About Me

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For those of you that don't know, I was diagnosed with ALS in March 2007. After two more opinions, the diagnosis was confirmed in the fall 2007 at age 39. This coming August (2010) I will have been married for seven years to an incredible wife, who has supported me throughout. During the course of our marriage we have been lucky to have two wonderful, amazing daughters. Sydney, will be 5 in November. Emily, will turn 2 1/2 in August. Currently, we reside in New Jersey with our Beagle, Trixie.

Tuesday, May 31, 2011

Post 27 - One More for the Road

For those of you unaware, May is ALS Awareness Month. This being the last day of May, I would feel somewhat remiss if I did not get one more post in during the month of May. For me, the month is ending on a particularly good note. On Sunday, we revived the tradition of our annual Memorial Day barbecue. This was a tradition that we started back when we are living in Franklin Park, New Jersey. We have had the BBQ every year we have lived in Chesterfield, except for two. The first year we failed to have the BBQ was in 2007, the year of my initial diagnosis. Since I had received my preliminary diagnosis from the University of Pennsylvania hospital in early May, I was not much in a partying mood, by the time Memorial Day rolled around. The other year, we did not have the barbecue, was last year, because I was simply in no physical condition to host a barbecue, and a little bit saddened by the fact. This year, the idea to have it once again, cropped up in my head somewhere around late April, but since it would have been physically impossible for me to do any of the preparation or work; I kind of let the idea just sit there. A couple of days later, as Tracey drove me to work; she suggested that we revive the tradition. I let Tracey know that I was somewhat thinking of the same idea, but it would have to be her decision since she was obviously going to be doing the majority, if not all the preparation and work. In years past, Tracey would handle the indoor food preparation and cleaning and I would handle the outdoor preparation and cooking, and my favorite part - the beer selection. This year, it would all fall on her. Half of me looked forward to the BBQ, while the other half felt guilty. I knew she was doing this work for me, more so then for her. We agreed that we would keep the invite list small, since we suspected that we might get a fair turn out, due to the ALS pity factor. We also agreed that we would consent to allow people to bring things to help us out. Historically, this has always been a no-no for our parties.

All in all, we had about 30 people show up. Besides the usual family members, we decided to invite friends that have been extremely supportive towards us since my diagnosis. That's not to say that I have not had a tremendous amount of support from a whole host of people, but these were some people that I felt we owed a special "thanks”.   In some ways, this was my coming-out party, in that, it was really my first large-scale, public appearance since the ALS Walk last November in Philadelphia, as well as my first public appearance in front of family and friends, using my power wheelchair (not my good power wheelchair mind you, I'm talking my $200 Craigslist special. I'll save my $20,000 wheels for special occasions). 

That's my new cigar smoking hat, bought specifically for this occasion 

I was not as nervous or hesitant in joining the party as I expected to be. I'm sure that had something to do with being surrounded by people I felt very comfortable with.  Of course, the beer didn't hurt either.  I had five beers that day (I only know that because someone else was doing the counting.  I lost count with my second one) and eight in total, over the three-day weekend. Those eight beers probably matched my previous two months total. In addition, I smoked my first ever cigar. What the hell do I have to lose at this point? I always thought I would look cool smoking a cigar and I was really getting tired of walking around with those pretzel rods in my mouth. I could also tell that most people there must have read my last blog post, especially the part about me needing to gain weight, since almost everyone came up to me, offering to get me some food and making sure that I had something to eat.

Overall, I had a pretty good time, and I'm pretty sure everyone else who attended, did so as well. Again, I can't even begin to put into words how much Tracey amazes me and how wonderful she truly is. From cleaning the house, to doing the shopping, to preparing the food, to cutting the lawn, and finally to setting up the outside and cleaning up afterwards, this barbecue never would've happened, if not for her. A big thank you too, to my brother-in-law Joe, who did all the cooking, my sister Cari who helped Tracey with the cleanup after, and to Yasser for my first cigar. Thank you to everyone who came, brought food and beer and wine and whatever, and helped me to continue celebrating Memorial Day, just as I always have.

Saturday, May 28, 2011

Post 26 - State of the Union

Since this promises to be a slow weekend, (happy Memorial Day weekend to all) I’ll try and slip this post in, since it is not shaping up to be a particularly uplifting one. Consider that your warning. It has been a while since I've given an update on my physical status. My own kind of "can and can't do" list. So without any further ado, here goes nothing.

The good news is that I'm still breathing and swallowing. My arms and legs are still taking the brunt of the disease. It almost feels like I am giving you battle coverage from the front, but I guess in some ways, this is a war. The atrophy in my muscles has become very apparent throughout my body. The most notable area, to me is my neck and shoulders, but it is very obvious in my arms, hands and legs as well. I attached some recent pictures at the bottom of the post, so you can judge for yourself. I estimate that I only have about 5% usage of my left arm and maybe even less of my left hand. There only two ways that I can move my left arm. The first is to swing it back and forth, and kind of fling it where I want it to go. The second way is to grab my left arm or hand with my right hand and move it to where I want it to go. My right arm and hand, although considerably better than my left side, is starting to falter as well. I estimate that I have less than 50% usage of my right arm and hand and I'm starting to fling at arm a little bit more now as well, in order to get it where I want it to go. I can still bend my arm at the elbow, but it is very difficult. I am unable to lift either arm anything more than a shoulder shrug.

My legs, which seemed to have held their strength a little longer, have now caught up to my arms. I am unable to walk without my leg braces more than 5 feet or so, and I can assure you it is not a pretty sight. I look a little like a drunk Frankenstein. Even with the braces on, the maximum distance I could walk, maybe is about 20 or 30 feet before becoming extremely fatigued. Even then, it must be on a flat, smooth surface with no impediments. Because of my leg weakness, I will almost always rely on using my walker. Without the walker I am very unsteady and unbalanced and a danger to fall with each step. The last time I went for an extended walk without my walker, was at work a little more than two weeks ago. I'd walked out of my office to see my secretary, and then decided to continue my walk around the office to stretch my legs. As I was beginning to take a step, the tip of my shoe caught the carpet, and down I went. In ALS terms, this is known as "foot drop," and is often the cause of many an ALS patient falls. Foot drop is basically the dropping of the forefoot due to weakness or paralysis of the muscles down the front of the lower leg. It is characterized by the inability or difficulty in moving the ankle and toes upward. Thankfully, I was able to break the fall with my head and ended up with a little egg above my right eye, in addition to a nasty case of rug burn. When I fell, I also had my right arm caught underneath me, which caused me to land on my elbow and temporarily knocked the wind out of me, in addition to bruising my elbow. I also banged up my left knee and ankle... yes, that same ankle. Luckily, there were only about a dozen people in the office at the time, instead of the usual 13 or 14, so it wasn't too embarrassing. This fall earned me a round-trip wheelchair ride to the nurses’ office. I tell you, everyone should be so lucky to work in a place that has a nurse's office.

