We need to talk. We need to have a serious discussion about health: more specifically, health care of the preventive kind. This is an important conversation, as it is one that affects us and our loved ones.

It is a basic human instinct to put off until tomorrow what we find distasteful or difficult today. Some of us are so good at it that we can put off or postpone for years those things that we do not like. I can attest to that, through personal experience, as I am my own worst example.

In an earlier blog I discussed the years when I was invincible, prior to my disabling spinal cord injury in 1988. Healthy living, physical fitness and a lot of luck meant that I only saw doctors a few times to stitch something up or make sure I had done no permanent damage with a sports-related concussion. During my 23-year railroad career, the only physical examination I had was my preemployment physical.

Even after my spinal cord injury, it has been far easier to deal only with the most pressing physical issues instead of getting overall checkups. Since my doctor visits have usually been scheduled to deal with specific ailments, the only additional measurements taken that might indicate some other types of problems were my blood pressure, temperature and pulse. Those simple tests did not reveal any significant problems, so I went about my life without changing habits or worrying about some of the other minor indications that things might not be quite right when it came to my health.

It is pretty easy to ignore the little things even though you fear what they might be indicators of regarding your health. The truth is that there is nothing to be gained by ignoring them. Can frequent, or even periodic, headaches or dizziness be an indicator of a brain tumor, aneurysm or something else that might be just as sinister? Could frequent awakening during the night, or still being exhausted after getting up in the morning, be a sign of sleep apnea?

How about that continuing series of urinary tract infections that have been treated with every type of antibiotic available to modern medicine? Could they be a harbinger of bladder cancer or perhaps renal failure in the future? What happens when the germs in our system become resistant to even the most powerful antibiotics?

There are even more things that should concern us and prompt us to have a conversation with a medical professional. That periodic tingling or numbness of our lips or one side of our face might be a sign of a blood vessel becoming blocked, or an indicator of high blood pressure that might lead to a stroke.

The rare but frightening spots of blood that have shown up in the toilet periodically could be a symptom of five or six different maladies of minor to major concern. All require a look at our innards by someone who specializes in whatever can go wrong with such private parts. Unusual changes in spasticity, flexibility or our capabilities for self-care might merit a discussion with a physiatrist, neurologist or others who specialize in our particular type of disability.

Changes in hearing or vision, especially if they occur relatively quickly, are a sign that some medical attention is needed. A skilled optometrist or ophthalmologist can detect early onset of glaucoma or cataracts, and might be able to spot indicators of more serious issues taking place in other parts of the body.

Some of those items get more common as we age, or if we have close relatives who have had certain diseases or complications related to the above. When you add in the additional indicators that might be unique to spinal cord injury or disease, or similar paralyzing disabilities, the signals being sent by our bodies can become even more complex.

Several of the aforementioned items have been a part of my life, and seem to be occurring more frequently recently. I found that the menu of medications that I was ingesting each day, when I included those that were recommended by well-meaning friends and could be purchased over-the-counter, had risen to over 25 types of pills. It was only recently that my primary care physician was able to start reducing the list through continuing discussions with me concerning how I was feeling, and coupling those discussions with blood tests to see how those changes were affecting me.

Yes, it’s human nature to procrastinate, especially if we can convince ourselves that some signal our body is sending doesn’t warrant review by a doctor. I don’t know about you, but I think it’s better to heed those signals than to try to explain to my family why I continued to ignore such warning signs.

© 2012 Michael Collins

Taking my own advice as recommended in my last two blogs, I have submitted the following to the Department of Justice at the regulations.gov website. I hope you are all taking similar action.

Testimony to DOJ NPRM re Enforcement of ADA Pool Lift Requirements
Submitted by Michael C. Collins
April 3, 2012

Enforce all aspects of the Americans with Disabilities Act:  this is not a new regulation, as a requirement to have pool lifts or other types of access available for public pools has been a key component of the law since passage of the ADA in 1990. The failure of some hotels to accomplish that installation has resulted in very few penalties. This requirement is not unduly burdensome, and the availability of swimming pools and spas is considered a primary attraction for patrons or guests at many types of public accommodations.

People with disabilities should not be relegated to sitting poolside, watching their families and friends enjoy the water. Those in the lodging industry who complained to Congress have likely failed to comply with existing regulations for 20 years, so apparently they feel it is important to set aside a standard that provides the necessary accessibility to features that are enjoyed by the rest of American society. I feel that a survey of the “hospitality” industry would reveal that only a small percentage of pool owners have bothered to provide any type of pool lifts for the use of their patrons who need them due to disability.

