RIDING REASONS

I took my handcycle to the shop for repairs last week, and I was mesmerized by all the medical equipment that they had in storage. I guess a lot of people took their wheelchairs and handcycles to the shop last year, but haven't been able to pay their repair bill. The shop owner told me that a lot of the equipment has simply been abandoned. I explained to him that I used to be a medical equipment broker before my paralyzing accident and that I could find new homes for the handcycles (and maybe the wheelchairs). He said fine. I'm going to start with a local paralysis meeting group that I used to attend after I had my accident. I think that many of the younger people would be interested in buying a handcycle. I think it will provide great inspiration and hope in their lives.

So you think to yourself, "When are you going to enter your first handcycling race, Frankie?" Well, I'll tell you. Racing hasn't been my main focus lately. I'm just thankful that I don't feel confined to static complacency, anymore. I used to hate how my paralysis made me feel that I was also making Judy static, keeping her at home beside my wheelchair, but now I've found new ways of enjoying life and being outdoors with my family. Judy now accompanies me in the mornings and jogs beside my cycle. Hope also accompanies us sometimes in her mini-bicycle. Is there a better reason to ride?

BACK ON TRACK

I’ve been back on my wheelchair racing practice routine, and it feels great. I can feel myself breathing better and stronger everyday. My times have not improved much since my last post, because I’ve been working on my endurance for long distances, but I feel that it’s going to make me a better athlete. Judy, Hope and I have been going to the beach where they have a sidewalk that goes on for miles. They sit on the beach and walk around the shops while I go off on my practice routine. Every once in awhile, I’ll pass another handcycler and smile – I can truly say that I know what there thinking when they pass by...you would also, if you were in my situation.

I’m sure you’ve noticed (if you’ve been reading my blog updates) that paralysis is not just a physical condition, it’s a complete state of mind. I always feel confused about my life and what I can give to the world as a paraplegic. We really all just have to stop being so demanding of ourselves. Do you think that people who can walk are confused about life and their own worthiness? Of course they are, but when you are paralyzed, you have a lot more time and solitude to think about it.

If it wasn’t for my family, I don’t even think I would have started this blog. It’s only because of their love and dedication that I even had the desire to share my life on the Internet and hopefully help others in my situation. I know I usually end my posts mentioning the power of love, and I will continue to do so. I can only hope that most of you know how it feels.

HOPE

Judy and I have been spending much more family time together with Hope. I've only been practicing my wheelchair racing twice a week lately - I do believe that my motivation (obsession) is subsiding. I got a play-nurse kit for Hope, and she loves it. When she's playing, she comes over to me in her nurse outfit and asks me if I need anything (in her adorable broken english). I play along and ask her for a snack. She always brings me the processed fruit snacks that she loves so much, even though I don't always eat them.

Hope is also asking me a lot of questions about my paralysis and why I am in a wheelchair. I am very honest with her these days when explaining my accident, because I want her to know how fragile the body really is. Whenever we see another person in a wheelchair at the mall or store, she always goes up to them and says hello. The person will just look at me and usually smile when he or she sees that I am also a paraplegic. I really do hope she becomes a nurse, not only because it is a great job, but because I would love to have her look over me when I am older.

Like I've said before, "The greatest thing we'll ever learn is just to love and be loved in return."

BREAK TIME

I've been taking it a little easier with my handcycle practice routines because I realize that I have been neglecting Judy and Hope. The other day, Hope fell down our staircase while I was out working on my racing times. She is fine, but I felt really bad, because I barely watch after her anymore. I realize that I've been trying to overcome my inability to walk through my wheelchair racing. It's as if I can see myself being accepted as normal by the people around me if I excel in some sports activity. What I overlook is that they already accept me and my paralysis - I'm the one who need to accept myself.

Hope is now getting ready for school, and I expect her to need guidance and encouragement while she prepares to go through the school system. With all the knowledge I've attained in my life, this may be the greatest race I will ever be a part of. I have already begun sitting down with Hope at night and reading to her (something I hadn't done since she was a baby). I can see that she really appreciates my time with her. She points at the pictures in the books I read to her, and I tell her the name of the object she's pointing to. She then repeats the word until she gets it right. This happens every time we open one of her children's books. I can tell that she is very excited about growing up. I don't want to miss her childhood years by obsessing over my inability to walk. Hope can walk just fine, and she will walk for me where my footsteps ended.