Since this fall, I have been very tentative to attempt walking without my Walker. Even with the Walker, it feels as though both my strength and stamina have decreased significantly. I assume that this is both partly mental and physical since each fall does cause me to lose a little bit of confidence but also takes a physical toll on me. At the rate that I am progressing, I would estimate that I would almost be fully wheelchair-bound within the next three months.

There is some good news out of all of this. As I mentioned at the beginning, both my breathing and swallowing appeared to be normal, although I have begun to experience shortness of breath with almost all physical activity. Also, I believe I have detected some slight slurring of words, although nobody else has or will confirm that. Even though people may not be able to hear it, I know I am starting to struggle with saying certain words. It is therefore something I'll have to keep an eye on.

Over the past several years, my weight has remained somewhat consistent. Over the last six months, however, I have lost 11 pounds. That may not seem like a lot, but when you think about it, it has obviously not been through exercise. Weight has always been something my clinical team is concerned about, and they have always encouraged me to try and keep my weight up. A recent study of over 400 ALS patients conducted at Massachusetts General Hospital (MGH) found that those who were mildly obese survived longer than patients who were normal weight, underweight or even overweight. "We have long known that being underweight shortens survival for ALS patients, and several studies in an animal model have shown that weight gain is associated with increased survival," says Anne-Marie Wills, MD, MPH, of the MGH Neurology Clinical Trials Unit, senior author of the report. "Our study was designed to investigate how cholesterol levels affect survival. We were surprised to find that body mass index or BMI – a measure of weight adjusted for height – made a large difference in survival. Patients with a BMI of 30 to 35, who would be considered mildly clinically obese, lived the longest; and patients who were overweight, with a BMI of 25 to 30, lived the second longest." For better or for worse, my current BMI places me in the "overweight" category. I guess I have some eating to do. This is also why my clinical team at the University of Pennsylvania hospital has been urging me to quit my job for the last three years and just sit on my couch and eat potato chips and drink milkshakes.

My Functional Vital Capacity (FVC), which is a measure of my ability to breathe, was slightly down at my last clinic visit, although it was still well within normal range. According to my neurologist and the pulmonary specialist, the drop in score was insignificant. Insignificant to them, of course, because they don't have ALS. As my stomach muscles weaken, which is evident by the fact that I can no longer do certain things, it is expected that my breathing will become more difficult. Typically, the first sign of breathing distress usually occurs at night while you are laying down. Luckily for me, this has not been a problem and my FVC score while lying down is almost identical to my score in a seated position, which is unusual, even for a healthy person.

Several things that I am unable to do at this point, that I was able to do 3 to 6 months ago, includes: sitting up in bed, getting out of bed, getting up from a seated position, showering, getting dressed, brushing my teeth, shaving, drinking without a straw and driving. It has now been almost 6 weeks since I had last driven a car. Not that I still couldn't, but it would probably require me to expend a lot of physical energy to do so. Besides, I would be unable to get up out of the car without assistance, and even if I could, I would be so thoroughly exhausted, that I would probably take one or two steps and then be on the ground. Therefore, Tracey has been driving me to work every morning, and picking me up almost every afternoon. Several coworkers have graciously provided me with a ride home on occasion.

I can still hold a pen to scribble something that kind of looks like my signature, but I have to do this with my right hand. Other than that, I am unable to write. Typing on the computer is also extremely difficult. Oddly enough, I am unable to straighten my pinky, index finger and middle finger on my left hand, and they remain in an almost perpetual fist. My pointer finger, however, does what it's supposed to do, in that it points straight out. That finger, I am unable to bend. My thumb is similar to the first three fingers. On my right hand, I pretty much have full use and control of all my fingers, although they lack strength. Go try and figure that one out. After four years, things like this are still mind boggling to me.

Ironically, I am actually feeling very well today. Had I felt the same as I did today, three months ago or even a month ago, I would have told you that I was feeling very poor. I rarely notice a difference from day to day, and occasionally notice a difference week to week. However, I rarely feel as good as I do on any given day, than I did a few months ago. For the most part, I can say that more often than not, my spirits remain up.  As always, you can follow my status anytime by checking out my "PatientsLikeMe" profile on the right.  I typically update my status to coincide with my clinic visit to University of Pennsylvania.  My next scheduled visit is for July 21.

Trying to walk without my braces or Walker.
Dressed up for a night out on the town!

Tuesday, May 24, 2011

Post 25 - "Lucky Man"

I went to see the gypsy the other night, She looked in my palm looked me in the eye
Said you’re a lucky man

Some folks got fortunes some got eyes of blue, What you got will always see you through
You’re a lucky man

-Bruce Springsteen


Lou Gehrig (June 19, 1903 – June 2, 1941)

When Lou Gehrig gave his farewell speech, over 70 years ago, he began "Fans, for the past two weeks you have been reading about the bad break I got. Yet today I consider myself the luckiest man on the face of this earth.” Although I have always felt that I have many reasons to be thankful, (beautiful, healthy children, a wonderful wife, a great family, dedicated, supportive friends, and a good job, just to name a few) I've never had reason to consider myself lucky, especially over the past four years. In fact, as life began to get more difficult in the past few months, it appeared to me, that any luck I may have had was beginning to run out.

The last week was a tough week for me on many fronts. For starters, the constant rain was no big help. Cold weather appears to be my biggest enemy (I can assure you the hot weather is not any friendlier), which was is closely followed by wet, stormy weather. Last Tuesday, I returned to St. Lawrence Rehabilitation Center for my power wheelchair fitting and test drive. This process began over 4 months ago, when I first went for my initial assessment. At that time my walking was becoming more difficult, and I had experienced several falls. I finally agreed to go for the evaluation, after arguing with the occupational and physical therapists at U. Penn Hospital for over a year. When I first walked into the evaluation, the physical therapist looked at me, gritted his teeth and rolled his eyes. He took a deep breath, and went on to explain that he highly doubted that insurance would pay for my power chair, since I was still walking. I could not believe my ears. I finally show up to do this after a year of debates with my clinical team, and now the evaluator is telling me that it is probably a waste of time. Well, after 4 1/2 months and at least two additional requests from the insurance company to my doctor asking for additional information and justifications, the power wheelchair has finally arrived.

