. The company hopes to have FDA approval by the end of this year.

Go to ABC News – GMA, click on the Thursday tab and in the second row is a video for Bionic Breakthrough. For a longer video that shows more of the capabilities of the ReWalk, go to Med-Gaget. An excerpt from the article follows:

ReWalk comprises a light wearable brace support suit which integrates DC motors at the joint, rechargeable batteries, an array of sensors and a computer-based control system. It fits the body snugly to detect upper body movements, which are used to initiate and maintain the walking process. Wearers also use crutches for stability and safety.

ReWalk is undergoing clinical trials in Israel at the Rehabilitation Hospital at Chaim Sheba Medical Center - Tel Hashomer, with pilots planned for rehab centers in Holland and Italy. A US trial is scheduled to begin in November at the Moss Rehabilitation Center in Philadelphia, after which Argo will apply for FDA regulatory approval.

Argo's demo video features team member Radi Kioff, a 40-year-old Druze Israeli citizen who was shot in the back while serving in the Israel Defense Forces during the first Lebanon War. Ironically, the man who devised the system that allows Kioff to walk cannot benefit from his own invention. A quadriplegic, Amit Goffer has only partial use of his hands, but not enough to operate the ReWalk.

The manufacturer, ArgoMedtec, also has a webpage that discusses the ReWalk Robotic Suit. An excerpt from this page follows:

ReWalk™ works with users – not just for them. Users walk with the assistance of crutches, controlling suit movement through subtle changes in center of gravity and upper-body movements. In addition to simplifying suit control, this user participation in mobility brings tangible health and emotional benefits. ReWalk™ is not just a vertical wheelchair – ReWalk™ restores the element of control over mobility so lacking for wheelchair users.

As any sedentary wheelchair user can attest, life in a wheelchair carries a hefty healthcare price tag. Serious problems with the urinary, respiratory, cardiovascular and digestive systems are common, as well as osteoporosis, pressure sores and other afflictions.

Functionality:

• All day usage
  
• Mobility – walking, sit-to-stand, stand-to-sit, climb stairs, ascending/descending slopes, driving
  
• Training – replacing other training equipment at home and at rehabilitation center
  

Prerequisites:

• Ability to use hand and shoulders (walking with crutches)
  
• Healthy cardiovascular system and bone density
  

I am not saying that this will work for any of us living with Kennedy's Disease, but it sure seems like it might be something that could help us remain ambulatory longer.


 
Please feel free to comment. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader by sharing your opinion, experience, or a helpful tip. You can comment by clicking on "comments" below or by sending me an email. I look forward to hearing from you.

Taking time to say, “THANKS”

It is time a take a short break and let you know how much I appreciate you reading my blog. I have been blogging now for five months and published 92 articles. When I started, I really did not know what to expect or whether anyone, other than my family, would read these articles. I hoped to be able to reach out to a few people struggling with Kennedy's Disease (Spinal Bulbar Muscular Atrophy) and perhaps provide support by letting them know that they are not alone. I felt that if I could touch a few lives that it would all be worthwhile. I also wanted others to know that living with Kennedy's Disease is something that not only affects the individual, but it also affects the entire family. Finally, I wanted to personalize the story so that everyone could understand the pain, frustration, and, most importantly, the humor that comes with living with the disease. Humor, in many ways, is our salvation. If we cannot laugh at ourselves, than it would indeed be a terrible disease.

Well, after a slow start, readership is picking up and more people are commenting (either by email or in the comments section at the bottom of each article). Almost 1,100 people from 51 countries have visited my blog and there has been over 4,100 page reads. That is not a lot in the blogging world, but to me it still seems to be a lot. An even more interesting statistic is that January's readership is up 13% over December (my previous highest month).

When I first conceived the idea, I never knew what to expect or whether I would have the discipline to continue to write three-plus times a week. Several times I did not believe I had another topic to write about in me. Then, magically, someone posts a comment (or sends an email) telling me how much he or she liked an article or they share some useful tip that might help me. Just knowing that someone still finds the topics and my style interesting, informative and/or enjoyable seems to keep me going.

So, today I am stepping back from my normal articles to say, THANK YOU for reading my blog. And, thanks to everyone who has commented. Comments, whether positive or negative, are important to me. I believe comments add much to the articles because they reflect support, another point of view, an experience, or an issue that others need to consider. I would also be interested in your thoughts on other topics that might be of interest.

In closing, let me say again, please feel free to comment on my articles. By taking a moment to share your thoughts you add much to these articles. The articles then become more than just something I said or believe. In addition, by adding a comment, you might just be helping the next reader. 

And always remember, you are not alone!

One way or another, we are all living with Kennedy's Disease because we now know someone who shares that unique DNA mutation.


 
BTW: This coming Sunday's article deals with Muscle Memory. I would really value your comments on that subject because it intrigues me.

The Maturing Process

… Thoughts on growing old with Kennedy's Disease

One thing I noticed as I lived through thirty years progression of Kennedy's Disease was that what negatively affected me (mentally and emotionally) in my late twenties and thirties is often no longer a concern today. What I thought was earth shattering back then is now something that I live with every day. In other words, I have matured with the disease and discovered more about it and its impact on my family's daily lives and me. In the process, I also began to learn more about myself, my family, and our ability to adapt and cope. Most importantly, I learned that people are there for you when you need them as long as you do not push them away or block them out of your life.

Especially in the beginning of my battle with this disease, I was unable to share the intimate details of the potential impact of Kennedy's Disease on our lives and our future. I feared the worst and hoped for the best. I told little 'white lies' when asked if anything was the matter because admitting that I had the disease was something out of the question ... especially at work. I looked at it as a weakness, something that will make me less of a man (husband, father, breadwinner, and co-worker). Today I realize that the real weakness was my inability to discuss the truth with family, friends, and co-workers. Life would have been far simpler had I just been open and honest about my health issue.

I now understand that living with the disease is never as bad as what I originally imagined and, in some ways, is much worse. The most difficult part about living with the disease today is seeing how far my strength has deteriorated over the last thirty-plus years and wondering how much further it will go. I still live with the fear that I will someday become a burden to my wife and I would hate that.

I live with the creed that "safety is job #1." When I am hurt because of an avoidable fall, I am not the only one that suffers. My wife has to change her life to accommodate my injury. That is why today I error on the side of caution. Yes, I could be more mobile, but at what price (if I should injure myself again).

The Serenity Prayer, "God grant me the serenity to accept the things I cannot change (i.e., my health issue), the courage to change the things I can (i.e., my attitude and patience), and the wisdom to know the difference (i.e., maturity)," is also something that I need to fully embrace.

"Patience fosters acceptance"