Carpal Tunnel Syndrome

Sometimes I think to myself, will it never end? It seems I am at the beginning stages  of developing carpal tunnel syndrome.

In case your are unfamiliar with carpal tunnel, I will elaborate briefly. Your carpal tunnel is located at your wrist, it creates a "tunnel" under which a major blood vessel and a large bundle of nerves travel. These nerves control the complicated movements of your hand and fingers.

Through repetitive motion, these blood vessels and nerves become inflamed, increasing their size and becoming somewhat compressed, resulting in numbness in the fingertips and thumb.

I am reasonably sure that this occurred in my right hand for several reasons. First of all, it is the repetitive motion of my hand moving the wheelchair, something I hope to lessen as time goes on and I can walk more frequently on prosthetics.

I also put a lot of pressure on the palms of my hands while walking on a walker. Additionally, I put a lot of weight on my hands and shoulders when I transfer from the wheelchair to the bed, shower, etc. And last but not least, I work out five days a week using dumbells ( no one I know).

It is not an uncommon syndrome to develop given the fact my arms, hands and shoulders are doing a lot of the work my legs used to do.

Where do we go from here? Well, Although I haven't been officially diagnosed yet, the physical and occupational therapists are pretty sure it is CTS. I will be tested for this on Wednesday. I am going to my vascular surgeon, Chad Jacob's office, just to be sure it is not a vascular related problem.

After the diagnosis I will begin guess what? more therapy. This time it will be occupational therapy, doing excercises that will "open up" the carpal tunnel.

I have already begun wearing a wrist brace per Dr. Jacob's physician assistant's advice. This brace helps keep my wrist in a straight position, this is particularily imporant during sleep. I have also googled CTS and have viewed some YouTube videos of excercises that are supposed to be beneficial. I have already begun my own therapetic regimen pending the upcoming diagnosis and occupational therapy.

I would be lying if I said all of this does not bother me. What frustrates me most  is that I have been able to maintain my independence in spite of losing both of my legs and now through some of the actions I take to remain independent,  I have developed yet another problem.

Hopefully I have caught this syndrome in it's early stages, the beginnng of which is the numbness I now experience. CTS left untreated can cause an inability to grasp and hold items (like a paintbrush or pen) and eventually causing severe pain up the entire length of your arm. The worst case scenarios result in corrective surgery.

I am definitely not going there. I believe CTS can be treated successfully through excercise and diet.

I have often felt that in a world of too much information, too often, we can get information overload. This is the case with this whole carpal tunnel thing. I don't want to focus on what can happen, I want to focus on now and what I can do  to help myself now.

I am remaining optimistic and proactive about all of this, but sometimes I think it would be nice to have a  break from my medical issues.

As we get older it becomes a game of maintenance. We try to maintain what came so easily and freely when we were younger. As has been said many times before, "it sure beats the alternative."

Another quote I like is what Cher says, "Getting old sucks."

    

HomeMod

Some of you may not be aware of the fact that I had my hall bathroom remodeled this past summer. I had the bathtub and shower doors removed and a walk (or wheel) in shower installed, to better accomodate my disability.

I was able to have that work done through a program called HomeMod, short for Home Modification. This is a city sponsered program for persons with disabilities under the age of 60. Fortunately I qualified for the program.

Not only did they lower the floor where the tub previously resided, but they also completely retiled the floor and the shower walls. Additionally, they replaced  the vanity sink with a pedestal sink and a new mirror.

The bathroom looks fantastic and better suits my needs, adding safety, ease of accessability and beauty. What more could you ask for?

The workmanship was exemplary, the entire project was started and brought to completion, including clean up and disposal, in five days.

Mark Nobriga, the man in charge of the program, had originally come to my home to discuss at length what my remodeling needs were, with respect to my particular disability, and how the HomeMod program could be of assistance. Several weeks later after the remodeling was complete, Mark came back to my house to take pictures of the remodel.

While Mark was here he said that the HomeMod program was going to be featured on an ABC Channel 7 News segment. He then asked me if they could film my bathroom and interview me for the segment. I explained that I would be happy to participate in anything that would glorify the program and help insure it's continued success.

