11th annual Help Find A Cure 4 dystonia Friday Dec. 19th at Hazleton Elk’s Club

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

Service Dog Humor

Friday April 4th, 2014 – I returned to the world of full blown dystonia due to an infection.   No biggie?  Been on antibiotics for 7 weeks and for the inquisitives that means you take pills that make you sick but (Hopefully) kill the infection.  Returning to this world (condition) also requires revisiting dystonia meds.  This is the tricky part because these meds will help, but to maintain their effectiveness the dosage must be increased slightly over the time period involved.  Side effects are complicated yet amusing depending on your seriousness thermometer (As you may have guessed – my level of seriousness is that of a first year toddler on Christmas).  No short term memory, No Driving, lethargy (Enemy),  high levels of emotional outbursts (Lots of crying for no reason),  Zombie like behavior (No comment) but despite these side effects – I have to use my Dog and reintroduce him to Service Dog  Duties and after a 4 year hiatus this has been challenging, rewarding and the discovery of Service Dog Humor.

I use Hutch for balance, falls (He can help me up) and when dystonia really attacks – He has a rare gift of feeling this and making sure I’m safe. How? you ask – by licking my face when I can’t open my eyes and bent over in pain, by placing his huge head on my lap and looking at me as if to say “Yo Pop, I’m here don’t worry”.   He is trained, certified and really good.

When I conduct open gyms with my girls basketball team, He’s there right by my side.  For those of you who know Hutch, he’s the Brad Pitt of dogs so you can only imagine when my girls see him, they want to pet, hug and just eat him up.  They cannot.  His vest says, “Please ask to pet” which is the protocol for all service dogs.  However, after practice, I will take his vest off and let him enjoy their attention.  The funny stuff occurs when I’m teaching on the court, I normally put Hutch in a down position (Meaning=He’s lying down off the court but always able to see me.  If he thinks I’m in pain or senses something He will start to yelp and crawl slowly towards me.  The girls obviously think this is hilarious but He really should just lie there and watch.  The discovery and one of the great gifts of having dystonia is to constantly search for ways to avoid pain, postures that you cannot control and different ways to get through the day.  My discovery was:  ok, He thinks I need him so I take his leash wrap it around my neck with enough slack that He can comfortably stay on my left side and follow me as if an extension of my left arm.  It works.  He walks through drills, teaching on court, and is even more effective without distracting practice.

So I have this somewhat important meeting with my supervisors at the high school where I coach Basketball.  I get a ride with my Mother in Law (Remember no driving).  Hutch and I walk through  the parking lot 7:40AM  and are met aggressively by an over zealous security guard.  Yelling “Is that  a service dog?  I’m holding his harness, with one eye open and head down, answer “Yes He is”.  I continue to walk to the front door.  The security guard says, “Can you provide verification”.  Now it becomes funny.  As I try to paint a vivid picture of this encounter – Here’s a 6’2 guy resembling a thin Quasi Moto (spell check), one eye closed, in clearly visible pain and walking with a 116lb white Lab wearing a service dog vest and harness.  I normally don’t carry his service dog card because I have never had to produce it but for some odd gut intuition I brought his Official Service Dog Badge which has his picture and verification.  We were both welcomed and allowed to enter the building.  It’s close to rush hour and the beginning of the school day so lots of activity.  I’m required to sign in which I can barely see the sign in sheet.  We are then required to put on visitor stickers.  Yes, We as in Hutch and I are required to wear visitor stickers.  I put my visitor sticker on.  By this time Hutch is lying on the floor in a “down” position.  Several teachers and students approach me and ask if they can pet my dog.  I oblige because he’s already lying down and thought he deserved some Love.  While this was taking place, the security guard was trying to put a visitor sticker on Hutch’s vest.  The sticker won’t stay and after several attempts Hutch is now sprawled out, belly exposed and soaking up the attention from several people.  The security guard was determined to follow protocol but to no avail – the visitor’s  sticker would not adhere to the vest. Petting continued, I couldn’t stop laughing at the persistence of the guard and Hutch sensed the humor that continued for several minutes.  Eventually, the guard gave up and we received permission to go on our way.  Finding humor through dystonia does exist.

 

DBS Deep Brain Stimulation Works

I have had DBS hardware, wires, batteries in my body since 09/29/04 and because my left battery is at such a high voltage 3.8, I have to get it replaced every 11-13 months – which means I’ve had 10 battery changes.  Understand,  DBS is not a cure but can certainly curtail symptoms and improve your quality of life.  In addition, the programming of neurostimulators is an art that skilled Nurses, Medtronic experts and Physician Assistants have the skills and experience to control but in reality it’s almost like hitting the lottery when going through each patients programming stage.  In my case this process took just about 3 years which got me to a point of living or trying to live a purposeful life.

