The Circle of Life

Death is a Once in a Lifetime experience

The old Man: The old man (I use this term as one of respect in lieu of his name and to protect the privacy of those in today’s post) was approaching his nineties. He’d had a full life but the ravages of Parkinson’s disease had taken their toll. He was taken to the hospital for a routine problem but after an episode in the Emergency Room, still unexplained, had lapsed into a coma from which he would not awaken. The old man left this earth April 11, 2002 six months to the day after the Twin Towers were bombed. His date of passing was also of note as he died on his great grandson’s eighteenth birthday.

The Great Grandson: The great grandson, Theron, had his own struggles as well. His mother lost her life at age 35, suddenly and unexpectedly of the effects of a massive heart attack, the underlying causes of which are also still unexplained. She had been stricken as she sat behind the wheel of her car in a parking lot while chatting with a friend. She too remained comatose until her life ended weeks after the heart attack and two years after the death of her grandfather.

The old man’s brother: The old man had several brothers, one of whom also had a great grandson. His great grandson, Brian, was stricken at age 33 with Amyotropic Lateral Sclerosis, otherwise known as ALS or Lou Gehrig’s disease. The young man’s fight with ALS has been chronicled in the journal kept by the great grandson in his wife, http://www.caringbridge.org/visit/hokiebrian as well as highlighted in this blog. Last Friday Brian lost his fight with ALS. He passed away quietly after a long fight with the disease. He never lost his sense of humor or his brilliant mind. He packed more into 35 years that do most people who live more than twice that long.

The Great Grandson Theron and the Circle of life: Theron lost his Mom not long after he graduated high school. He had three younger siblings to look after and he got on with his life. He joined the National Guard, married, attended college, worked two jobs and did all the responsible things firstborn children usually do. He also had another event that ties into the theme of today’s circle of life post. On Father’s day, two days after the death of his distant cousin Brian, Theron became a first-time father. His daughter, Daija Michelle, is named in honor of his late mother. It is Daija’s photo that graces this post.

Words from Angela’s Ashes: From Frank McCort’s Pulitzer Prize winning book, Angela’s Ashes there is a conversation that echoes every time I think of the circle of life. Young Frank is about to go to America to try to make a better life. He and his family have been through a most difficult life of poverty and hardships. His mother has died and the paraphrased words of wisdom are, “Be good to the ones you love because when you no longer can you’ll wish you had.” We close with that thought. Hug the ones you love a little tighter, phone the loved ones from whom you are estranged and open a dialog. Remember that life is always too short but never too sweet.

A little blogging music Maestro... From the musical “Fiddler on the Roof, “La Chiam, To Life!”

Dr. Forgot
http://drforgot.com

Brian's Song

Son of Pianist turns Fighter

Uncle Pete, one of many brothers: My Dad had a passel of brothers. All were born of immigrant parents during or near the First World War years. That made them all draft age when the Second World War began. The brothers scattered throughout the world, serving in most of the theaters of war. My own father served by staying home and protecting the citizens of Clairton, PA as a local policeman. All uncles returned safely and settled in their home area, save one – Uncle Pete. He fell in love with a gal from Long Island, NY and settled there. He joined his father-in-law’s business and helped grow it from one-man-show to one of the most prominent businesses on Long Island.

Father to son: Uncle Pete named his firstborn son after himself. Cousin Peter and I had lots in common – both were saddled with being juniors, thus both had a family nickname. Both were restless souls who saw opportunity outside our community, and both went on to college and careers. But there were differences as well. While my musical ability was limited to playing the radio, Cousin Peter was a most talented pianist as a youngster. Many relatives thought he would be the first virtuoso in the family, and although my pre-teen and teen years were not steeped in the evaluation of musicians, he seemed awfully talented to me. But Peter eschewed a career in music for one in business, becoming a successful businessman and having a family of his own including son Brian.

Brian also had a song to sing: Brian by all accounts was a precocious youth. A bit athletic. A great personality. A fun loving gifted guy with a strong mind. He was the envy of many and the pride of his parents. But nobody realized what a fighter Brian would become and how, in the face of adversity he would stay upbeat, positive, and a loving husband, father, son, and friend. Brian graduated from Virginia Tech, married, and had children. He had a great job as an engineer and a wonderful life but began having recurring symptoms that he could not explain. Two years ago this month he was diagnosed with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. Brian’s own words and those of his wife capture his journey much more effectively than can I. Thus, I will excerpt from Brian’s Journal. For further information about the disease or how you can help, see the following web site: http://www.alsa.org/als/what.cfm

Excerpts from Brian’s blog: “I have been diagnosed with ALS, amyotrophic lateral sclerosis, better known as Lou Gehrig’s disease. My hope is to educate myself and anyone else interested along the way through many different vehicles. This “journal” is, I hope, a start. It is also to give me a way to convey what’s going on physically, emotionally and familially.