On November 8, Karen Tamley, Commissoner of the Mayor's Office for People with Disabilities, along with Mark Nobriga came to my house for the interview.

Karen Tamley, a wonderful lady, is in charge of all affairs concerning programs, accessability issues, and potential grievances for the disabled here in Chicago. She heads a department of the Mayor's Office specifically geared toward equality of opportunity for those who are disabled. Her position with the city and the importance of her work cannot be understated. It was an honor to have met such an accomplished woman and have her visit my home.

I know this may be confusing but there is another woman named Karen Meyer, who has been with ABC Channel 7 News for many years. Karen M. has been actively addressing the concerns and introducing programs for those with disabilities for a very long time through the news media. I have seen her on the news many times.

You can imagine my surprise when I learned it was Karen Meyer who was going to conduct the interview for an upcoming segment on Channel 7 News, promoting the HomeMod program.

First, Karen Meyer of Channel 7 interviewed Karen Tamley Commissoner. (I told you it was a little confusing with two Karens). Karen T explained to Karen M the importance of the HomeMod program. She continued to elaborate that the city of Chicago faced many challenges regarding accessability issues for the  disabled. One of the primary problems is that most residential buildings built before 1980 were vertical in structure with staircases, causing major hurtles for those with mobility related disabilites.

Listening to Karen Tamley speak made my admiration for her grow even stronger. She has devoted her entire career to helping the disabled live better, safer and easier lives, what a wonderful accomplishment.

Likewise, Karen Meyer of ABC Channel 7 News, has devoted her career to helping the disabled. She has been instramental in getting information out to the public regarding programs aimed at assisting the disabled. Karen M. through the news media, has helped countless persons with disabilities.

The entire process of filming this news segment has allowed me to meet these wonderful people, who have accomplished so much for others. It was an experience I will never forget.

I don't know the exact time and date this news segment will air onChannel 7. When I do know, rest assured I will pass that information to you either through my blog, email, facebook or the good old fashioned way, the telephone.

I have said this before but it bears repeating, "through great losses come great blessings." That statement was made to me by my friend and author, Michelle McKinney Hammond.

Meeting these three people Mark Nobriga, Karen Tamley and Karen Meyer has been one of those blessings I have received through my loss and I am truly thankful.

If  you are disabled or know of someone who is, this program HomeMod, could be of great assistance in helping  live happier and easier lives. You may contact this program through the website: www.cityofchicago.org/disabilities to download an application.

A New Order

At a recent physical therapy appointment I was surprised to learn that Chris, my therapist, and Jason, my prosthetist, want me to try a completely new approach to learning to walk. The new procedure is called, "Short Leg Graduated Protocol" (SLGP).

Jason, a lifelong amputee himself, and a very accomplished athlete, had recently attended a seminar with other prosthetists, physical therapists, and doctors who have taught many bilateral above knee amputees to walk quite proficiently.

Short Leg Graduated Protocol (SLGP) was developed by Kevin Carroll, MS, CP, FAAOP, to train bilateral transfemoral amputees (like me) to confidently ambulate within the community on full length legs. The SLGP was developed to clearly define and systemize the key elements for bilateral transfemoral amputees to achieve successful prosthetic use.

The above paragraph was taken directly from a handout given to the attendees of the aforementioned seminar called, Prosthetic Management of Multiple Limb Deficiency.

This method has helped many war veterans with limb loss regain their mobility, many of whom were taught at Walter Reed Medical Center.

What the technique involves is quite different from what I have been trying to do. Instead of continuing the  way I have been for the last five monthes on two full length prosthetics, I have now been fitted with shortened legs that do not have knees.

Over time the length of the legs will be increased and the knees will be reincorporated into the legs. The purpose of learning to walk using shorter legs is multifaceted. First of all, the closer your center of gravity is to the ground the better your balance will be, hence the shortened legs.

The idea of this SLGP program is for me to live in these legs as much as possible and become as proficient as possible at a myriad of tasks, not the least of which is learning to fall correctly and standing back up.

When I speak of shortened legs I mean shortened! It is similar to having your feet attached where your knees would normally be located minus the knee component completely. The first time I tried on the preliminary shortened legs, my appearance almost brought me to tears.