Permobil C300
MSRP: $40,000
 Insurance pays: $23,000
My co-pay: $4500

Not bad for a convertible
Most ALS patients that I've come across on various blogs, forums and websites speak of their power chairs as a saving grace. They talk about them fondly, and look forward to getting them. They talk of how much better their life will be when they get one. For me, this has been the day I have been dreading for over four years. When I walked into the therapy room room at St. Lawrence, and saw this brand, spanking new, shiny black chair, with blue trim (I got to pick the color when the chair was ordered last January. I was going to go with the NY Jets green, but they had just lost to the Steelers in the AFC championship game several days earlier , and I was still feeling a little bitter, so NY Rangers blue it was) I almost lost it. I became very down and depressed. Although I tried to put on a good show for Tracey, I think she knew. As I sat in the chair, and the therapist and a representative from the company began adjusting the arms, seat, backrest, etc. I did my best to remind myself that I was not going to let this get me down. In all honesty, I think I did a piss-poor job of trying to remain positive, but I did a much better job than I probably would have gone a couple years ago. I kept coming back to, what were all those people so damn happy about? Deep down, I knew the answers. It would provide me with a greater sense of freedom, allowing me to go more places. It would provide me a greater sense of independence, since I would no longer have to rely on somebody pushing me. And most importantly, it would provide me with a greater sense of security, since I would no longer have to worry about falling. I also knew it would take an additional weight off of Tracey's shoulders for all of those same reasons. Yet, I just did not want to accept it. To me, this was the beginning of the end. I kept trying to tell myself that the battle was not over, and I still had a long way to go. I fought hard to remain positive. I was able to take the chair for a little spin, and we discussed a few more adjustments. After about an hour, it was time to come home, and I still was not feeling any better about it. The chair was going to be delivered on Friday.
For the next few days I gave the chair little thought. When Friday rolled around, I actually began to get a little excited about the chair. All those positive reasons for having chair, which I thought about a few days ago, had started to sink in. My first real experience with the chair occurred this past Saturday. Tracey and I were traveling up to Edison, New Jersey for the Abilities Expo 11. The Abilities Expo is a three day convention, where companies are able to demonstrate their products and services for the disabled community. It was here that I became truly enlightened. As we walked (Tracey walked, I rolled) around the convention floor, I began to realize how lucky I was. I saw dozens and dozens of children in wheelchairs, some as young as two or three years old. All, with smiles on their faces. I saw adults, in their 20s, 40s, 60s and beyond in wheelchairs, some who were obviously in wheelchairs, all of their lives. I saw numerous parents and caregivers, pushing wheelchairs containing children with severe physical and mental disabilities. I felt luckier about myself as the day went on. We met up with our new friend Dana (the ramp lady from Great Adventure) and shared a lot of laughs. Here I am, sitting in a power wheelchair, something I was dreading since the day I received my diagnosis, and I was feeling lucky.

Lou Gehrig's ended his speech that day by stating, “So I close in saying that I may have had a bad break, but I have an awful lot to live for.” I finally have some idea what he was talking about.

Wednesday, May 18, 2011

Living with ALS: One Man's Story

Below is a copy of an online article that is in the latest issue of Men's Health.  If you substitute the word, girl for boy, left arm for right arm, and wife for mother, you will have a very detailed description of my experience with ALS.  I am roughly the same age as the subject in the article and have shared many of the same experiences, thoughts and emotions.  In fact, I see the same neurologist mentioned in the article, Dr. Elman, at the University of Pennsylvania. 

As you read through the article, I have highlighted areas that I have personally experienced to give you an idea of some of the things that I have dealt with.  For those of you that have been following my blog, you may notice some similarity in my initial reaction to diagnosis (Post 20 - Happy Birthversary).

Living with ALS: One Man's Story


When a Man's Body FailsGary Temoyan is a young, fit father of two. A guy just like you, perhaps. Except his body is systematically shutting itself down. Temoyan is one of thousands of young men—soldiers, athletes, cops—who suffer from Lou Gehrig's disease. There is no known cause. There is no treatment. There is no cure. How do you explain that to two little boys?

By Bob DruryGary Temoyan soars above me, dropping from 13,000 feet. The red streaks on his tandem parachute stand out sharply against a bold blue sky. I glance at his parents, my eyes lingering for a moment on his mother. She's craning her neck, her eyes glistening. I've seen Joan Temoyan cry before, but not like this: These are tears of happiness. My gaze wanders next to Temoyan's two young sons, 9-year-old Joey and 6-year-old Tyler. Beaming at their dad's flight, at his momentary escape from his wheelchair. I think of what might have been—for all of them.

It all began rather innocuously for Gary Temoyan. The death sentence, that is.

A winter's day 3 years ago. He'd dismounted from his Highway Patrol motorcycle to write a speeding ticket. A twinge of numbness gripped his right thumb...as if the digit wouldn't cooperate, wouldn't hold the pen. He shook the hand, hard. Just the morning cold, he told himself. He gripped the pen tighter. Wrote the ticket. But still...

Temoyan was so proud of that motorcycle. It validated all the years of cramming for tests, of footing his own bill through the police academy. Afterward he'd applied to nearly every PD in southeast Pennsylvania, even a few across the river in Jersey. And when Lower Merion, at the rump end of the Philadelphia city line, finally called, there was pride in the Temoyan family. Gary was the first to choose a career in law enforcement. And it was all to mount that motorcycle. Even the years of community policing, of pedaling his mountain bike on patrol 10 miles a day, the joy of "going to work to work out," were merely steps toward the "real" bike patrol. When the day arrived, when Lower Merion had two Harley Davidson Road Kings to issue, he was beside himself. "Please-please-please let it be me," he prayed. It was.