“Around the first of the year, I started noticing that my right hand was very stiff and was behaving oddly. I think it started with the computer mouse. It felt like I couldn’t move my right index finger and my right middle finger independently. Everyone who has ever operated a mouse knows that will drive you nuts as I was constantly right- and left- clicking at the same time, which again as most people will know, slows things down considerably. It then started going from stiffness to weakness. Things like gripping a pen or opening an unopened bottle of water were starting to become difficult. The worst thing was turning the key in the ignition of Jameela’s car. My car was, and continues to be, fine, but I’d have to reach over with my left hand to start her car.”

(Brian’s work and life centered on the computer so initial diagnoses suggested the possibility of carpal tunnel syndrome. Further tests were administered which diagnosed the ALS as the probable issue. An excerpt reflects Brian’s outlook on life.)

“I was accused today of being “oddly positive,” something that I know was meant with the greatest and most loving of intentions. And I kinda like that term. What better way to go through anything than with an attitude that is all things positive, even at those toughest and oddest of times. I’m sure there will be bumps on Oddly Positive Street, but it’s one that I’m going to plan to move to and hope to see many neighbors there with me... Thankfully ALS does not attack mental capacities so I will continue to work.... From what I have learned, there is no one true test for ALS. The diagnosis is made by putting all the various pieces of the puzzle together and ruling out other possible diagnoses and that is just what the neurologist did. At this point, it remains only my hands and arms that are weak. So far, there are no signs that it has progressed to the legs or face or beyond. From what I can deduce, the fact that it started in the hands and not closer to the core, means that it will progress a little more slowly..

“Today is the day we circle the wagons and start fighting. Rest assured that I am not in the middle of the circle with everyone surrounding, protecting and fighting around me, but at the 12:00 high noon position leading the fight. I couldn’t ask for better people to be in this with me. I know this will be tough, but no one is luckier than I am....”

(Brian tells what ALS ISN’T)

“Yes, ALS is a terrible disease and who knows where it will take us, but here’s what it isn’t:
*It isn’t painful;
*It isn’t numbing;
*It isn’t immediately physically disabling;
*It isn’t mentally incapacitating;
*It isn’t unknown to the research community; and
*It isn’t short on support groups.

“Sunday were my first “why me?” and “why us?” moments. They were bound to happen eventually, it’s not like they were unexpected. But they are not fun thoughts to have. Must be the engineer in me who needs answers and there just doesn’t seem to be an answer to that question. I’m not sure what’s more frustrating, the disease or the lack of an answer to the “why me?” question. I know I can’t dwell on it, and I won’t, but you can’t help but let it creep in once and a while.

One final ironic story. We’re at dinner tonight and I notice Jameela’s t-shirt. Turns out it’s from a fundraiser walk for ALS from a number of years ago up in Philadelphia. If I remember correctly, my father played in a tournament sponsored by Curt Schilling (see a few updates ago) and came home with a few t-shirts for us. There’s Jameela wearing it unknowingly tonight. Pretty ironic, isn’t it. She hasn’t worn it in years.

Fast forward two years. Brian is still courageous and family and friends are still fighting alongside him. The family is preparing for the “Walk to Defeat ALS.” Quoting from last week’s blog:

“Hey Everyone,

The 2009 Upstate Walk to Defeat ALS is a mere 6 weeks away. Brian's Blarney Blokes is off to a good start with 13 team members, BUT WE NEED YOU. Last year we pushed the 100 people number. Help us hit that again. There will be a potluck bar-b-que the evening before for all team members.

Or, if you are so inclined, why not create your own team. Get folks from work, school, church, the gym, anywhere, and give the Blokes a run for their money when it comes to having the biggest team or raising the most money. You and your team just might be invited to the BBQ as well.

To join the Blokes, go to http://web.alsa.org/site/TR?sid=4321&type=fr_informational&pg=informational&fr_id=5839
and follow the links to register. That same link will take you through setting up your own team as well. Or, if you'd like to support any one of the Blokes who are already signed up, there is a link for that to. Just go to http://web.alsa.org/site/TR/Walks/SouthCarolinaWalk?team_id=113130&pg=team&fr_id=5839
and choose the walker you wish to support. I sincerely hope you'll consider doing one or the other.

Thanks,

Brian”

We encourage everybody who reads this blog to support Brian and to support the Walk to Defeat ALS.