This is a disturbing situation, as the argument used to stop enforcement of that portion of the law is a flimsy one at best. Any public accommodation that could not accomplish the work due to financial hardship has always had a means of avoiding fines that might have been levied for not improving access. There was even a ‘safe harbor’ granted when these new regulations were posted, allowing those with pool lifts already installed per the 1991 ADAAG to postpone improvements for the time being.

The significance of this latest action cannot be ignored. The ADA is the major civil rights bill for people with disabilities, and was originally passed by Congress only after years of planning to assure that it would accomplish its goal of improving access to our society without unduly burdening anyone. Provisions of the ADA that required architectural improvements were phased in over time, with liberal tax credits and deductions allowed for those businesses that made improvements as the law required. Changes that were architecturally infeasible or that caused financial hardship did not even have to be made.

Excusing the violation of any civil rights law is unprecedented, and suspending the enforcement of ADA regulations for the benefit of the prosperous hospitality industry is unconscionable.

Congress has begun to whittle away at our civil rights as established by the ADA almost 22 years ago. It sets a dangerous precedent.

Which other sections of the law will be targeted next? Will it be in the areas of public rights of way, which include the sidewalks and curb ramps we depend upon for wheelchair access to our communities? Will it mean that hotels with insufficient wheelchair accessible rooms or roll-in showers will lobby to strike those provisions of the law? Could businesses that fail to maintain proper accessible parking spaces plead for removal of parking requirements in order to gain back the spaces that became our access aisles? All of these items covered by the ADA have been the subject of DOJ enforcement action in the past, as well as provisions that provide us access to employment, government services, kiosks, websites and interpreters for those who need them.

Disability civil rights are critical to our enjoyment of and access to our society. Lessening or eliminating similar civil rights would not be acceptable to other protected groups, whether for race, religion or gender. This proposed action is not acceptable to us. Do NOT stop enforcing any part of the ADA or it’s related regulations.

© 2012 Michael Collins

Recounting my early years, it amazes me that my circle of friends survived to adulthood, especially absent major traumas. We didn’t consider strains, sprains, concussions and fractures to be major injuries, as we healed from those in time. We even jumped or dove off towering cliffs into murky lakes during our teen years, but none of us drowned or became paralyzed. Read More

It sometimes amazes me how easy it is to kick off a cascade of memories. One random thought leads to another, and soon they keep coming. It almost seems like they've been standing there, like dominoes, waiting for someone to knock the first one over. Read More

The Department of Justice(DOJ) has just published some updates to the Americans with Disabilities Act (ADA) regulations. One of the bigger changes concerns the definition of “service animals.” That category had been expanded over the years to include many types of exotic animals that played roles that were difficult for outsiders to understand but it has now been narrowed. Read More

The life of a retiree has many challenges. There are several basic questions that need to be answered every day. One of the most important is one that many younger people don't even need to ponder, as commuting patterns and the needs of their employers dictate their schedule: What time do I want to get up in the morning—or later? Another is related to that first decision: Do I want my first meal to be breakfast, brunch or lunch?

Once those first two challenges are handled, some decisions need to be made about wardrobe. Will I be seeing anyone today who saw me yesterday, or can I get by with wearing the same clothes again for the third time?

Do sweatpants need to match my shirt in order to be acceptable for wearing to the coffee shop or grocery store? I see many younger people wearing what appear to be pajama bottoms in public, but since mine don't have a zip-up fly should I be wearing them out and about? Probably not.

What about slippers? Definitely okay virtually anywhere.

Television plays a big role in my life now. When I was young we used to make fun of housewives or retirees who sat home watching television all day, as their selections were comprised mainly of soap operas. We knew those types of programs had the ability to stunt our intellect, so pledged that we would never choose to do that when we got older. That has changed.

Thanks to the wonders of cable television or satellite dishes, most of us now have over 150 channels to choose from. We can still find soap operas, or even the shows that entertained us when we were young, on network TV or the nostalgia channels. If we want education, anything from training our dogs and cooking a roast to building a house or motorcycle, it is likely to be immediately available. We are able to learn about everything that has happened in our history, from the birth of the planet to details about every war fought by mankind. There is also television designed to educate and entertain those whose beliefs may not be grounded in history.

Programming today includes such delicacies as the search for Bigfoot and the Loch Ness monster. We can hear directly from those who have been visited by, or even examined by, extraterrestrial beings. Theories about the beginnings of the universe are backed up by detailed photographs from telescopes and satellites. More importantly, we are told to get our lives in order because this all may end some day.

When I was a child I heard about Chicken Little, and have learned to ignore similar dire warnings that were not based on fact. Those prophecies are a little harder to ignore when they come one after the other from some guy named NostrilDominoes who lived 500 years ago but knew everything that would happen to us through the centuries. Since I am not spending my time working for someone else, I have plenty of opportunity to consider the repercussions and have begun to plan ahead for what Mr. NostrilDominoes predicts will be our future.