He would continue to exercise and work out, of course. He was a buff 37-year-old, handsome in a Steve Carrell kind of way, with a strong Armenian nose and a thick head of wavy black hair, gelled just so. He continued to surf, fish, and wakeboard, to coach and play lacrosse, to ride dirt bikes with his sons. But as much as he enjoyed the rush of the mountain bike duty, the motorcycle patrol was his dream come true. And then it happened again. The thumb. The pen. The clipboard slipping out of his hand in the station house for no apparent reason. It happened until he couldn't ignore it any more. There was no pain, just weakness. Also, it seemed to be spreading through the rest of his right hand. And the twitching in his right arm. What was that?

He saw all the right doctors. The first, his regular physician, pegged it as a pinched nerve, perhaps from that motocross spill he'd taken a few months back while off-roading with Joey. But the doctor sent him to a hand specialist, who ordered an MRI and an electromyogram to measure the electrical impulses of his arm muscles. The tests found nothing unusual. His spine and neck were "perfect." Then, the dreaded words: "Maybe you should see another specialist."

He did. There were more tests. A hematologist did blood work. He had a full-body scan with barium; certain cancers can mimic the symptoms he was presenting, he was told. Temoyan thought about a couple of colleagues who'd battled the Big C. They were back on the job. Not so bad. There's hope. But the tests were negative; it was something else. He noticed the hematologist looking at him strangely as he recommended yet another doctor, a neurologist in Philadelphia. Temoyan stared back at the man and thought, He knows something.

By this time he had difficulty even holding a pen, much less his sidearm, in his right hand. His arm was twitching more often, too. And now there was something, well, off with his right foot. Sometimes it wouldn't cooperate when he told it to take a step. Told it to take a step? Who has to tell their feet to move? The Philadelphia neurologist ran more tests. A week later he called. "Gary, can you come down?"  He went alone. It was better that way. He and his wife were on the rocks again. The neurologist asked him to sit. Told him they'd reviewed the tests and ruled out Parkinson's disease and multiple sclerosis. That's good news, right?

"Tap your foot," the neurologist said.  He tapped his right foot, practically willing his toes to rise from the carpeted floor.  "Can I be frank with you?"  "Shit, absolutely." It was no time for subtleties.

"Have you ever heard of amyotrophic lateral sclerosis?"  Temoyan stared back, a blank expression.

"ALS? Lou Gehrig's disease?"

The walls closed in and Gary Temoyan's world went gray. The neurologist's voice seemed to issue from afar, as if the words were spoken under water: Quit your job. Get your affairs in order. Write a will. "Live what's left of your life the best you can..."

He was numb on the drive home from the downtown Philadelphia hospital. His doctor said 2 to 5 years. How long had it been since his thumb first twitched? How long did he have left? He tried to run the days, the weeks, the months, in his mind. But they were in a jumble. Joey and Tyler's faces floated before him. I'm not going to see them go on their first dates. Go to college. Start a family. His life, their futures, wiped away in a doctor's sentence.

He pulled his car over to the side of the highway. He grabbed the steering wheel with both hands and squeezed it so hard he thought it would crack. Then he wept. Wept and wept. Until, he thought, he had no more tears left. He was wrong.

Indulge me with a brief physical experiment. All you need is a second hand on a timepiece within your line of sight. Now prepare to put this magazine down and remain perfectly still for 90 seconds. Don't flex or twitch a single muscle in your body. Don't turn your head or wiggle a toe or scratch an itch or run your tongue over the roof of your mouth. Don't sniffle or swallow. You may breathe and you may blink. Ready? Go.

And there you have amyotrophic lateral sclerosis. Times infinity.

ALS is a progressive neurodegenerative affliction that, in the simplest terms, attacks and kills specific nerve cells and pathways in the brain and spinal cord. These cells, called motor neurons, are the longest ones in the human body, and carry messages from the brain and spine in order to control all the body's voluntary muscles. When these motor neurons degenerate and finally die in the rapid course of the disease, they take with them our ability to move. Forever.No one knows precisely why this happens; no one knows how to stop it. Roughly 10 percent of ALS sufferers appear to have inherited a triggering gene from a close relative; the other 90 percent of those diagnosed—15 people a day, 5,600 a year, with roughly 30,000 Americans afflicted at any given time with what is medically classified as "sporadic ALS"—run a racial, ethnic, and socioeconomic gamut. Like most diseases, ALS preys predominantly on older people; the average age of onset is 55 for both men and women.

Except, that is, in the case of fit young men—soldiers, athletes—men who, researchers have recently become alarmed to discover, are contracting it with more regularity. Fit young men like Gary Temoyan. It is still too early to account for the causes of this phenomenon, although many organizations and researchers, including the nonprofit ALS Association and various arms of the United States military, are racing to find answers. Do the multiple hits to the head that athletes receive spark an onset? The fertilizers spread over the fields they play on? The vaccines given to soldiers deploying overseas? We do not know. Yet, as one ALS clinician tells me, "Just from anecdotal experience, I think any physician dealing with ALS will tell you that there is some eerie predilection among young men who are physically fit to get this disease. As a general rule, young, male ALS patients tend to be leaner."

Joel Kupersmith, M.D., the chief research and development officer for the U.S. Veterans Administration, has noticed the same disturbing trend over the past two decades, since soldiers returning from the first Gulf War in 1991 began in clusters to display symptoms of the disease. The VA is recognized throughout the ALS community for its cutting-edge research, and it counts among its members approximately 1,000 sufferers, the largest registry of ALS patients anywhere. This allows the program to work with an extensive resource base. Dr. Kupersmith's medical teams are conducting experiments on mice found to possess a genetic defect similar to the human gene that triggers the disease in the 10 percent or people who contract familial ALS. VA scientists and researchers have completed a number of studies on the changes in biochemistry and physiology that may indicate the onset of sporadic ALS. "We hope that someday this will all lead to treatment and perhaps a cure," he says. "But unfortunately, that day is a long way off."

On the other hand, the VA has made great strides in experiments that have shown to ease the suffering of ALS victims—more on that later—but until someone comes up with the elusive cure, ALS victims must continue to live with the disease's cruelest irony. Patients in the late stages of ALS eventually, inevitably, experience total paralysis, with their eye muscles and sight the last to go. And yet—a spike-through-the-heart "yet"—in nearly all these cases the afflicted person's mind remains sharp and alert. This condition is referred to as "locked in"; sufferers are conscious and aware of their environment, but cannot interact with that environment in any way, as they are force-fed nutrients and oxygen into the shell of their inert flesh.