A little blogging music Maestro… “Hero, Through the Rain, Can't Take That Away, and Fly Like A Bird” all by Mariah Carey

Dr. Forgot
http://drforgot.com

ALS Revisited

ALS REVISITED

To bring you up to date: Last September we wrote a blog post on ALS. The acronym stands for Amyotrophic Lateral Sclerosis. It is a motor neuron disease, first identified in 1869 by the noted French neurologist Jean-Martin Charcot. Although the cause of ALS is not completely understood, the 1990's have brought a wealth of new scientific understanding about the physiology of this disease. Superstar baseball player Lou Gehrig brought national and international attention to ALS when he suddenly retired from baseball after being diagnosed with ALS.

Although the disease is often called “Lou Gehrig’s disease” it has affected many notable individuals including Hall of Fame Pitcher Jim "Catfish" Hunter, Senator Jacob Javits, actors Michael Zaslow and David Niven, creator of Sesame Street Jon Stone, television producer Scott Brazil, boxing champion Ezzard Charles, NBA Hall of Fame basketball player George Yardley, pro football player Glenn Montgomery, golfer Jeff Julian, golf caddie Bruce Edwards, musician Lead Belly (Huddie Ledbetter), and photographer Eddie Adams. Most recently, in my sphere of friends and family it has stricken Brian Nikolich.

Brian is a Hokie – not that I hold that against him. The Virginia Tech grad is in his mid-thirties with a loving wife and two beautiful kiddies. He is a Licensed Civil Engineer living in South Carolina who first had a hint of symptoms about 2 years ago. His blog can be read at http://www.caringbridge.org/visit/hokiebrian. He can be found on Myspace, Linkedin and Facebook.

Brian is a gifted young man who, along with his wife Jameela, is very active in ALS advocacy. They celebrated their eighth wedding anniversary in Washington, D.C., at The Association’s National ALS Advocacy Day and Public Policy Conference. The two also have participated in numerous other advocacy activities. Their Walk to Defeat ALS team, “Brian's Blarney Bokes,” raised more than $14,000 in 2008. The Walk to Defeat ALS is coming up again in April and as usual Brian is busy organizing for the fundraiser. This year his team is “Brian’s Blokes,” no Blarney. Or maybe there will be some Blarney this year - read the blog to find out.

About the Association: The ALS Association is the only non-profit organization fighting Lou Gehrig’s Disease on every front. By leading the way in global research, providing assistance for people with ALS through a nationwide network of chapters, coordinating multidisciplinary care through certified clinical care centers, and fostering government partnerships, The Association builds hope and enhances quality of life while aggressively searching for new treatments and a cure.

Each year, the Walk to Defeat ALSTM brings communities together in the fight against Lou Gehrig’s Disease. Though people walk for various reasons, they are united in the quest to find a cure for ALS.

About Brian’s Chapter: The South Carolina Chapter was founded in February 2006 to serve the needs of those living with Amyotrophic Lateral Sclerosis and their caregivers. The ALS Association is the only national not-for-profit health organization dedicated solely to the fight against ALS. ALSA covers all the bases — research, patient and community services, public education, and advocacy — in providing help and hope to those facing the disease.
The ALS Association (National Office and the South Carolina Chapter) operates under a shared mission: to lead the fight to cure and treat ALS through global, cutting-edge research, and to empower people with Lou Gehrig’s disease and their families to live fuller lives by providing them with compassionate care and support.

They work together to accomplish the mission. The South Carolina Chapter focuses primarily on helping local patients and families live with ALS while the National Office focuses primarily on research and advocacy. The Chapter supports the National Office through revenue sharing and research contributions. The National Office supports the Chapters by providing up-to-date information and materials.
Their accomplishments are made possible by the generosity of others. From the smallest donation to the largest gift, donors touch the ALS community with hope for the future.

Upstate Walk: Brian's Blarney Blokes. Brian writes, “Thank you for helping us reach our fund raising goal! Together we can make a difference in the lives of those affected by Lou Gehrig’s Disease. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatment and a cure. Please consider joining our team in the Walk to Defeat ALS™ or choose a team member from the list and donate to our cause."

Why We Need Your Help: Amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.

This crippling disease can strike anyone. Presently there is no known cause of the disease yet it still costs loved ones an average of $200,000 a year to provide the care ALS patients need. Help make a difference and donate or join a walk today.

http://web.alsa.org/site/TR/Walks/SouthCarolinaWalk/880348105?pg=team&fr_id=5839&team_id=113130

Also :http://web.alsa.org/site/TR?sid=4340&type=fr_informational&pg=informational&fr_id=5839

To Register: http://web.alsa.org/site/TR?sid=4321&type=fr_informational&pg=informational&fr_id=5839

In the spirit of full disclosure Brian is the son of my first cousin, Peter. But that does not make him or his fantastic wife Jameela any less special. Please join the walk either in person or virtually. Lave a comment if you need more information and I’ll forward it.