The greatest victory of my life may not be in finishing Sadler’s Alaska Challenge, but in seeing my baby girl achieve her life's dream. Even at her young age, she insists that she wants to be a nurse. I cannot think of a better contribution to my world than helping her win that race.

A HELLO TO ARMS!

Well, you should see my arms now! Judy has been saying that they look bigger and stronger due to my daily handcycling practice. I haven't been using my electric wheelchair, because I want to keep building strength in them. Whenever I am out in my manual wheelchair these days, I can't help but try to out run Judy and Hope. Hope loves it! She starts to yell, "Wait Daddy, wait Daddy," and runs after me. I can see Judy just nodding her head and smiling, "alright, come on you two!" We have a blast! Hope is starting to get interested in my handcycling and even tries to sit in my wheelchair to play along. "Look, Daddy!" is all I hear. I do wheelies in my manual wheelchair to amuse her, and she always laughs. She is my angel.

I recently bought a new battery powered tire pump, and it's a great convenience. I also got some carbon fiber tires, and they usually cost $1500 new, but I was lucky and found some used ones for $450. I also got some special racing gloves which really relieve the strain on my hands. I used to sell medical equipment for living, and I always know where to look for the best prices.

I've been averaging 9 mph in my 100 meter practice runs, but I have learned that it isn't the strongest person who wins a race, it is the person who last the longest. Racing wheelchairs is an long endurance contest. You may not be the strongest or fastest person on the race course, but if you can keep pushing it for long periods, you may just find yourself in first place. This is what I am going to practice next. I will be doing 1 mile courses around my neighborhood (there's a golf course walking trail that's perfect.) I can't wait to be ready to start racing.

SMILING MEDICAL EQUIPMENT?

I can see that Judy is feeling neglected by my handcycling lately, but I also notice that she refrains from any criticism. She usually just sighs and smiles...the same smile that made me fall in love with her when I first met her. She is truly a great woman.

In her teens, Judy told me that she used to do minor volunteer work at her local hospital where her mom was a nurse. She told me how all the hospital equipment intimidated her at first, and that she had nightmares of all the scooters and electric wheelchairs coming to life and following her in these dreams. With time, after seeing see how much the equipment helped the patients, she said that she started seeing these disability aids as smiling characters in some (bizarre) musical in her head. I used to lower my eyebrows and smirk when she told me this...before my accident. After my paralyzing accident, I now realize what she meant. My handcycle seems to be smiling at me lately...all the time. How can a piece of medical equipment smile at you? I guess you'd have to be in my seat to see that for yourself.

Ok, back to handcycling! There is a seven-day race in Alaska that will take place in July 19-27, 2009. You can find more information at http://www.sadlersakchallenge.org. For a few days, I played with the idea of signing up, but I still need some serious practice. It's a very long race! Let me know if any of you have signed up for this event. I'd love to hear about your practice routines. Thanks!

NEED TO GO FASTER!

My racing times are definitely improving! Josh George won the gold medal in the men’s 100-meter T53 final in the Beijing Paralympics last month, and I've been following his training methods closely. I've learned that you can’t determine who the fastest wheelchair racer is in 100 meters, as Josh has stated. Most wheelchair racers reach max speed by the end of the race. If a race extends an additional 10 meters, Josh has mentioned that he usually accelerate 1 mile an hour faster during those last moments. These are things to keep in mind. Yes, I know, my goals are high, and I don't plan on being in the Paralympics, but I am modeling myself after the best so I can win locally.

And now a bit of handcycling history...

Handcycling was developed in the 1980s by people attempting to create alternate types of human-powered vehicles. It was almost by accident that a new world of cycling was opened to people with disabilities. In the 25 years since its development, handcycling has continued to grow in popularity. It’s been part of the IPC cycling program since 1998, and the 2004 Paralympics included handcycling racing for the first time. Today, thousands of people with disabilities have turned to handcycling as a means to improve their cardiovascular health, increase upper-body strength and compete.

Types of handcycles...

An upright handcycle is an entry-level bike for those who are new to the sport, who just want exercise or recreation, or who don’t want to ride very long distances or go very fast. Because of their higher center of gravity, upright handcycles aren’t suitable for speeds higher than 15 mph.