It's a few weeks before his jump, before he would cross skydiving off his personal bucket list, and Gary Temoyan is recalling his not-infrequent "Why me?" moments. How he lost 25 pounds because he would not eat; how his wife left him; how his depression nearly destroyed his relationship with his sons. "Sometimes I'm bad now, but I was a monster in the beginning," he says. "Mad, screaming all the time. I won't say the diagnosis caused the divorce—we were going downhill anyway. But it certainly hastened it. All I felt was the unfairness of it. I've led a healthy life. An athletic life. I eat well. I've got great kids, wonderful boys..."

At the mention of his sons, Temoyan's face crinkles. His eyes close and the part of his body that he still controls trembles as he sits in his motorized wheelchair. He covers his eyes with the good left hand, the hand he can still move, and takes a deep breath. The tears fall through his fingers.

Temoyan's right hand, as if made of rubber, droops off the arm of the wheelchair. I reach out and run my fingers over his index finger and thumb. It's warm to the touch.

"I can feel that," he says. "I just can't do anything about it."

The tears stop. It was with great effort, I can tell. "All the parts of my body that don't work, I can still feel. I can tell you that right now a fly is crawling across my left foot."

I look down, shoo the fly. He tries to smile. He offers to fetch me a beer. He doesn't need his mother for that. Joan and her husband, Armand Temoyan, a former Philadelphia rug merchant, have only this week moved back north from their Florida retirement home to live with Gary and the boys. To help with the cooking and the cleaning, to pull on Gary's socks and Velcro his sneakers, to zip his fly when his fingers fumble, to turn him in bed when he cramps. But Temoyan doesn't need his mother to fetch us a beer. He has installed ramps in his doorways, and he can do that himself. Still the tough cop. He lifts his right hand with his left arm, the only working limb he has left. "But for how long?" he says.

Now there are two cans of Coors Light before us, and Temoyan jerks his chin toward the involuntary muscle twitching in his left bicep. He has long since learned the technical name for the twitches. "Fasciculations." All humans experience these, which are usually so benign that they go unnoticed. An ALS sufferer's skin fairly jumps. "That's my motor neurons firing the nerve for some reason. They don't know why. It's coming up the left arm now." He lifts his full beer can. "If I pick this up I can feel it. I have that memory of what it was like, how it started, in the other arm. So I know this is coming. Hopefully slower this time."

There is no history of ALS in the Temoyan family. And though the disease's symptoms initially present themselves in one of the four neurological quadrants of the body—the bulbar segment for the head; the thoracic segment for the spine; the lumbosacral segment for the legs; or, as in Temoyan's case, the cervical segment for the arms—they all lead to the same conclusion. "Some people, such as Gary, are slow progressors," says his neurologist, Lauren Elman, M.D. "They plateau for a certain amount of time, but that plateau will not continue forever. You can make predictions about where the disease is likely to go, the most common patterns. But none of us can tell for sure what a patient is going to look like a week from now, a month from now. In the end, however, it is all ALS."Temoyan himself is all too aware of what he calls his own roller-coaster ride. "Am I on the upslope right now?" he says. With great exertion he shows me how he can use his left arm as a lever to help him wobble on his withered legs for a few seconds. "Or am I just going steady?" He sits back down, his exhaustion palpable. "Or is the big drop right around the corner? There's never been a documented case of ALS stopping, much less going into remission," he says.

Temoyan has written his will, but contrary to his original neurologist's recommendation, he did not quit the Lower Merion police department right away. He trained himself to fire his gun with his left hand in order to pass his annual firearms test, and he threw himself into the desk job his superiors provided. He refinanced his home to pay off his wife's share when she moved out, and gained back the weight, all 25 pounds, with burgers, milkshakes, and cheesecake. He knew that the weaker he became, the sooner he would die. As the disease spread to his legs, he learned to walk with a cane. He showed up at the station house 5 days a week that first year, then 3, then 2, and now, today, he tells me next Wednesday will be his last shift. "I stopped carrying my gun—I didn't want to hurt anyone. But when it comes to the point of having to ask other cops to help me into the toilet stall, it's time to get out," he says. "Plus, I want to use what energy I have left to spend with my kids."

If there is one positive Temoyan has taken from his affliction, it is a reaffirmation of human kindness. "As a cop, you become jaded," he says. "People lied to me on a daily basis. You ask them the time of day, they lie to you." No more, he says. He recalls the fundraisers held for him by various community organizations and police associations to build assets in the "Special Needs Trust" his older brother administers. It is that money that helped fund the ramps in his house, his wheelchair, and the small lift that rises to his second-floor bedroom. He speaks of the childhood friends who have reappeared in his life to proffer all manner of assistance. He mentions the woman, a complete stranger, who called one day to offer a donation—her late husband's specially equipped van, worth close to six figures. He'd died of ALS, she said.

Then our conversation segues to the "wonderful" Dr. Elman, who works out of Philadelphia's University of Pennsylvania Hospital, home to one of the most renowned ALS clinics in the country. Before he met Dr. Elman, he says, he felt he was being not so much treated as managed—"Diagnose and adios," in the medical shorthand. But the University of Pennsylvania hospital clinic is an experiment in multidisciplinary care, designed to address a myriad of physical, emotional, and real-life practical needs. It has mental-health experts, physical therapists, dietitians, speech and language specialists, pulmonary doctors, and social workers. Its goal, in Dr. Elman's words, "is to postpone the process of dying in order to continue the process of living."

Temoyan's most recent visit to the clinic was the first time he was unable to walk into the hospital on his own two feet. "That was hard," he says. "That was why my parents moved back. I've been cooking for the boys, actually teaching Joey to cook for himself. But, jeez, he's only 9 years old. It's good that he can go back to being a kid again. Plus, I'm finding..."—he stares for a moment at his lifeless legs—"I'm finding that I'm going to need a lot more help doing things."

Temoyan's voice trails off and he is silent for several moments. I bring up the BMW I noticed parked in his garage, a gleaming, black 2009 convertible he purchased last spring. His face brightens. "Part of my bucket list," he says. Like the deep-sea fishing trip he took to the Caribbean with his sons and his best friend; like the snowmobiling trip outside Aspen. Like the skydiving adventure he had just begun planning. His thoughts return to a recurring theme. "I used to be the fixer, the man in charge. Now I can't even lift an arm to put on deodorant. I wear a hat all the time because I can't comb my hair. I wear elastic-belted pants. I'm 40 years old, and I have to have my parents move back in with me."