In order to plan appropriately, it is important to pick a date. Obviously the Mayans, Aztecs and Hopi Indians could not be wrong, as they joined with Mr. NostrilDominoes in selecting December 2012 for Armageddon. The definition of that word is “the end of the world as we know it.” If that time estimate is good enough for them, I will key on that as the basis for my decisions. 2012 will thus be an interesting year for me.

Starting in January 2012 I will forego visits to my dentist, will let my beard and remaining hair grow wild and will begin to eat whatever I darn well please. After all, at some time in December it won't matter if I have cavities or high cholesterol anyway. In about May of that year I will stop making house payments. With the backlog in foreclosures that exists today, I doubt if the bank would be able to get me evicted by December so I will still have a place to live. The same holds true for car payments, although I know that utilities and cable television can be shut off far more easily so I will continue paying those bills.

I have prepared a will, and have planned to leave all of my belongings and meager savings to my daughters. Since 2012 will apparently be the last year for all of us, there should be no need to leave them an inheritance so I will plan a few more trips to Las Vegas and Hawaii in order to spend down as much of my savings as possible before December.

There may be a flaw in this plan though, as I realize that when my patterns change in January of 2012 it won't take long for my daughters to recognize it and have me institutionalized. Worse yet, they could have me placed in a dreaded nursing home before I can implement the rest of my plan. So much for enjoying my year of Armageddon.

© 2011 Michael Collins

by Michael Collins

Anniversaries can serve a variety of purposes. They can commemorate the start of a married life together. Anniversaries can also be a reminder of a subsequent divorce, the birth of a long-dead president, the number of years since an election or the beginning or end of a war. We celebrate the anniversaries of graduating from high school or college by holding reunions, and our anniversary of starting a job might be the occasion for a well-deserved promotion or increase in pay.

For many of us who entered the world of paralysis through some type of injury, our anniversaries of that date may not seem like an occasion to celebrate, but I contend that we should look back upon that date as something special. Today marks my 23rd anniversary. On this date I was hurtling down a race course in the mountains of Idaho when a fall, a fairly simple one, changed my life forever. In less time than it took to type one word in this sentence, I went from a committed weekend athlete to someone who was fighting for every breath and unable to extricate myself from the grip of the netting that had me wrapped around the base of a ski lift tower.

The days that follow major injuries are often shrouded or vague memories. Whether kept sedated through the miracle drugs that are administered to keep us alive or spared the realities through our body's reaction to the shock, there is usually a timeframe when we are not forced to deal with what lies ahead. After all, the human body is a wondrous machine that can heal itself, or at least be healed, as we have learned through a history of sports injuries or exposure to “miracle” stories on daytime television. This feeling of helplessness will only be temporary, or at least we tell ourselves that. I know that was the situation for me, as it took weeks or months before I was finally able to fully accept the reality that was my new life.

During those first few weeks one of my frequent requests was to meet someone older who was also quadriplegic, in order to refute the dire predictions about the shortened lifespans of those of us who are spinal cord injured. Since then I have met many such people, and am proud to say that I am now one of them myself.

Why in the world would somebody want to commemorate a day that had such a seemingly negative impact on one's life? Once again, I can only speak to my own situation. That date, and the months and years that have followed, literally served as a rebirth into a world that was the polar opposite of my first four decades.

I have been fortunate to meet many dedicated medical professionals, from nursing assistants to neurosurgeons, whose primary responsibility was to keep me alive and healthy. In the rehabilitation ward, strong bonds were formed between those of us who were struggling to regain as much function as possible before being turned loose upon the world that awaited us outside the sheltering walls of the hospital. We prodded each other during rigorous exercise sessions using weights that a kindergartner could handle, and applauded when one of us attained a victory such as regaining a function that had appeared to be lost. Such shared experiences form very strong bonds.

The date of my injury also marked the start of the period when many friendships, and my own understanding of the meaning of quality of life, would change. Some of those old friends who had been part of a relationship based only on our mutual interest in a particular sport, or through the accident of being neighbors, drifted slowly away. Former coworkers did the same, although new ones waited for me on the horizon along with the jobs that would sustain me during my disability working career.

Thankfully family is always there, even if hundreds or thousands of miles separate us at times. My family helped me celebrate my 20th anniversary by throwing me a party, replete with black balloons, humorous cards and much laughter. This year’s anniversary provided a unique opportunity; I was the judge for a break-dancing contest where the contestants were my three grandsons.

While some may think this statement is a little ridiculous, I actually think that the quality of my life has increased since my injury. We have always been advised to slow down and smell the roses, but traveling in a wheelchair and relying on others for assistance to do many of the activities we once took for granted results in a forced slowdown. It is no longer possible to rush through an airport, and every trip to the supermarket results in conversations with a series of willing strangers who hand us down items from the top shelves or hold open doors when the pushbuttons fail. I probably say “thank you” more times in a month than I did during 10 years of my earlier life. That is not a bad thing, as each time I do it signifies a positive interaction between two people.