I have been 5'10" tall all of my adult life and while wearing the shortest legs I am about 4' 8" tall. Visually this was quite a dramatic and shocking change.

Since this idea was introduced to me about ten days ago, I have experienced many ever changing emotions. One of the first things Chris said to me, upon presenting this idea, was not to look at changing from the full length legs to the shortened legs as a failure.

One may ask, as I did, if it is not a failure then why are we changing the status quo (learning to walk on full length legs)? There are at least two reasons. First of all, because I was so adept at walking on one prosthetic leg and a walker within days of losing my second leg, the doctors, prosthetists, and therapists thought maybe I could walk directly on two full legs, which I have, however not as proficiently  this new program has demonstrated.

The second reason is because many feel that losing a second leg and then being put in shortened legs and introducing SLGP immediately would have been too much of a loss all at once.

Whatever the reasoning may have been, I have decicded to give SLGP a try. I could not live with myself without exhausting all the possibilities presented to me that will enable me to regain as much normalcy as possible.

I must admit that when the idea was originally presented to me I felt somewhat discouraged. I still do not have the final shortened legs. I will receive them this Tuesday and I will begin my new learning process.

I have been accused of being an "A or Z" person, looking at situations as all or nothing, disregarding the entire area inbetween. It is true I do have a tendency to overlook the middle ground. I am choosing not to do that in this particular instance. I will try living my life and learning to walk on shortened legs, but at this stage only in controlled enviroments, i.e. the therapy gym and at home alone.

I really have to stay focussed on my goal of  walking on full length legs in order to put myself through the stringent SLGP program. I know it must be difficult for you to understand the emotional and psychological affect using shortened legs  has on me.

The reason I am writing to you about all this is because I want us, you the reader, and me, the participant  to go through this procedure together.

This Shortened Leg Graduated Protocol is completely foreign to both of us. I thought by writing about this to you we could witness, figuratively, the emotional and physical changes of the next few monthes.

I know in the end I will walk better and live a more normal life, I must keep that thought in mind at all times, although that is easier said than done. As my dear friend Ruth pointed out, "it is just as easy to look at this positively as it is to look at it negatively, possibly easier."

As I have always done throughout my limb loss scenario, I will remain positive and optimisitc about my success, knowing all of you, my readers, are rooting me on, gives me strength. I thank you for that understood encouragement. 

A Few Kind Words

I had originally written this blog on October 25 but I left my blog notebook at the prosthetist's office, so here it is now.

I am sitting in the prosthetist's office having yet another "top" put on my left leg. It seems as though these appointments are never-ending and perhaps they will be. I have come to the conclusion that the fittings and refittings are just a part of this whole leg loss scenario and I have learned to accept and appreciate it as a part of wearing and walking on prosthetic legs.

What I would like to address is something I experienced yesterday (which was really two weeks ago now).
I was going to my usual Monday morning physical therapy appointment and when I wheeled past the glass doors into the reception area, another waiting patient said to me, "you are amazing." I thanked her and it was then I realized she had seen me at previous appointments.

As my therapy continued with my beloved Chris, everything was going reasonably well. After walking with the walker, we decided we were going to practice walking a few steps backward on the Canadian crutches. The previous week, I came as close as I ever had to falling, while attempting to walk backward and sit down. Both Chris and I were surprised that I had such difficulty walking a few steps backward.

As I was walking past the same patient who had complimented me earlier, she asked me if I "worked out?" I said that I did. She commented to her therapist, David, that she could tell I worked out because of how strong I appeared. She went on to say that her physical problems paled in comparision to mine. She continued to say that she had never seen such determination and again she thought I was amazing.

I thanked her for her comments and told her how good she made me feel. Actually those positive comments she gave me set the mood for my entire day.

It is astounding how far a few kind words can go in making someone feel good about themselves. Receiving positive feedback from others has an  uplifting and longlasting affect on the person who is the object of kind words. I have believed for quite some time that passing along a compliment or two to another makes that person and you feel better. It is a win win situation.

Why then are people so hesitant to compliment others? It doesn't cost anything and the potential benefits are incalculable. I have always tried to applaud the good works or deeds of others through my words because I know how it feels to be on the receiving end of a compliment.

