2014 has been a challenging year and continues to be but There’s always a Silver Lining!
January of this year I went in for a routine 10th battery change, Something never felt right from Jan. 14th (Day of surgery) but my girls’s basketball team was vying for their 2nd Division I Wyoming Valley Conference Championship ever in school history so I kept coaching despite knowing something was wrong. I was right and an infection was detected some time later after we won the championshiop and a District playoff game. April 3rd my Neurologist recommended switching Neurosurgeons and getting to Boston Beth Israel ASAP (we were there and wires were removed from chest to middle of head) – I was very Lucky. On powerful antibiotics until Jan. 19th, weekly blood work and tests. 2nd infection from the antibiotics and Hutch back to Service Dog duty along with not being able to drive for several months. During that time, a broken pick line and traveling to Boston again for check ups and more medicines because I had no left stimulator = basically full blown dystonia. Jan. 19th Dr. inserted a new wire and a rechargeable battery (10 year guarantee). Needless to say the battery lasted several hours until the Dr. found a 3rd infection at the tip of the brain, next day all hardware removed from brain and body. Medications increased and stronger antibiotics for at least 90 days. During this time had another pick line put in, developed a blood clot and rushed to Lehigh Valley for treatment (Happy 4th of July). Another pick line inserted and weekly blood tests and blood work until cleared for DBS (Deep Brain Stimulation) October 14th another DBS surgery – successful but programming set me back 10 years. Every 2 weeks for the next 5-6 months, driving to NYC so my programmer (The Best Around – Joan Miravite) can slowly increases my voltage, pulse width and frequency. This is the toughest part because the brain is in the healing process for 6-9 months.
I know I’ve written about this before so you’re probably sick of reading my challenging year but I’m not doing it for me, nor am I looking for attention, seeking sympathy, I am not an inspiration just lucky. Inspiration are the people and children who suffer from dystonia and there’s no medications or procedures that can help or reduce the pain and they keep battling. Inspiration are the Thousands of soldiers who are protecting this great country while sacraficing their lives while away from their families. I have had to recreate myself several times, not being able to drive and restrictive activities but I’m not the type of person that looks back and feels sorry for what I’ve been through – my battle cry is looking ahead and what’s next because when someone talks about what I’ve been through I can’t listen and very difficult to talk about so if you see me crying their not tears of sorrow or joy, they are tears of trying to look forward and continue to battle and fight for those who can’t.
dystonia is the most misunderstood and misdiagnosed brain disorder Ever. This I read on the Movement Disorder websites. I still go to hospitals and doctors, nurses, people still have no idea what dystonia is. In the dystonia community dystonia is referred to as the suicide disorder (read that in several dystonia blogs) because it never stops and can wear you down mentally, physically and emotionally.
I will continue to try and raise awareness and monies for research and do whatever I can because, once again, I am one of the Lucky Ones and I’m going to keep doing what I can do to Help and I’ll continue to coach basketball despite the challenges and continue to train for triathlons, biathlons as soon as I’m healthy enough. I coach for those who can’t. Soon, I, hopefully will resume training and will compete in endurance activities to challenge myself and prove that dystoniacs can and compete for those who can’t. I am a Basketball Coach and I am an Athlete and I am a dystonia volunteer advocate. Without the support of my family and a wife who has been rock solid and some close friends (Becca Matteo & Tad Anderson) who traveled to support Cathy and I to Boston for the several surgeries – I could never have gotten through this year. And just when you think you’re life is hitting rock-bottom an email and phone call can be a Life Changer – I reconnected with a 23 year old Silver Lining that gave my Life more purpose and meaning.
Please come and enjoy the event this Friday Dec. 19th, 6-10ish no admission (just donations), sports auction, PAC Signatures will be in attendance with tons of Sports Memorabilia, my sports stuff from friends at the College and Pro levels, Great Food – all donated, Rehab Rox Band, who donated their time because they are friends and want to Help, Gary Smith from 96.7 Gary in the Morning Radio Show (Stroudsburg, Pocono Area) will be MC and Auctioneer. Always a Great time. To date we’ve raised over $180,000 for the dystonia Medical Research Foundation. See info letter Below
This marks the 11th annual Help Find A Cure 4 dystonia Benefit to be held on Friday December 19th, 2014 at the Hazleton Elk’s Club in Hazleton, PA from 6:00PM – 10:00PM To date we have raised over $170,000 which goes directly to the Dystonia Medical Research Foundation for grants, fellowships and research to aid scientists & doctors to find a cure.
The highlight of the benefit has been the Assortment of local Golf Packages and the sports memorabilia auction which features, shirts, gear, autographed basketballs, footballs, jerseys, tix. and other gear. Schools that have contributed, (Lafayette, U Penn, Georgia Tech, Rutgers, Northwestern, Villanova, Temple, Rhode Island, VCU, George Mason, Notre Dame, Michigan, Penn State, U. Denver, Boston Celtics, 76ers & Eagles, Minnesota Vikings and many others.)
Donations and/or gear can be sent to:
Pat Brogan; 1218 Cherry Blossom Drive; Hazle Township, PA 18202.
I have been living with dystonia since being the victim of a hit-n-run bicyle accident on 9/25/01 and my mission in life is to help raise awareness and money to find a cure and I’ve been a volunteer with the Dystonia Medical Research Foundation since 2003.
dystonia is the most misdiagnosed and misunderstood brain disorder that forces muscles in the body to contract or spasm involuntarily, causing twisting, repetitive, and patterned movements as well as abnormal postures. Cutting across all ages and backgrounds, dystonia may be genetic or caused by physical brain trauma. While not fatal, this chronic disorder causes varying degrees of disability and pain, from mild to severe.
While there is no cure for dystonia, the Dystonia Medical Research Foundation (DMRF) is committed to advancing research for more effective treatments, promoting awareness and education, and supporting the needs and well being of affected individuals and families. Founded in 1976, the Dystonia Medical Research Foundation is a 501(c)(3) organization (ID Number 95-3378526)
Thank you and I greatly appreciate your continued support.
Bruce Clark PSU and NFL Great will be signing autographs and taking picture
Rehab Rox Band will entertain from 8-10PM