My last battery change 1/14/14 seemed to go well, surgery 7AM, recovery 10AM, lunch in NYC noon,  back on the road, 1:30, conducting varsity girls basketball practice 5PM, unbeknownst to my players.  4-5 weeks later I noticed a lump on the back of my head where the wires run to my brain, slight puffiness where the new device was implanted and a painful pulling of the wires as if they were being ripped out of my skin.  Sounds painful and it was somewhat but dystonic people have a high threshold for pain so we classify pain differently.  After a 5 min. examination (Yes, 5 min examination) it was determined there was no infection – just keep an eye on the stimulator.  Life goes on – my team finished an amazing season, winning the league championship, (2nd ever in school history) 18 wins and our first win in district play.  We had the player of the year, and several all league players – all in all it was an Amazing Year!   But, that pain, swelling, DBS stuff was getting worse.  Made another appt. to NYC and guess what – Now I have an infection April 1st (and no April fools day joke)  Hello Genius thats what we thought last time.  Hence, we lost 5-6 weeks of getting treatment.  I was furious and grew more aggravated when the doctor explained his 4 options.  I couldn’t get out the door quick enough.  The one great thing about being a dystonia patient for so long is having Great connections all over the country and access to the Best of the Best doctors.  After calling my guru neurologist in Minnesota and DBS Programmer – they said get out of NYC now and get your butt to Boston ASAP.  They had already phoned one of the top Neurosurgeons, Dr. Ron Alterman at Beth Israel Boston – and thoroughly briefed him on my condition.  Drove to Boston the next day, met Dr. A, got evaluated and we all decided on the plan of attack. (This all occurred in a 36 hour time period)

Surgery Thursday April 3 8AM to remove infected device and wires, recovery was rough because they had to pry the wires from the skin inside my neck and head which had been embedded for 10 years.  Now I’m living without the DBS stuff that gave me my life back.  Additionally, have a pick in my left arm to administer an IV everyday until May 16 which means 42 days of antibiotics to rid the infection.  After this 7 week period (Still no DBS stuff) I have to wait 30 days to make sure infection doesn’t recur. So tentatively scheduled for June 17th to get Neurostimulator placed back in my body to help with this dreaded dystonia.

Life goes on – We were scheduled to attend the final four in Dallas TX, thank goodness for trip insurance and thanks to the NABC for helping with tix. exchanges.  We watched from the 11th floor hospital room 1/2 block from Fenway Park.  Trying to have some fun I started a .25 cent block pool.  Didn’t go over to well since most patients were recovering from brain surgery, trauma, or other serious conditions.  So I pulled a MacMurphy (One flew over the cuckoos nest)  and got the nurses and anonymous doctors involved.  Needless to say the pool was filled in no time and there was a buzz now to watch the games..  The buzz was apparently too loud because I was in the process of losing the first of my 3 roommates that night.  But we all had fun.  Roommate #2, didn’t speak English but kept pushing the nurses button and requesting morphine and oxycotton – I swear there was a drug smuggling ring going on – He was gone within 12 hours probably from the drugs?   Roommate #3. a young kid in his 20’s came next.  His first question, “Hey do you guys smoke?”  He lasted a few hours – got caught smoking in the bathroom for what seemed like an hour and escorted out.

So after spending spending 5 days, several roommates and the loss of my beloved neurostimulator, it was time to head home.  With the collaboration of several doctors a prescription plan was adopted to get me to the June 17th Day.   Artane was the main med – Artane works but causes severe loss of short term memory.  So I have to write everything down but the problem is I forget where I write the important stuff.  Other side effects from Artane, Valium and Klonopin is the Zombie effect.  These work  somewhat  but dystonia comes back full force.   What does that mean = Imagine laying down in your driveway and a mack truck running over your head then backing up again and again while someone takes a sledge hammer to the side of your head while randomly firing  a pellet gun to the back of your head.  So, once again, I’m not sure dystoniacs are tougher or able to absorb pain better but I cringe when people complain about headaches, or athletes complain about tough practices.  Off the soap box but thought it was my responsibility to see into the life of what happens with dystonia, infections, and getting far away from doctors who are either pre-occupied, not well versed with dystonia or you just don’t trust their plan(s) of action.  Trust your own advice and ask questions to people, doctors and educated medical professionals before you embark on your next path.  Lastly, If a doctor won’t give you his/her cell # don’t trust them and if they don’t call back within less than 24 hours find a new Dr.  The Silver Lining because there always is – found a new team of Amazing Doctors in Boston and my Dog  Hutch (Trained Service Dog)is temporarily out of retirement and back to work with me.

What is dystonia?