He wheels across the deck and up the ramp to fetch us two more cans of beer. His good shoulder is visibly slumped.

I'm not going to lie to you," Dr. Elman says. "Right now the best we can do is look for the little, incremental clues to this disease, clues that probably won't help people now suffering from ALS."

This is a new experience for me. I've written about Parkinson's, cancer, all manner of post-traumatic stress disorders, heinous battlefield wounds, and traumatic brain injuries. In each of these stories doctors always held out a hope, however thin or distant, for a treatment, if not a recovery or cure. Not so with amyotrophic lateral sclerosis.

Lucie Bruijn, Ph.D., chief scientist for the ALS Association, describes the global effort to combat the disease among researchers in gene therapy, stem-cell biology, and genetics. The journal Nature reported in August 2010 on the discovery of a protein produced by the human body that may act as a deterrent to another protein believed to have a critical role in the spread of ALS. The italics are mine; the scientific literature on ALS is filled with such hesitant modifiers. "The breakthroughs that excite us won't lead to a treatment tomorrow," Bruijn says.

ALS research advocates also chafe at the disease's "orphan" status. As Bruijn explains it, patients contract ALS at nearly the same rate as other neurodegenerative disorders, but they die so much more quickly that pharmaceutical companies sense only a minor market for potential drugs. The only FDA-approved drug to treat ALS—riluzole (brand name Rilutek), an amino acid blocker—scarcely delays its progression. "The unfortunate truth about this drug," Dr. Elman tells me, "is that in clinical trials the margin of effectiveness was that it slowed time to death, or time to permanent ventilator support, by about 3 months."However, because of the clusters of soldiers returning home from the first Gulf War with ALS symptoms, there is some hope for patients enduring those "wasting" months. I recently viewed videos of paralyzed patients controlling computers and wheelchairs solely with their thoughts. The still-experimental technology, called Braingate, a collaborative venture between the VA and medical researchers at Brown University, involves implanting a baby aspirin–size electrode into a patient's lower cortex so that it detects brain waves and sends a signal to the motor neurons. Naturally, this process alone will not work in ALS sufferers whose motor neurons have ceased to function. But when this technology is combined with another process involving implanted wires in the body that serve a similar, impulse-transmitting function to motor neurons, locked-in patients have even been able to move previously paralyzed limbs.

The VA has already begun experiments with ALS patients. "It is called proof of concept, and it is the closest we've come to helping people with ALS," Dr. Kupersmith notes. "It's not a cure for the disease, but I think it will help a lot of people stricken by it."

But this help, he admits, is still some ways off, which leads me to thoughts of Temoyan's family, especially his mother, praying for a cure but recognizing that one day her son will be locked in. He won't be able to tell her where she might soothe an ache, where she might scratch an itch. She'll peek her head into his bedroom in the middle of the night to listen for his breathing, wondering if his lungs have stopped working.

It is a horrifying future, one few diseases can match. Facing this, ALS patients tend to shut down and draw a thick curtain between themselves and the outside world. But not Temoyan, which Elman admits surprises her. "He's the kind of guy you wouldn't think would be able to handle this. Macho guy, with a macho job. He was all about his motorcycles and his gun, and when one by one these things are taken away, well, just looking at it on the surface you don't necessarily anticipate that most people will rise to the challenge as well as Gary has. He has really chosen to fight this disease. Just the fact that was able to walk for 2½ years after diagnosis, well, that in itself is extremely rare."

All serious diseases are hell on the sufferer's family. But ALS, with its certainty of permanent cognitive imprisonment, is particularly invidious. Joan Temoyan, in fact, had previously voiced her dismay to me that Gary had not yet sat down with his sons to explain what was truly happening to him—that he is dying. Joey and Tyler have attended ALS events with their father, including Phillies games. "They know Daddy's sick," Temoyan says, "that he has a disease that affects his arms and legs, that something's happening to Daddy's body."

The message he prefers to convey is, I still love you, and I'm going to be here. That "here," however, is becoming harder to maintain. By the time I meet Temoyan, roughhousing with the boys has already become a thing of the past, and even his occasional forays into their street hockey games—he and his wheelchair make a formidable goalie—last only a few moments before he is panting from exhaustion. "I don't want to upset them," he says. "I hope and pray for a cure in my lifetime, but I'm not stupid. I can see myself turning worse. Death is so hard for a young child to comprehend. But I also know I can't wait until the point where I can't speak anymore."

So on one unseasonably cold Friday night in October—2 months after Temoyan swooped to the ground in a parachute; 2 months after his mother again expressed to me her sadness that Gary had not yet spoken to the boys about his future—Temoyan, his ex-wife Layne, and their sons gathered in the living room of his home. A few days earlier the psychological therapist at the hospital had provided Gary and Layne with a list of questions that would help the boys open up about their father's deteriorating condition. Why do you think Grandma and Grandpa moved back here? Why do you think Daddy needs so much help doing normal things? Gary glanced at the list often as his ex-wife steered the conversation. "The key was to have them engage us," Temoyan tells me the next morning. "To get them to ask the questions. Layne was good at that. She was on the floor, curled up with Joey. Tyler sat on the couch next to me. It was hard, really hard. I was afraid I would break down."

Layne and Gary went through the process with their boys. Remember when Daddy limped? Then Daddy needed a cane? And now the wheelchair? Well, Daddy has something called ALS, and we want to explain to you what that is.

They told the boys that Daddy would be getting worse, and Gary joked that there would probably come a time when Joey might have to feed him, "the way I fed you for all those years." Then they told the boys that despite the scientists and doctors all over the world working to beat this disease, right now there was no cure. Nine-year-old Joey knew what that meant, but Tyler, just 6, was a little unsure. When Layne and Gary explained further—"that's why you see Daddy getting weaker"—Tyler began to cry. And Gary and Joey began to cry. Tyler left the room and returned with his two favorite stuffed animals. He placed them on his father's lap. "We hugged, and cried a little bit more. I told them how much their mother and father loved them, and I promised them that I would never lie to them, that I would tell them when I felt, when the doctors felt, that I was getting worse. They seemed to accept that. And, I swear, I feel like there was a 1,000-pound gorilla lifted from my shoulders. I think my sons felt the same way."
And when it was over, after they had all shed their final tears, Layne went home. Joey microwaved popcorn, Tyler put in a DVD, and the three Temoyan men settled in on the couch. Together they watched Cloudy with a Chance of Meatballs.

