It’s not a surprise that finding fulfilling hobbies is a challenge for those of us with severe mobility impairments.   This August marks a year since I took the giant leap into the world of digital photography.   I took this leap not only because of my desire to become a well rounded journalist but for a recreational outlet as well.

The most difficult part of this  process was finding suitable  adaptations so I could  operate the camera with as little assistance as possible.  I first started by tackling how I could activate the shutter of the camera when I wanted to take a picture.

I first ordered a remote shutter release from Nikon.  This would have enabled me to push a button to take a picture but it turned out not to be that simple.   My hand strength unfortunately wasn’t enough to make this work.    I then resorted to searching the net for other options and I stumbled across something perfect for my needs.

I found a company in Arizona called Conceptus and they specialize in skydiving photography equipment.   They have a product called the  Bite Switch and it allows the user to activate the shutter by simply biting down.   The owner sent me a complimentary switch and it’s what I’ve used ever since.

Now that my shutter issue was solved, my next step was to find something that I could mount my camera to.   I visited my local camera shop and checked out the professional tripods they had in stock.   Luckily I found one that not only held the camera in a variety of positions but also allowed me to drive my chair up to it.   I was now setup  to begin my work as an amateur photographer.

My total immersion into photography took place last February when I enrolled in a photojournalism class.  This class was great because it taught me the technical skills needed to capture great images.   The class also required us to  get out shooting in the world around us.  The variety of assignments really tested me but the hardest part was walking up to total strangers and asking if I could photograph them.   Most people were gracious and cooperative but a few wanted no part of being on film.

The class ended with a final project where we had to cover a subject in great depth.  My choice was to follow the life of a local glass blower.   I not only covered the entire glass blowing process but I also included his life as a family man.   It was great fun taking pictures of his active boys who were 1 and 6 years old.   The project was quite involved but it helped me secure a B in a very challenging class.

Since taking this class, confidence in my photography has increased and I’ve had a couple opportunities this summer to do some photo shoots.   This fall,  I’ll be taking a multi-media journalism class and this should be a great chance to put my skills to use in a professional setting.   I couldn’t imagine being at this point when I  started this journey one year ago.

I have learned a very valuable lesson in this whole experience.   That lesson is that even though I have a severe disability, it doesn’t mean I can’t push the envelope in what’s possible.   There are so many people that are quite surprised to see me taking pictures and yes I suppose it is a bit of novelty to them.  I just smile and think I’m just glad to be doing what every other photographer does.

Yes, change is inevitable, but that doesn't necessarily mean we always have to like it. My new power wheelchair arrived three weeks ago and I have just now begun to get all the kinks worked out. Let's just say I haven't really enjoyed the transition from old to brand new.  I am never all too enthusiastic when it comes to change. I accept it, but I dread it.  So, why change something that is still doing the job? Well, power wheelchairs take a pounding and have an average life expectancy of about five years if used and abused as often as mine.

Like automobiles, power wheelchairs require general maintenance for a few years before slipping into a downward spiral of breakdown and repair. So Medicare, Medicaid and private insurance companies usually follow the five-year plan for replacing these chairs. It is often more cost effective for them to purchase a brand new chair than to constantly shell out for parts and labor to keep the old one running. Funny, my old chair had a serious breakdown a week before I received the new one.  How long have I had the old chair? Oh, a little over five years. Talk about accuracy!

Besides, bodies and needs will always change. For those of us with contracted, contorted, complex bodies, changing wheelchairs can be a real pain in the ass! This is where a good mobility and seating specialist comes in handy. I met Sam about twenty years and four wheelchairs ago, and he has never let me down. Sam was the guy who evaluated me for my new wheels back in February, determined the correct specifications for me, followed all of the Medicare protocols, did tons of that ridiculous government paperwork, and ordered and delivered the chair to my door. All that was actually the easy part.