It is kind of like telling someone you love them, people don't tell each other how they really feel because often times, they think the other person already knows how they feel; that is not always the case.

A few kind words can go along way in making another person feel better and generally have a brighter outlook on their day and even their lives.

Steve has told me on numerous occasions that he feels people are very guarded with respect to being open about their lives. He feels when you are too open about your life you make yourself vulnerable to others. It is this vulnerability that prevent people from complimenting others. Sometimes individuals are concerned that their kind words may be misconstrued, as a "come on" or otherwise misunderstood, consequently they say nothing. I say, "who cares." I cannot be any other way than what I am. I do not live my life in secrecy as this blogs attests. I am pretty much an open book, what you see and hear from me is pretty much genuine and true.

If I like your outfit, I will tell you, if your hair looks good, I will tell you, if I am proud and thankful you are a part of my life, you will already know it because I have already told you so.

If we could all pay more attention to trying to be kind with not only our words but also our actions the world would be a better place. I have been trying to do my part for a long time and I will continue to do so.

Please join me in making our world a more pleasant place to live. By the way I have I told you lately how happy I am that you take the time to read my blog? Your participation in my life, in and of itself makes me happy, thank you.

Getting There

I remember back in the early to midnineties I was taking a shower and I noticed some numbness in my right leg. Additionally, I had always been plagued with leg cramps, an occurance that is usually associated with adolescence, often called "growing pains." However, my leg cramps continued to bother me for many years past adolescence.

As is human nature, I really never gave it much thought except for the usual complaining that one would casually mention to others.

Little did I know that these were the first signs of a disease that would eventually lead to loss of both of my legs. As time wore on, I began to have trouble walking distances, this was something I could  not understand.

It took many years for my blood disorder to progress to the point of bloodclots. Perhaps five years had passed before I experienced my first bloodclot, that was the beginning of the end for my poor legs.

I recall a time in the mideighties, I was selected and served on a jury. The case presented to us jurors was a woman in her late eighties who had fallen in a restaurant, claiming the fall had caused her to lose her hearing. Much of the testimony that was presented was by medical professionals. It was determined the woman suffered from precpicuous, a medical term describing the gradual loss of hearing due to old age. I remember a doctor stating with respect to hearing loss, most people do not notice their hearing loss until fifty percent of their hearing is gone.

Such was the case with my gradual difficulty in walking distances. It is with great trepidation that I bring to light the feelings of fear I experienced when in December 2001 I was admitted to Cook County Hospital, which incidentally was the last year of operation for that one hundred year old decrepit hospital.

As I was lying on a gurnee I looked up at the ceiling with old paint hanging in sheets, about to fall, that I began to cry. I wondered how my life had deteriorated to the point where I was in such a situation and in such a place.

Never in my wildest dreams could I have foretold what lie ahead for me in the upcoming decade. A decade of never ending surgeries, recoveries, loss of income and a general downward spiral.

Have I gotten your attention? I hope so because this is how I will start the book I plan to write.

The idea of writing a book about overcoming adversity, has never left me. I feel this blog has given me the confidence I need and has helped me develop the skills necessary to put down on paper my life experiences in a cohesive and comprehensive manner.

As I have explained  previously in other blog entries, this book which may end up being called, "Overcoming Adversity" is a book written to and for the everyday man or woman who find their lives embroiled in seemingly overwhelming circumstances.

What can we as individuals do for ourselves to remain optimistic and positive while facing serious ostensibly insurmountable odds?

How do we face medical challenges head on?

Where do we find strength, courage and perseverance?

For me it has been a journey of introspection, going deep within myself and pulling forth a strength that I believe everyone has within themselves. I have done this not even realizing I had that kind of strength to begin with. The inner strength I speak of, for me is God, you may prefer to call it inner spirit, divine knowledge, an innate wherewithal or whatever you chose to call it. Most importantly is the acknowledgement of a inner supply of will or determination available to us simply by seeking it out. The essence of the Bible scripture that states, "Seek and ye shall find." illustrates my point exactly.

It is a matter of believing in yourself and wanting to maintain quality, dignity, self-repect and grace in your life. I have never allowed myself to be resolved to a life less than what is actually possible in my circumstances.