A little blogging Maestro… “We Are the World,” written by Michael Jackson and Lionel Rithie, conducted by Quincy Jones, and recorded by a group of superstars.

Dr. Forgot
http://drforgot.com

The Ravages of ALS

Of Baseball Players and Cousins Once Removed

A Big Man for America’s Pass-time: Lou Gehrig? Most sports fans remember the name but can’t quite put their finger on the man or the sport. Lou was a scholar first. He attended Columbia University in downtown New York on a football scholarship while majoring in Engineering. And he was a big student – a whisper over 6 feet tall and weighing in at 200 lbs. The Iron Horse, as he was known, was a native New Yorker, born 105 years ago. He batted and threw left handed and signed with the Yankees as a free agent, batting .423 his first season and .500 his second. Over the next 17 seasons he averaged .340. But Lou got sick. His body was ravaged by Amyotrophic lateral sclerosis, commonly referred to as ALS or Lou Gehrig’s disease. During his farewell speech Lou Gehrig was quoted as saying, “…I’m the luckiest man on the face of the earth.” Maybe ALS comes with a positive attitude.

Uncle Pete and Cousin Chipper: One of my uncles, Pete by name, returned from World War II and married a girl from New York. They had a son about my age whom they named Pete also, but instead of calling him Junior or Sonny, they called him Chipper. Chipper is a brilliant businessman who was a childhood prodigy as a pianist but chose the business world as an adult. He had a son whom he named Brian. Brian, like Lou Gehrig, was handsome, smart, and athletic. He chose Virginia Tech for his college, married sweetheart Jameela, and had a couple of kids. Then, like Lou Gehrig, he contracted ALS. And like Lou Gehrig, he considers himself the luckiest man on the face of the earth. He and Jameela have maintained such a positive outlook despite the hand ALS dealt Brian. Brian is receiving the best medical care and he and Jameela write a blog diary at http://www.caringbridge.org/visit/hokiebrian# If you’ve never heard of CaringBridge you need to take a look at the blog and their site.

Now is the time to act against ALS: I received an email forward today from Jameela in which she asked me to help with some legislation regarding ALS. The email follows:
Let's Pass the ALS Registry Act

Dear Jameela,

With just a few weeks remaining before Congress adjourns for the fall elections, the time has come for the Senate to vote on S. 3297 and pass the ALS Registry Act. We anticipate that the Senate may hold a series of votes on S. 3297 at any time from now until the end of the month so it is absolutely critical that you reach out to your Senators TODAY. This may be our last chance to pass the ALS Registry Act this year and take the next steps in creating a national ALS patient registry.

Thanks to your continued outreach, we are now just five votes short of the 60 we need to pass S. 3297! So please go to the Advocacy Action Center of our website and tell your Senators not to leave town until they pass this critical legislation. Let them know that people with ALS cannot afford to wait until next year. Let them know that politics should not come before patients' lives and that arguments that it costs too much are just excuses (the bill is an authorization and does not appropriate a single dollar!). And let them know you will be watching how they vote. Let's finish the job and enact the ALS Registry Act this year!

In addition to grassroots efforts, The ALS Association also has engaged in other advocacy efforts here in Washington. We helped to organize a coalition of more than 140 different organizations who recently sent a letter to the Senate in support of S. 3297. Moreover, Oprah Winfrey has helped generate support for S. 3297 during her daytime talk show by requesting viewers urge Congress to support one of the bills included in S. 3297. These combined efforts, along with your grassroots outreach, are sending a loud and clear message that hundreds of organizations representing millions of Americans are in this fight together. We want the Senate to pass S. 3297 this year. So again, please contact the Senate today!

Finally, as you reach out to the Senate, we also want to emphasize how important it is for you to support S. 3297 and not advocate for the ALS Registry Act to be considered as a separate piece of legislation. Our supporters in the Senate have included the ALS Registry Act as part of S. 3297 in order to pass the bill this year. And it likely is the only way this can be accomplished, for there simply is not enough time remaining in this year's session to pass the ALS Registry Act as a stand-alone bill. In fact, if we do not unite behind S. 3297, Senator Tom Coburn will succeed in his more than two year quest to kill the ALS Registry Act. We can't let that happen. People with ALS can't afford to wait any longer.
Contact your Senators TODAY!

If you have any questions or would like assistance reaching out to your Senators, please contact the Advocacy Department at advocacy@alsa-national.org.

I encourage every reader of my blog to contact a senator regarding this legislation.

A little blogging music Maestro... Any song from the album “Faith and Courage” by Sinead O’Conner.

Dr. Forgot

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