Over the past three weeks, however, Sam has really been tried and forced to earn his keep by enduring hours of adjustments to the chair. When a fraction of an inch means the difference between comfort and intense pain, between function and incapacitation, Sam surely had his hands full. Due to my scoliosis, I must be positioned precisely in the chair or I will suffer from pain and discomfort in my legs, hips, back, neck, shoulders and elbows, and dangerous pressure sores will ultimately develop in some of these areas.  Sam had to tinker repeatedly with the padded head, torso, and thigh supports until I was seated properly and therapeutically in the chair. But the greatest challenge was hand and wrist positioning. Sam took on the painstaking task of molding a plastic armrest to make me as independently functional as possible.  No exaggeration, it only took about a hundred adjustments to finally get it right so I could manipulate the tiny, ultra-sensitive joystick to drive the chair! Plus, Sam had to be sure to get me positioned at a precise angle and particular height at my desk for me to be able to use my right hand to work the touchpad for my computer and write with a pen. Patience is definitely one of Sam's best assets.  

Well, I went from hating this wheelchair to absolutely loving it in a few short weeks. I still miss my old ride, and the change was somewhat tortuous, but it so refreshing to cruise around in a shiny new hotrod!  Those of you who have done this certainly know the feeling.

Pat Benatar is not the only one to understand what love truly is. It’s a vicious blood sport in which only the strong survive. At least if you have DMD. I basically stayed on the sidelines waiting for a girl friend to suddenly appear out of nowhere and we'd live happily ever after. It apparently doesn't work like that. Now I need a plan B and have probably a very little time to put it into action.

First I need to actually go outside and meet a nice women who isn't married or into women. Then you have to say hello before they run screaming from the room (or chat room, or other cyber forum). Then you hope the woman actually wants to get to know you and once she gets to know you, likes you. You may even decide you don't want them, even if they like you. Finally, they have to not care that you are funny looking or talk like Darth Vader. Not Empire Strikes Back Vader, but the dying Return of the Jedi Vader who can't breathe and talk at the same time without getting winded. (Example- "Luke… gasp… you were right… gasp… Tell your sister… gasp… you were right.")

Good luck!

I don’t think it would be an exaggeration to say that I would be dead today if not for the CoughAssist Mechanical Insufflator-Exsufflator. The what? OK, let’s just call it the CoughAssist. What is it? Well, it does exactly what it says. It is a mechanical device attached to a mouthpiece or mask which assists people by simulating a natural cough. This is accomplished by gradually forcing air deep into the lungs, then quickly reversing and drawing air back out again.

The concept is simple enough, but the end result is literally life-changing for people with disabilities that weaken their respiratory muscles. Without this device, every single chest cold could potentially lead to hospitalization. I am simply unable to clear my own airways without it. My machine acts as a surrogate for my chest and diaphragm muscles, expelling mucus that could otherwise become a breeding ground for viruses and bacteria.

Unfortunately, many people are still unaware of its existence. I live in a large county, one of the largest in Florida. The hospital I usually go to is probably the largest in the county. Despite this, I often run into respiratory therapists, and even pulmonologists, who either have never heard of the device or never worked with one. One doctor I had actually told me that I was experiencing lung failure, and that a tracheostomy was the only solution. Keep in mind, this was almost 10 years ago, and I have yet to require such an invasive intervention. All I needed was to clear the congestion from my lungs. Thankfully, I found a new doctor. After a couple weeks of frequent nebulizer and CoughAssist treatments, and regular doses of guaifenesin, I was back to normal (normal for me, at least).

What would have happened if I had simply followed the first doctor's advice? According to him, my only recourse was a tracheostomy and 24 hour ventilation support. Not only did he advise me wrongly, he then went on to describe the horrible quality of life I could expect while on a ventilator. I was told that I most likely would be robbed of my ability to speak, my ability to interact with the world. This didn't make sense to me, because I knew of others at MDA camp and in online forums who were able to speak while on a ventilator. Yet there was a small part of me that wondered if they were just exceptions. The doctor went on to tell me that this was merely the end-stage of the progression of my disease. He told my crying girlfriend and I that we should create a living will and decide whether or not I wanted life support when the time came. I wonder how many people would believe his dark portrayal of life on a ventilator and choose to let their life end when respiratory support became essential?