A recumbent handcycle, borrowed from the cycling industry, usually come in a choice of three or seven speeds, which naturally limits the speed to less than 15 mph. They are easy to transfer in and out of from a wheelchair, and have a natural, fork-type steering system. Recumbent handcycles come in different variations. There are two steering options: fork-steer and lean-to-steer, and two seating options: one where the rider reclines and the other, a “trunk-power” version, where the rider leans forward. They usually come with 27-gear drivetrains, although they can be purchased with three- or seven-gear drivetrains.

The trunk-power handcycle doesn’t have much of a seatback. The cranks are low to the ground and far away from the rider. With these arrangements, riders are able to put the weight of their trunks behind each stroke, allowing them to go faster for longer. The limitation to this type of handcycle is that the athlete must have control of most or all of his abdominal muscles, so it may not be suitable for all potential athletes.

A lean-to-steer handcycle has a two-piece frame where the top frame swivels over the bottom frame. The front wheel turns along with the seat. The rider makes the turn by leaning his whole body. There's a bit of a learning curve with these type of handcycles, but many riders prefer them because they have a feel similar to monoskiing. They’re used primarily by people with lower-level disabilities.

There are also handcycles for the young and those with shorter legs. Invacare manufactures one with a lower center of gravity. It has adjustable footrests to accommodate a growing child. New handcycles can range in price from $1,500 to $4,000, although you may be able to find deals on a used models. Some of the major manufacturers include Invacare, Lightning, Sunrise Medical, Schmicking and Freedom Ryder .

Yes, I know I'm getting a little obsessed with my potential abilities in handcycling, but I will quote Disabled Sports USA by saying, "If I can do this, I can do anything!"

PROGRESS

My Excelerator XLT Handcycle arrived last week, and I have been practicing quite a bit since then. Judy has been very helpful and supportive. I can hear her shouts of support as she helps me try to improve my speed and race times. I haven't wanted Hope to be at our practice sessions, because I really want this to be a surprise for her. She's seen the Handcycle and other new medical equipment in our garage, but hasn't asked any questions about them yet.

My arms ache as I write this due to my recent wheelchair practice sessions, but they are beginning to get stronger and look much more defined. I also feel that my breathing is improving. I used to be a smoker before my accident, so all this excercise is definitely going to improve my general health and well-being. I'll keep you posted on my progress!

ACTION

I did it! I ordered the Invacare Top End Excelerator XLT Handcycle. The order was place yesterday, so I expect expect the handcycle to arrive in approximately 5 days. I can't believe it. I am going to be a wheelchair racer! I am usually very good when purchasing medical equipment and supplies, because that was my former business, and I got a great price for it.

I've been following the 2008 Summer Paralympic Games which are being held in Beijing, China from September 6 to September 17, and they have been a strong influence on me. Visit http://www.universalsports.com/ for more information on the 2008 Summer Paralympic Games. Judy has been very supportive with my efforts to get started in wheelchair racing, but I really just want to see my daughter's face as I cross the finish line. That vision will come true one day.

UPDATE

Ok, I haven't bought the Invacare Eliminator OSR Manual Racing wheelchair yet, but I will let you know when I do. Invacare also has a Top End Excelerator XLT Handcycle which looks fantastic. Does anyone out there have some suggestions for me regarding wheelchair racing and racing wheelchairs? I'd love to hear about your experiences, and I'll appreciate any input that I receive. Thanks!

On another note, I keep having some serious mood swings even though I've been getting out of the house with Judy and Hope more often. Some days I'll wake up ready for the world (and ready to order my racing wheelchair), but other days I don't even want to get out of bed and deal with my paralysis. Judy continues to be the angel in my life, and she is always very patient with me in my depressive states. I really couldn't have found a better woman to be my wife. Sometimes she reminds me of my mother. The way she looks at me and instantly knows my mood makes me feel like a child again. All I know is that if I had to deal with paralysis by myself, the world would be a much colder place. My mother died right after we adopted Hope, and I feel like Judy has taken her place in my life. Being paralyzed has brought me back to my adolescence, and like all kids, I'm simply confused and impatient about the options in my life.