"Best damn movie I ever saw," says Gary Temoyan.

Monday, May 16, 2011

Post 24 - "Simple Twist of Fate"

A quick look at my blog tonight revealed that it has been two weeks since I've posted. Honestly, it does not feel like it has been that long. Looking back, with the computer problems I was experiencing, it turns out that I have only written one post over the course of the last month. It has been a month of ups and downs, and thrills and spills. Actually, there really weren't any thrills, but there were ups, downs and spills. The up and downs have been varied over the past month, and I will get to them in some detail later on, but for now, I want to tell you about the spills.

The spills that I am referring to occurred nearly one month ago. One week after my semi-fall on the ramp (Post 22 - "Catch Me Now I'm Falling") Tracey and I decided to take the girls to Great Adventure for the first time this year. We had last gone back in October, and during that visit, I was still able to walk around the park. Granted, I needed to use the children's stroller as a pseudo-walker, and I needed to take frequent rests, but I was still able to walk the park. Six months later, I knew there would be no way I'd be able to make it from the car (with handicapped parking) to the entrance. If I was going to go, it would have to be in a wheelchair. Since I was still waiting for insurance to approve my power wheelchair we would have to use a manual wheelchair. I think even Tracey was a bit surprised about how quickly I consented to using the wheelchair.

We were in the park for less than five minutes before I started to question this decision. Sydney was sitting on my lap, and Tracey was pushing us along, when we came to an area where the pavement turned to brick. One brick was not flush with the pavement and was raised up about an inch or two. Guess which brick we ran into? The chair stopped and fell forward, with both Sydney and I included. Sydney ended up with a slight cut on her lip. I on the other hand, had a bump above my left eye, and banged up my left ankle. The same ankle that had sent me to the emergency room several days earlier. After lying on the ground for several seconds, Tracey and I started to strategize about how I was going to get up. At that point, a person came up and offered to help, followed shortly by another person. The two guys quickly lifted me back into my chair, temporarily restoring my faith in humanity. We went on with our day as if nothing had happened. We were really enjoying our day until about two hours later. As Tracey was pushing me along, this time with Emily on my lap, we managed to go over a piece of pavement that was missing about a 3 inch divot. Again, the wheel got stuck and this time, both Emily and I went flying out of the chair. Emily was crying hysterically and became our immediate concern. After seeing no visible signs of injury, we were finally able to calm her down. It seems that she was upset and crying because she had dropped pretzels. Again, thankfully, I took the worst of it. This time, I had a bump over my right eye, along with a small cut. Additionally, I banged up my right knee pretty bad. Once again, several people immediately offered to help and were able to get me back into my chair. Again, I was surprised at the willingness of people offering to help. As the crowd dispersed, I noticed a woman, a few feet away from us in a power wheelchair coincidentally (if you believe in coincidences), who was kind of staring at us. As we got settled and prepared to move on, she approached us and asked us if I was okay and if we needed any further help. She offered me the use her power wheelchair to borrow to get back to our car, stating that she knew how difficult manual wheelchairs could be. She then mentioned how easy her wheelchair was to use, perhaps to encourage me to get one of my own. When I told her that I was just waiting for insurance to approve one, she offered me the use of her power wheelchair until I got mine. Tracey and I really did not know what to say, but I knew there was no way I was going to take this poor woman's wheelchair from her. We talked a little longer, and she explained to us how the wheelchair that she was using was one of two that she had. The wheelchair that she had with her was her backup chair that she told me she got from craigslist. I told her that I would start looking for a backup chair on the web that evening. She went on to tell us how she had also procured a number of ramps through various sources that she is uses in her home and for when she travels. She became insistent that she was at least going to give us a ramp, for when I got my wheelchair, if we were not going to take her wheelchair. She wanted us to call her when we were about to leave the park so she could meet us in the parking lot. Up to this point, we still did not know this woman's name. She introduced herself and told us her name was Dana. She then exchanged cell phone numbers with Tracey. As we walked away, Tracey and I discussed as to whether we were actually going to call her. We decided that she was either one of the craziest people we had ever met or one of the nicest.

About two hours later, when we are about to leave the park, we began to contemplate what we should do as we headed for the exit. We decided that Tracey would call her, thank her for her support, and her generous offers, but graciously decline them. As Tracey was pulling out her cell phone in front of the exit, Dana came up to us. Coincidentally, Dana and her family were leaving the park at the same time. Again, she offered us her power wheelchair and when we declined, insisted that we take a set of ramps. Both Tracey and I consistently reiterated that we did not want to put her out or be of any trouble. Dana had explained that her friend was already out by her car getting the ramps ready for us to take home. If we would just tell her where we were parked she would drive over to us. Now for those of you that don't know, the parking lot at Great Adventure is pretty huge, and since this was the week of spring break, the parking lot was very crowded. In fact, in addition to the handicapped parking spaces being full, the entire parking lot was full and the overflow parking lot was being used that day. As we continued into the parking lot, we were both heading in the same direction. Finally, Dana pointed to a minivan and stated that that was her car. Coincidentally, we were parked right next to her. As we were driving home, Tracey and I talked about the way things unfolded that day, and the strange set of coincidences. Had the wheelchair never hit that small crack in the pavement, or if we had gotten there 10 seconds later, we may never have met Dana. Had we not be leaving the park at the same time, we may not have gotten back in touch. Had our cars not been parked next to each other, we may have never seen each other again. Because of that chance meeting, I was encouraged to look for a backup power wheelchair on craigslist, which I picked up two weeks ago for the bargain basement price of $200. Thanks to Dana, we now have a ramp to get the wheelchair in and out of our minivan, while we search for a handicapped accessible van.

Chances are, if Dana had never introduced herself to us that day, we most likely would have gone home feeling a little down and depressed. Perhaps we would have been a little bit more hesitant to go out again in the future. Instead, our day was turned 180° because of some small gestures from a few people and a great big gesture from one person.  It made me realize that I am not alone and reminded me of the great support I have received thus far from family and friends.  Most importantly, it reminded me that nobody knows for sure what tomorrow will bring, and maybe, just maybe, good things are right around the corner.