The quality of my life has also been enriched by friendships and opportunities to interact with other individuals with all types of disabilities who have dedicated their own lives to improving the lives of the rest of us. I have been fortunate to meet or work with the visionaries who founded the independent living movement, and those who took extraordinary steps to ensure the passage of the disability civil rights laws that we all rely on for our own quality of life today. I've even had opportunities to testify to Congress about the Americans with Disabilities Act, and to state legislatures about the need for enhanced accessibility in all aspects of our lives.

The other thing that makes me think that I have a good quality of life is the friendships I've been able to make with the future generations of young people with disabilities who have already become strong advocates and leaders in their own right. I know that the challenges we all face will be the focus of those young leaders and that through their efforts my own quality of life will continue to be protected, and perhaps even enhanced, long after the time that my peers and I have retired from the ring to leave the fighting to others.

Even though I should do it more often, I probably would not have reflected upon all of the above unless this was my anniversary. I'm glad that I am able to enjoy it, and am looking forward to celebrating many more. I hope that whatever anniversaries you celebrate are as enjoyable as mine.

© 2011 Michael Collins

World’s Best Grandpa?
by RoboDad

It has been almost 23 years since I lost my ability to walk after a spinal cord injury. In the last decade, some things have changed. My two daughters have grown up, married, and blessed me with three grandsons. I know that they didn't have those grandsons for me, but the impact is the same.

My daughters re-named me RoboDad. After my injury, I reverted to utilizing wheels to get around, and many other useful adaptations to accomplish the necessary activities of daily living. I didn’t realize at the time that those adaptations would one day allow me to claim the title of “the best grandpa” in the eyes of my three grandsons.

There is a lot of competition for that title, even in our small family. Because of our society's propensity to divorce, my grandsons now have three grandfathers and three grandmothers. However, none of the others can offer the attributes I bring to a grandfather/grandson relationship.

Young boys are fascinated by wheels, and my life revolves around wheels. Wheelchairs lower me to a kid-friendly height, so I do not need to stoop for an eye to eye conversation. We can hold hands while walking together because it only takes me one hand to steer, and there is always some spare wheelchair around for them to play with--even without me present.

Touring museums, visiting the zoo or walking through the mall can be tiring, especially for a child with short legs. Riding with me in my wheelchair van makes that walk from the accessible parking spaces to the door of the theater, mall or stadium much shorter as well. As the first body to be loaded on an airplane, my young boarding party benefits from that early access as well. However, they don’t appreciated being the last ones off the plane any more than I do.

As RoboDad, I can provide a benefit that those other grandparents can't: lap rides. Besides taking a load off tired little feet, it provides the added benefit of allowing previously unreachable objects to become reachable.

The power wheelchair that allows me to roll alongside sprinting grandsons is not the only treat that RoboDad can provide. The many switches and remote controls that operate everything from wheelchair accessories to the lift on my van are objects that fascinate my grandsons. They have learned to pick up objects with my reachers, and are begging me for rides on the new lift that hangs from my bedroom ceiling.

Video games are very popular today, but it has been just as much fun to have three grandsons standing beside me as I demonstrate the capabilities of NaturallySpeaking™ for them. I compose stories that use their names, and they even tell me what to write. Because of this exposure, I am a bit worried that the next generation will lose the ability to type, as everything they do will be voice-activated.

Being the most popular grandfather comes with some responsibilities as well. I’m used to answering questions from curious kids as I roll through the community. Was it Art Linkletter who said “Kids ask the darnedest things” or something similar? I always answer their questions, despite their mothers trying to drag them away. They deserve those answers.

Because I believe in keeping younger generations informed about what might lie ahead, I recently (and gladly) accepted the invitation to attend my grandson’s school as his “show and tell” for the week. The other preschoolers were fascinated by my demonstration of tilt and recline, as well as my ability to spin in place with the flick of a wrist. We all learned that a couple of other students also had grandparents who used wheelchairs—but not as cool as mine, of course. After a lively question and answer period, the entire class followed me to the parking lot for a demonstration of the wheelchair lift and me locking into place to drive away. My grandson insisted on holding my hand on the way to the van, which made the experience even better for me. I have promised to do the same for my other grandsons when school starts again.

Any grandparent can provide a kitchen drawer full of snacks, a swing set in the backyard, and a chest full of favorite toys in the family room. Only RoboDad can go beyond that level by providing access to the unique accessories and activities offered by life in a wheelchair. I rest my case.

© 2010 Michael Collins