Sometimes I don't really have anything helpful or meaningful to post on this blog, but I still want to share my feelings with all of you. I hope that I am making those like myself realize that they're not alone.

NEW BEGINNINGS

I bought a new electric wheelchair and a wheelchair lift which will allow me to accompany Judy and Hope when they go shopping. It's a Pride Quantum Rehab Q610 Power Electric Wheelchair with an impressive array of electronics and positioning systems. It also has excellent climbing and transitioning capabilities. I think that part of the reason I have been having doubts about my existence is because I am always home. I thought that it would be easier to hide from the world and live a secluded existence with my family. I was wrong. I see now that secluding myself only magnifies my feelings of helplessness. Earlier today, we went to the mall, and I truly enjoyed myself. I saw some other disabled people in the mall, and most of them smiled at me when we passed each other. It was kind of like they knew that I needed to be accepted by the world once again. Who says that the world is full of bad people? Not me...anymore.

I was just looking into wheelchair racing events online. I have never been a sports enthusiast, but now, it's kind of like I have this desire to push and prove myself physically. I get chills thinking of Judy and Hope at the finish line calling my name, "Come on, Daddy! You can do it!". This vision makes my eyes tear through my smile. I'm going to do it! I will let you know how I do at my first racing event. Invacare has an impressive Eliminator OSR Manual Racing wheelchair which looks like a sports car to me! What is happening to me? I am 43 years-old and I'm getting into sports, now? I think the 2008 Olympics are inspiring me, also. All I can say is look out - I'm coming!

DOUBTS...

Judy and I have been meeting many people (and couples) online who are living with paralysis. Their willingness to share their stories is inspiring, especially when it comes to their relationships with immediate family members. I am now in contact with a man who is living an almost identical existence with his wife and daughter. He said that whenever thoughts of helplessness go through his mind, he is empowered by his responsibility to his daughter and feels that his disability will never get in the way of being strong for her. I sometimes doubt myself in those times.

Now that Hope understands why daddy is in a wheelchair, her behavior has become very cooperative when I tell her to do something. I've noticed that Judy will tell her to do something, only to hear her say "no", but when I tell her to do the same thing, she immediately agrees. I hope she is not beginning to have pity for me because I am in a wheelchair. I don't want her to see me as weaker than her mom in anyway. I guess only time will tell me whether or not she will have that vision of me. For now, I'm just happy to be alive and with them.

I’ll keep learning from others in my situation and see how I can become stronger…

SUPERMAN'S LEGACY

Life with Judy and Hope has been getting richer and richer everyday as I find new meaning in their love for me...and new love for myself. I feel that my daughter, Hope, is beginning to understand my situation - I can see it in her eyes when she comes to me in my wheelchair after accompanying Judy on her errands. Christopher Reeve probably experienced many moments like that with his family.

I started this blog to share my story and life with others who are also living with paralysis. I've received some very supportive comments from people on this blog, and I hope I'm making a difference in my own small way. I have begun looking around for web sites and stories from others who live with paralysis or have loved ones who live with paralysis. I'd like to point attention to the following web sites who have given me much inspiration...

http://www.christopherreeve.org/
http://www.paralysis.org/
http://www.notsorryamhappy.com/
http://www.livingwithparalysis.com/
http://www.apparelyzed.com/

Judy joins me at the computer and we spend time together learning about other's stories. Sometimes, when we're sitting together searching the Web, I feel her love so strongly that I feel that I will fly. I am Superman. Come fly with me, Judy.

HOPE'S PLAYGROUND

This morning, Hope (my daughter) asked me why I never go into the playground with her like mommy does. How do you explain paralysis to a 3 year old girl, especially when you are her father and in a wheelchair? I don't want her to have pity for me - I want to be her hero. I explained that daddy was in an accident, and that my legs have to rest for some time before I can get up and play with her. That immediately broke my heart, because I knew I was never going to be able to live up to what I had just told her. I felt ashamed. I felt like a liar. I felt like a bad father.

I am writing this post to let others learn from my mistake today. I don't feel that we should pretend to be something we're not. If we are bound to a wheelchair and have to live life in this situation, then why are we afraid to have people love us less if we can't walk? Do hospitals lie to a patient's family, even in the worse cases? Usually they don’t. Doctors and nurses don't wander from the truth because they are not personally involved. I remember my doctor explaining my situation to me when I was in the hospital after my accident. I lay there, surrounded by medical equipment which I couldn't even identify (remember that I used to buy and sell medical and hospital equipment for a living up until then), scared to death of what kind of future I had in store for me, and he told me the absolutely truth.