Of course I now know that he was either woefully ill-informed or a total jackass. As I said, I haven't needed a tracheostomy for the last 10 years or so. It wasn't even until recently that I began using noninvasive volume ventilation (another option that wasn't presented to me) during part of the day. Not only that, but the information he gave me about quality of life and ventilation with the tracheostomy was also factually incorrect. Most of the people on ventilators I have encountered, in person and online, speak quite clearly. Some of them tell me their voice is stronger and clearer than it had been before the operation. With the new generation of compact and portable ventilators, it is also feasible for them to live relatively active lifestyles. They are not all shut-ins or imprisoned in a nursing facility as many of us have been led to believe.

This is why you cannot depend on medical professionals to know exactly what you need in every situation. Many hospitals will not even have a machine like the CoughAssist available to you when you get sick. When I go to the hospital, I bring my own. You must be your own advocate and do your own research. There’s nothing wrong with collecting information on your own, presenting it to your doctor, and requesting a prescription. Don’t let the ignorance of others decide your fate.

It has been three weeks since my bold pacemaker surgery. So what's it like having a device the size of a Silver Dollar implanted into my chest. Actually, I can hardly tell except for a three inch scare that seems to be fading away. The first time I felt the pacemaker working was the week after this procedure in the Device Clinic where they had several computers connected to this odd shaped magnet that was center less and kind of resembles an old eyeglass. I was already stoked about the fact that I was alive and this added to the awe of being checked over by this technician holding the magnet, It was strange seeing the readings on the computer monitors; Everything that my heart does right on the screen. That's the first time in my life that I felt like Frankenstein; but anyhow, I was very relieved to learn that everything with my pacemaker was spot on; they were very pleased with the results.

During the 20 minute diagnostic session, how cool is that, The Pacemaker Guru increased my heart rate enough to let me feel it power up; made that up. Unlike most pacemakers, mine is continuous and if my hearts need more ump, when this happens I will feel a wild sensation in my heart. It was frightening at first when I felt anything from it. It was one day last week when my heart rate dropped to near 40; immediately I felt my heart speeding up and seeing how it was 130 beats per minute, I panicked. It actual felt like it had driven itself up my frontal lobe of my brain. Once I realized I was fine, it became rather amusing like Steven Tyler; my get up and go got up and went. We called my Cardiologist and they are going to bring the high limit down around 95 or else my head might pop off. My next appointment is on June 1, I can't wait :)

Guys, this pacemaker made all the difference for me. It's so nice not feeling my pulse jump around; oh and laying down is a dream. I never felt so relaxed watching my flat screen with my pillows and blanket and my little dog Peppy. I feel so blessed to have been given this wonderful new lease on life. A few months ago we were anticipating planning my funeral, now I don't think I'm going anywhere soon. The important things I once thought aren't so important anymore; the only thing that matters is God, Robin, and my fury little friends. So if you drop by leave a note, I'm out living!

I cannot believe that six whole months have soared by since I was given a new lease on life. A tiny device called an ICD was surgically implanted beneath a patch of muscle tissue in my chest. Since I have this disease known as Duchenne muscular dystrophy, which has been ravaging through my body over the past four full decades, I was surprised that the surgeon could locate more than a few thin strands of muscle in there with which to work. But he did, and now I have a small metal box in my chest that I affectionately refer to as the iFib. This iFib came complete with wires that are connected to my heart. The iFib is both a pacemaker and defibrillator all boxed up in a compact little package. It is about the same size as an iPod Nano, but it can't play music. All it does is guard against sudden death. Let's see an iPod do that!

The pacemaker has been working like a charm, as evidenced by my steady heart rate. I am not sure about the defibrillator, though, as the only way I will ever know for certain whether or not it is functioning properly is if my heart rate ever goes through the roof and I get shocked out of my skin. Trust me, I am not all too eager to find out, but having this thing in my body does give me peace of mind. The iFib may indeed save my life one of these days, and it may very well buy me a few more years.  And that in itself made the surgery worthwhile.

Be it a tracheostomy tube, ventilator, medication or an iFib, you must arm yourself with all of the available ammunition to have a fighting chance against Duchenne muscular dystrophy. Give me the arsenal and I will gladly battle in the trenches, not just for me, but for all others involved in this dirty little war.

Glossopharyngeal breathing, also known as frog breathing or just GPB, is a method of breathing that people with weakened breathing muscles can use without mechanical intervention. Obviously this is no replacement for volume ventilators but it can be used in the event of ventilator failure or accidental disconnect. The technique is not as effective for vent users with a tracheostomy because the air may leak from the stoma but can still have some effect.