As we know I am still on my journey of relearning to walk, which is key to my happiness and survival. My path has been a rocky one to say the least and there are certainly moments of discouragement and sadness.

I am constantly monitoring my mental state, paying particular attention to how I speak and think to myself about my life. Everyone has negative thoughts from time to time but it is up to us to not allow negativity to get a grasp on us. We will continue to seek happiness and fulfillment if we keep negativity, in all it's forms, at bay.

Paying attention to what we say or think to ourselves has a large impact on how we feel and what we do. Recognizing negativity in all of it's forms, either overt or the most insidious type of negativity that seems to rear it's ugly head at every opportunity, for no good reason, is paramount.

Happiness coupled with positivity are merely different states of mind. We can learn to control our thought patterns and be alert to negative thoughts as they emerge.

One of the ways that has been most beneficial to me is to immediately change my thoughts of helplesness or hopelessness to thoughts of appreciation of all the good things in my life.  By focussing on family, friends, pets, your home, your hobbies or the passions you have in your life, will redirect your energy flow in positive constructive directions.

Sometimes I wonder do I have what or it takes to write a book that will be uplifting  and beneficial to other people? Can I put into words how I have managed to maintain a level of happiness and fulfillment in spite of the dramatic and life changing loss of both of my legs?

I believe I am getting there or perhaps I have already arrived. What are your feelings?



  

Shaking Things Up

I am standing in those Canadian crutches, no easy task

We all have a tendency to allow our lives to fall into an established pattern or routine because  it is familiar and easy. My physical therapy sessions have fallen into that category until Chris, my physical therapist, decided to "shake things up" a bit--a successful attempt to get me more motivated.

Trying to maintain the line between professionalism and frendship between Chris and myself has become somewhat skewed. Because she and I enjoy each other's company so much it was easy for friendship to blossom.

Last week Chris said, "I have to talk to you about something." I said, "Chris you can talk to me about anything." She went on to ask me what I hope to achieve through my therapy and what my ultimate goal was? I replied that I thought we had already eastablished my goal-- to walk unaided.

Chris continued to explain that I had completed forty PT sessions in twenty weeks and although I had made great strides in that period, I had reached a plateau of sorts. I realize that the conversation we had was not easy for her, as she did not want to belittle my achievements thus far, but at the same time we had to move further along, if that is what I wanted to do.

She went on to say she has a responsibility as a physical therapist to report my progress and she felt that in order to get closer to my ultimate goal, we had to become a little more daring, trying bolder and more advanced techniques.She had even mentioned that perhaps I should take a break from therapy so that I could perfect what I had learned by putting it into pracitical everyday use.

The next logical step in my progression is to move from walking with a walker to walking with Canadian crutches. Canadian crutches are the type of crutches that have the bands that wrap around your forearms.

After our conversation something must have struck a chord in me and I walked within the parallel bars, but not touching them, on Canadian crutches. This was the first time I had done that and it was yet another milestone in my progression.

After completing the walk I asked her if I should just finish my already scheduled appointments and then take that break she had mentioned earlier. Chris said, "well not now, not after you have just walked on the crutches for the first time. I think we should keep going."

At today's session I stood up from my wheelchair using one bar and one Canadian crutch and proceded to walk within the parallel bars on three seperate occasions. These recent accomplishments were a result of our conversation from the previous week. I don't think Chris set out to deliberately put pressure on me to perform at a higher level, but she got her point across. Serendipity at it's best!

Progressing in my journey to learn to walk on two above knee prosthetic legs is going to involve some calulated risk. If I want to remain walking on my walker, that of course is my perogative, but anyone who knows me, knows that will never be good enough.

Walking those few times on those crutches has remotivated me to continue down my path to see just how far I can get. Sometimes we all need to have things "shaken up" a bit to get ourselves going again.

Stepping outside our comfort zone is not always easy, it is even harder to "step out" with prosthetic legs, but great strides and achievements are not always easy. (Excuse those puns).

Thank goodness Chris and I had  our little talk, it has helped me tremendously. I hope all of you have someone like Chris in your life to help "shake things up" from time to time, it keeps life interesting.

