Thursday, September 22, 2011

My Uncle Glenn (part 1)

This past weekend was a weekend full of celebrations.  We celebrated my cousin, John and his new wife, Amy's new marriage on Saturday and on Sunday we celebrated my Uncle Glenn's 60th Birthday {more on that later}.  My Uncle Glenn, is my Aunt Bonnie's (my mom's oldest sister) husband. Aunt Bonnie and Uncle Glenn had their 41st wedding anniversary in June.

The past few years have been difficult on Aunt Bonnie and Uncle Glenn .  My Uncle Glenn had always been very active, he worked a full time job and at night he would help his dad on the family farm. Uncle Glenn and Aunt Bonnie have two kids, my cousins, Allan and Connie.  Uncle Glenn coached their little league teams and he  rarely missed a game when Allan and Connie played high school sports. Connie went on to play volleyball at Towson University and Aunt Bonnie and Uncle Glenn traveled all over the country to watch her play.

Uncle Glenn was always the uncle to start a game of volleyball at a family picnic. Even at age 55 he was playing kick ball with his five grandchildren. That all changed in 2008.

I am going to copy & paste the introduction from Uncle Glenn's Caring Bridge website:

In the fall of 2008, Glenn started experiencing some symptoms of shortness of breath when exercising or walking any distance. His doctor ordered a nuclear stress test and then Glenn was referred to a Dr. Kelly Sullivan. In January 2009 Glenn was scheduled for a cardiac c​a​t​h​e​t​e​r​i​z​a​t​i​o​n at Anne Arundel Medical Center and at that time they placed two stints into one artery and one stint in a second artery. Glenn saw some improvement with the symptoms he had been e​x​p​e​r​i​e​n​c​i​n​g​, however he still felt very short winded the morning after his release. A week later the trip to the c​a​r​d​i​o​l​o​g​i​s​t​, they ordered another nuclear stress test. In February 2009 Glenn went back to Anne Arundel Medical Center for his second cardiac c​a​t​h​e​t​e​r​i​z​a​t​i​o​n​, and a fourth stint was placed in a third artery. The doctor explained that the previous test had revealed a false read in that one artery. Finally Glenn did see some improvement. 

In March 2009 Glenn started experiencing some back pain and weakness in the left leg. It was very slight in the beginning however the condition continued to get worse. The cardiologist stated that everything was fine with the heart. Many of us believed that when they did Glenn’s second cardiac c​a​t​h​e​t​e​r​i​z​a​t​i​o​n that the doctor possibly hit or damaged a nerve when performing the second procedure. Glenn went from one doctor to another, specialist after specialist. It seemed like one roadblock and d​i​s​a​p​p​o​i​n​t​m​e​n​t after another. Glenn had a​p​p​r​o​x​i​m​a​t​e​l​y 5 MRI’s in the year of 2009. In the meantime Glenn’s condition was getting worse with him experiencing the same weakness in his left hand. Finally in December 2009, Glenn was able to get an appointment at John Hopkins. The doctor ordered yet another more extensive MRI and more blood work, and again, no answers. February 1, 2010, Glenn went to John Hopkins for a nerve test, prior to his scheduled doctors appointment. Allan and Connie met Glenn and Bonnie at John Hopkins that morning because they all wanted answers. After the nerve testing Glenn and his family sat down with the doctor and NOTHING could prepare them to hear the doctor say that the diagnosis that they waited so anxiously and impatiently to hear was Glenn has ALS (aka Lou Gehring’s Disease).

After a diagnosis like that, Glenn and his family had to wait until April 7, 2010 for an appointment with the ALS specialist Dr. Nicholas Maragakis and the John Hopkins ALS Clinic.

As of right now, Glenn’s condition continues to decline, since March 2009, Glenn is also experiencing the symptoms now on his right side and now uses a cane and walker. He needs a wheelchair for longer distances and continues to see changes in physical ability almost weekly.

 Even though Aunt Bonnie, Allan and Connie were happy to get answers, learning Uncle Glenn had ALS was difficult. No one we knew had ALS and the only thing we knew about it was that was the disease that eventually killed Lou Gehrig (the baseball player that held the record for most consecutive baseball games played until Baltimore Orioles player Cal Ripken broke it in 1995...ironically Aunt Bonnie & Uncle Glenn were at the game that Cal ended his streak).

Uncle Glenn is still battling this horrible disease.  He has to wear a mask several times that is attached to a BiPap machine.  For someone who never smoked to have trouble breathing and shortness of breath is sad.  He can't walk on his own now and has to wheel chair or walker to get anywhere.  Aunt Bonnie and Uncle Glenn had to turn one of their spare bedrooms into a handicap bathroom wide enough for Uncle Glenn's wheel chair.

We are extremely lucky that we are close to one of top research hospitals in the country with Johns Hopkins.  I know Aunt Bonnie and Uncle Glenn feel better knowing that Uncle Glenn has the best doctors in the world!
Uncle Glenn with his granddaughters, Gillian (driving), Emma & Darby

Uncle Glenn working on the farm in 2010 with my cousin, Connie and her daughter, Morgan
A really blurry picture of me, Ci, my cousin's daughter, Kacie, my other cousin's daughter, Gracie and Uncle Glenn in 2010.

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