GPB works by sucking air into your mouth then using your tongue to push the air trough the voice box while holding your breath. This is repeated in succession until you have taken in a full breath of air. Once you are done pumping in the air you exhale normally. It can be difficult to teach and learn but once you have it down it can offer many benefits.

GPB was first observed with polio patient by a doctor at Rancho Los Amigos Hospital in LA back in the late 1940’s. The patient had inadvertently learned to breathe in this alternate method. The doctor and his colleague decided to teach other patients the technique and it allowed the patients to be out of their “iron lung” respirators for longer periods of time. Strangely enough I also accidentally learned how to do it on my own. Only with me I had already heard about it so I knew what it was.

Competitive free divers have been known to use GPB to over inflate their lungs to allow for longer and deeper dives.

Besides using GPB in an emergency situation it can also be used for other purposes. For example, if I need to produce a cough I can completely fill my lungs to normal vital capacity and produce an effective cough. I know this because I have been tested by my pulmonologist during a pulmonary function test. Also, if I need to call for help I can use it to be heard. Throughout the day I will also use GPB as an exercise to stretch my lungs to keep them elastic. In the mornings before I am in my wheelchair with my vent turned off I use GPB to supplement my non assisted breathing.

To sum it up GPB cannot replace the use of a ventilator for us but in a pinch it can help buy some time until you are reconnected to your vent.

Just a word of caution: I am not completely ventilator dependent so I am able to go without it for short periods of time. Consult with your doctor before attempting to use GPB. Never use GPB to breathe in place of your ventilator if you require 24 hour ventilation.

Hello, Scott Sands here! You may know me from my personal blog, SCOTT SANDS ALIVE, or from Facebook, or Twitter, or e-mail, or this Yahoo group called DMD Pioneers.

Like the rest of my DMD brothers, I am not exactly healthy by any means. In fact, I am the living definition of a physical wreck. Wait, did I say "living"? Indeed, despite everything I have been through with this rotten disease, I have somehow miraculously managed to keep chugging along. I have the wheelchair thing, the scoliosis thing, the dysphagia thing, the macroglossia thing, and the muscle-wasting thing. But wait, there's more! I have a tracheostomy tube jammed in my neck through which I receive a full-time flow of air from a ventilator. I have an ICD (pacemaker/defibrillator) in my chest, and I am a sitting duck just waiting for that device to shock the living daylights out of me at any moment. Yep, my heart isn't exactly in the best condition, but hey, it's still beating, so that's a good thing.

Besides the machines, devices and countless medications that keep this rickety, old, deformed, broken body going, a positive attitude is the key to my being.  I never let this disease keep me down, nor do I allow it to prevent my accomplishments or shatter my dreams. I consider myself a stubborn old bugger who refuses to give up, wane or go down without a fight.  I am 43-years-young going on 44, 45, 46, 47...well, you get the idea. My older brother, Joseph, wasn't as fortunate. He only made it to 15 before DMD claimed his soul. But I vowed many years ago to get enough out of my life for the both of us, and I know he would be proud.

I am a college graduate with a degree in journalism, published writer and amateur photographer. I have an extraordinary zest for life, and I appreciate every minute of every day. Life as a man with Duchenne is short, so I take nothing for granted and push myself to the limits whenever I can. Born and raised in Queens, New York, I now worship the sun in the land of Disney and the giant mouse - Orlando, Florida. If you yearn for more details, add me as a friend on Facebook or check out my blog at www.scottsandsalive.com.

Cheers!

I am happy to report that "Children and Young Adults with Muscular Dystrophy: An Annotated Bibliography" is available on the Muscular Dystrophy Association's website. The Annotated Bibliography is the first bibliography of books by and about persons with muscular dystrophy, according to the MDA. Funding for the annotated bibliography came from a Carnegie-Whitney Award from the American Library Association. Many of the books are about Duchenne muscular dystrophy.

I also have an opinion column, "Why We Need Books about People Like Me", in the Spring 2010 issue of Quest, MDA's national patient magazine. The article introduces the Annotated Bibliography.

Jacob Gapko is a Ph.D. student in library and information studies at the University of Wisconsin-Madison with DMD.