Monday, May 2, 2011

Post 23 - "Long May You Run" (Aurora's song)


On Saturday, June 5, we will be attending Emily's year-end gymnastic show. As excited as I am to see my little girl perform, I am somewhat disappointed, since we will be missing the Great Strides Walk to Cure Cystic Fibrosis (CF) going on that same afternoon in Poughkeepsie New York. That afternoon, my friend Jeff, his wife Vanessa, and their daughter Aurora, with a whole host of family and friends, will be walking to raise awareness for a cure for CF. Aurora, my pseudo-niece, who turned two years old, last December, was diagnosed with cystic fibrosis, shortly after birth. Cystic fibrosis is a life-threatening genetic disease that causes mucus to build up and clog some of the organs in the body, particularly the lungs and pancreas. It is one of the most common chronic lung diseases in children and young adults. There is no way to accurately predict how long a person with cystic fibrosis will live. More than 45 percent of all people with CF in the US are 18 years or older, and the current life expectancy is in the mid-30s. Currently, there is no cure for cystic fibrosis.

Next Saturday, May 7, I will be walking in the Great Strides Walk to Cure Cystic Fibrosis in Mercer County Park, since I can't be with Jeff, Vanessa and Aurora in June.  Although I may be the last person you'd expect participating in a fundraising walk for something other than ALS, for a number of reasons, it's something that I could not even contemplate not doing.  Recognizing that the economy is tight all over and that charitable donations are taking a hit as well, I realize that I could possibly be jeopardizing some financial support for my own walk or other fundraising events, by asking people to sponsor me in someone else's walk, but I urge you to please give to help find a cure for cystic fibrosis.  Jeff and I have known each other for over 30 years, and have been very close friends for approximately the past 20 years, this despite the fact that I once broke his hand playing hockey. He is the Kramer to my Jerry, the Oscar to my Felix, the Jay to my Silent Bob. Jeff and Vanessa have greatly supported me since the day they found out about my diagnosis.  At times, he has been like a brother to me, which by definition, makes Aurora my pseudo-niece. 

Sydney and Emily with their "cousin" Aurora.  Spring, 2010

Over last few years, I have had to begin to come to terms with my own mortality. I have tried to approach this objectively and optimistically with as much honesty and dignity as I can muster. So far, I think I've done okay. I know, there's always room for improvement. One of things that has concerned me, was what we will be going to tell Sydney and when would we be telling her. Sydney has already recognized that I am not typical. She appears to instinctively know what questions to ask and when to ask them. Additionally, she realizes that at times I need help with things and she has always been eager and willing to do just that. Emily, as well, seems to know that I am limited in some ways. She too, like her sister, is eager to help but not always quite as effective. I worry that as a five-year-old, this may be too much for Sydney to handle. Besides seeing me in a wheelchair, seeing me fall a half dozen times and seeing me lying on the ground at least a half-dozen other times, she has to try and comprehend why daddy can't get out of a chair without mommies help or why daddy always has to drink with a straw, in addition to another 100 things that don't make sense about her daddy, on a daily basis. I recognize that some day, I may have to tell Sydney and Emily that I am dying. As so many of you have told me that you could not imagine what I and Tracey are going through, I cannot even imagine how difficult it must be for Jeff and Vanessa.  They are faced with the dilemma of trying to figure out how and when to tell their daughter, what the future may hold for her.

Last summer, when Tracey and I first began talking about participating in the ALS walk in Philadelphia, we did not have high expectations. After all, this was our first time participating. We had hoped that we would have about 25 people (and that included family) walk with us, and that we would be able to raise around $1500. If we accomplished that, we would have probably felt very good about ourselves. Instead, we had about 105 people walk with me that afternoon and we raised close to 10 times the amount that we had hoped to raise. Although the money was important, it was not going directly into my pocket, and therefore did not have a direct impact on me. What did impact me greatly, however, where family and friends, half of which who probably drove an hour or more, that came to Philadelphia that Saturday morning to walk with me. Our team, the ALS Wing Fighters, ranged in age from 18 months to 76 years old, included walkers from four different states, and included friends that I have known for over 35 years, as well as people that I had just met that morning. The donations to our team, in my honor, ranged from $13 in change, collected by one of my friends two sons as they "trick or treated" the previous weekend, to a $1000 donation from my brother-in-law Scott's company (even though Scott is the company's comptroller, I'm sure the donation was on the up and up) K B. Alloys.  Scott, and my sister-in-law Betsy, together with their sons (Colin and Evan) raised more than $2000. Another half dozen families raised close to $1000 each. Before the money even started to pour in, I had people signing up to walk with me left and right. Each night, Tracey would check our team roster and tell me how another one or two or three people signed up to walk. People who I've known for years, people who I've met recently, and people I had yet to meet.  It really didn't hit me until it came time for us to order shirts for the walkers. We had attempted to solicit funds from a business who would be interested in sponsoring us to help pay for the T-shirts. My friend, Kristen, was able to enlist the support from her cousin, the owner of Tiki Hut Tans, to cover the cost of T-shirts. I told Kristen, that we probably need about 50 shirts. (At the time, we only have about 40 people signed up to walk, but I was pretty confident I was worth at least 10 more people.) Tracey and I ended up paying for another 50 shirts, and when all was said and done, there were over 100+ family and friends walking with me on this day. We were officially over 110 people, if you count the ALS Wing Fighters-West Coast, put together by my friend Becky, who walked in Washington State, with her family and friends.

Mommy and daughter

After recently just looking at some pictures from the walk, I still cannot believe the amount of support we received that day. And I can't even begin to to put into words the emotional uplifting I received from that support. I remember telling people how well I felt that day and that even though I did not walk the full course, I felt like I could.  Still, when I think about it now, over six months later, I still become energized and reinvigorated for the fight.  This coming November, I would love to duplicate that feeling. However, this time, it is Aurora's turn, and although I am sure she is too young to fully comprehend and appreciate what is going on around her, on behalf of her, I cannot discount the impact, and the emotional support and love that Jeff and Vanessa will receive from this and the empowerment it would give them to continue the fight on Aurora's behalf. Jeff and Vanessa keep us frequently updated on Aurora's condition as well as the state of affairs regarding CF research. Many researchers believe that a treatment or cure will happen in the next 10 years. I know that the few steps that I take next Saturday will not lead directly to a cure but it will mean something to me, for a number of reasons. I know it will mean something for Jeff and Vanessa, as well.

Daddy and daughter

If you wish to support my walk or join our walk team, Aurora's Warriors II, you can do so by selecting this link:


Your support would be greatly appreciated. Thanks!