I've been living with that truth every day since I left the hospital, trying to find some meaning with my life as it is. So why did I lie to Hope? There are many things that I can do with her, but I've been too frightened of rejection to start trying. I know now that I have to love and accept myself before I can truly bond with Hope. Yes, I may never be able to run around with her in the playground, or even push her on the swing like I'd like to, but I'm learning that I can be her hero by telling her the truth and trusting her love. That will be our playground.

THE IRONY OF LIFE

Ever since my automobile accident in 2002, I have been living with paralysis. When I was first woke up in the hospital, completely surrounded by medical equipment, and was told that I would probably not walk again, I was devastated. The news hit my wife very strongly, also. We were told that we probably wouldn't be able to have our own children, and I thought that I might lose her. Now I was facing the possibility of life in a wheelchair, alone, without the love of my life. Judy didn't leave me though - it seemed that my accident somehow made our love stronger.

I used to be away, traveling on business all the time, and that was beginning to distance us. I'd come home after being away for approximately a week at a time when I was a medical broker, buying and selling hospital equipment such as hospital beds, wheelchairs, mobility scooters and physical therapy supplies to other countries. Judy would greet me with a kiss and smile, but that kiss was beginning to take on a colder frown every time I got back. In 2004, I started my own online business and now work from home. This has brought my wife and I closer like never before. One year ago, we adopted a baby girl and named her "Hope".

I now rely on medical equipment in a completely different way - I no longer buy and sell it, but I use it to live as normal a life as I can. It seems that my fate was laced with a sense of irony which I could have never predicted. I realize now that I might have destroyed my relationship with Judy, letting my former occupation and non-stop work schedule alienate me from my wife. I now have a new kind of "Hope" in my life that makes me realize why I'm here. To quote a pretty well known song, "The greatest thing you'll ever learn is just to love and be loved in return." I love you Judy and Hope. Thank you for loving me.

I am providing some information below to make others aware of paralysis and the options we have for living with it.


What is paralysis?

Paralysis means the loss of contraction of muscles due to interruption of one or more of the motor pathways that conduct impulses from the brain to the muscle fiber. It results in a complete or partial loss of function of a part of the body, and/or the loss of the ability to move, and/or a state of powerlessness or incapacity to act. It can result in atrophy (a decrease in size or wasting) of the affected muscle mass.


What are the causes of paralysis?

Vascular diseases of the brain exceed all others causes of paralysis in frequency. Some of the underlying causes of vascular diseases are hypertension, diabetes mellitus, hypercholesterolemia, hardening of the arteries, cigarette smoking, obesity, genetic factors, emotional stress, and physical inactivity. Trauma ranks second and other diseases such as brain tumor, brain abscesses, and encephalitis, demyelinative diseases, complications of meningitis, tuberculosis, and syphilis are of decreasing order of importance.


What is meant by plegia?

The word plegia means paralysis. It comes from the Greek word meaning stroke.


What is meant by paresis?

Lesser degrees of paralysis are sometimes spoken of as paresis.


What are the types of paralysis ?

Paraplegia is a paralysis of the lower half of the body with involvement of both legs.

Hemiplegia is a paralysis of half of the body or part of it from injury. It results in loss of strength in arm, leg, and sometimes the face on one side of the body.

Quadriplegia is a paralysis of both arms and both legs.


What can be used at home to help a paralyzed patient?

In the living quarters; hand bars (especially at the tub and toilet), ramps and other aids should also be installed.


What supportive care can be helpful to a paralyzed patient?

Occupational and physical therapy should emphasize using the effected limbs and to help improve walking, mobility, eating, dressing, toilet functions, avoiding bed ulcers and improving other basic needs.

Early treatment, encouragement, and awareness about the patient's environment are important. The patient and his relatives and friends must understand the nature of the disabilities and the likelihood that progress will occur but will take time, patience, and perseverance.
There are many products available for the Paralyzed person, that could help to increase their quality of life and provide more independence, these products may be as valuable to the family or care-giver as to the patient or user.