Being Human

Let me try to paint a portrait for you of what it is like to walk on two above knee prosthetic legs. Imagine if you can walking on two stilts. I used to describe walking on my prosthetic  legs in that manner, however it is not quite accurate.

Imagine trying to walk on two stilts that both have hinges in them (the knee), that is actually a better description of what walking is like for me.

A couple of weeks ago at physical therapy we tried something different. The exercise was to try to walk without using a walker outside the parallel bars. My therapist, Chris, was in front facing me with my hands on her shoulders. My prosthetist, another Chris, was behind me trying to help me get my hip motion correct, by moving my hips as I attempted to walk.

It was one of the most terrifying things I ever attempted to do. Suffice it to say I was not successful. The reason I am writing this is because I was shocked at how much fear it evoked in me. Rarely, if ever, do I have such feelings of fear with respect to this whole leg loss scenario.

I am almost at a loss of words to describe the feelings of being completely out of control that I felt. A lot of what I do when I walk, stand, sit and reach for things in a standing position involve some degree of loss of control but I have learned to recognize those feelings and over time have developed a degree of control that doesn't involve fear.

Of course the terror I was feeling was evident not only my face but I practically decapitated Chris by grapping her neck to keep my balance. After I calmed down from the incident I tried to explain why I reacted the way I did, which by the way was completely unexpected. Chris, my therapist, said she understood and admitted although she is in a profession where people in my situation are not uncommon, she still cannot accurately feel what I feel.

I guess the question that remains in my mind is where did that feeling of fear come from and why is it there? I suppose anyone could have or would have reactly similarily and yet I was surprised and disappointed  that I did not handle it more successfully and with more dignity. I have looked at You Tube videos of bilateral above knee amputees who walk unaided up and down hills, play golf , etc.and that is still my goal, however the unexpected fear I felt sometimes makes me wonder if I am being unrealistic.

I am trying to understand fear and I already know that a lot of fear is caused by lack of faith.

Another bewildering reaction occured last week that was also surprising  to me. I had been having a really good day. Bill and I had gone to Costco and we were back at my place. I stood in the kitchen and for some reason my left leg became detached, probably because I inadvertantly hit the release button. Be that as it may, although I was slightly irritated I went to the bedroom,  reattached it, and never gave it much thought.

A short time later I heated some black bean soup for lunch. I had already given Bill his portion and had my bowl of soup balanced on my lap as I wheeled into the living room.  It fell off my lap, the bowl broke and the black bean soup flew everywhere.

My intial reaction was anger and irritation quickly followed by an onslaught of tears. I sat there momentarily crying not over spilt milk but over spilt soup. I do not know why I reacted the way I did. Fortunately Bill could see how upset the incident had made me and without speaking a word jumped into action, cleaning up the broken soup bowl and wiping up the spilled soup.

Again I don't know why I reacted the way I did and it bothers me. I talked to Steve about it and he said it was probably pent up frustration that had been building over time. He continued to say he realized to a greater or lesser degree how difficult and frustrating doing everyday tasks must be for me.

Now you may be asking yourself why is he writing about all this?

After having read Eckhart Tolle's book, "The Power of Now" several times, the book advises that we step back in a nonjudgmental way and look at ourselves observing our various reactions in various situations. My observations have made me aware of myself. In an attempt to be nonjudgmental, it has revealed to me that perhaps I could begin to get a better grip on my emotions and reactions and find that inner peace which we all harbor within ourselves.

After I had begun writing  this particular blog entry (yesterday) and before it was completed, I had my usual physical therapy appointment with Chris. I told Chris what I  was writing about and she said we are all human beings and anyone could have reacted in those situations the same as you. She went on to say that most people in my circumstances would have similar or often times worse reactions but that my adverse responses were few and far between.

I remember reading in a book about an exmarine who became a bilateral AK amputee as a result of a land mine. He explained in his book that his anger was so great intially he used throw his prosthetic legs across the room and at the wall.

Observing my reactions and being aware of  what circumstances prevoke negative ones, may help me with future outbursts. If that doesn't work, I have to realize that those feelings of fear,anger, frustration and disappointment are normal and even expected given my situation.

I have to give myself permission to be a human being......we all do.