For some, Writing is a way of expressing oneself, exploring where your words will take you, a career? a hobby, or just helping others understand what happens?, sharing your story/life with others in hopes of helping/raising awareness/ or therapy for the writer. I’m not sure why I write or why I listened to my Mom who taught me the importance of the written word? Everyone has their reasons and most of the time it’s a way of dealing with Life. dystonia is a constant fight against your body. Not a once in a while fight but an everyday battle. Being trapped inside a body where the mind wants you to do one thing but your body won’t allow these thoughts to come to fruition. There is so much to learn, write, research but time doesn’t stop and Life goes on. Some days writing is all one has but fighting for others and fighting for reasons beyond oneself is the only way somedays to cope. If this helps one person then it gives me and my writing purpose or at least makes me feel that I’m making a difference or not. Regardless, stories must be told, shared, and learned from because as I fight there is a world that does not understand dystonia and just trying to Help for those who can’t fight. As I’ve stated many times, I don’t need attention, sympathy, prayers (because there are too many others who suffer much more than me,) I just want the sufferers to keep trying/hoping/living and fighting because the more people/doctors/researchers who have powers to help – this mini contribution (aka writing/sharing) may Help.

dystonia is constant pain

dystonia never stops

dystonia makes you wonder why

dystonia takes your driving privileges away

dystonia attacks anyone anytime anywhere

dystonia is humbling

dystonia takes pain to levels you can’t even imagine or describe

dystonia can win if you focus on the above BUT

dystonia can teach you to do things differently

dystonia allows you to see things in a crooked or twisted manner

dystonia makes people stare and wonder what the he77 is that and that makes me laugh

dystonia forces you to challenge your inner strength and figure out how to get thru the day

dystonia makes you cry a lot but laugh even more

dystonia allows me to bring my dog out of Service Dog Retirement and back to active duty

dystonia makes my dog realize that I need him more than he needs me

dystonia is hard to describe and I can go on and on but I’m tired of crying and need my dog to take me for a walk

*For the record I don’t hate anything but dystonia is becoming hard not to

My Mission

Mission Stats updated 1/8/2014

Battery Powered Person

I thought it might be helpful to take a step back and share my mission of building awareness around dystonia.

Through a variety of activities and forums including our annual benefit, dystonia advocacy day on Capitol Hill in DC and writing this blog to share my thoughts on living with dystonia,  I want to raise awareness for this rare disorder, provide insight into how dystonia impacts my life and inspire people to live, work, exercise and chase all dreams while including some humor/laughs along the way.  My focus is in on other people with movement disorders but I am finding the struggles, opportunities and view of life is applicable to all audiences.

After attending the 2004 Children’s Symposium on dystonia in Chicago at the headquarters of the Dystonia Medical Research Foundation (DMRF), I was motivated to do something to help the children and anyone who suffers from this horrible disorder.

With a lot…

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10th Annual Help Find A Cure 4 dystonia Benefit

Details:

Date: Friday December 20, 2013

Where: Elk’s Club, East Broad Street, Hazleton, PA

Time: 500PM – 9:00PM

Donation: $20/person includes Buffet, Admission, Silent & Live Auction, Tricky Trays, 50/50

Celebrity Guests: Russ Canzler, NY Yankee Signee & Hazleton Native; Eric Shrive, PSU Football Grad & Scranton Native

100% of money will fund dystonia research; www.dystonia-foundation.org  Tax ID #95-3378526

 

As we prepare for the 10th Annual on the eve of the eve of the event – I must reflect on how we got here and what’s happened over the past year.  To start, the event has an amazing committee of volunteers who help with organization, food, ideas, gifts, donations and spreading the word which is Priceless to say the least – Brian & Michele Patrick, Samantha Marchetti-Neaman, Kim Chipeleskis-Platek, Tricia Chipeleski-Marnell, Tara Marnell, Maria & Steve Fiore, Ann Confliti, Cindy Treon, Lori Kmiecinski, Cathy Brogan, Pete Ciavarella, Heath and Rebecca Pursell, Brian Billig, Helen Capparell, Gary Smith (Emcee & Auctioneer), Dave Seamon (Standard Speaker), parents, friends and the Hazleton Community are Hugely Responsible for our continued success.   Some current and past donors: Dennis Karmonick, Keith Segedy (Stripes&Strikes), Doc Palermo(Past Emcee & Auctioneer), Cynthia Kirchner (Model/Actress/Co-Host for many years/ Hazleton Native) Shenanigans, Cuz-N-Joes, Damon’s,  Fred Barletta (Past Emcee), WYLN and SSPTV, and so many others who help. 

The planning for the event starts the day after the previous event and continues throughout the year with solidifying the date a year in advance, writing letters/emails/phone calls for auction items, monthly meetings to keep everyone on track and organizing all the donated food, set-up, clean-up, volunteers for the event day. 

Who would’ve thought ten years ago in a small dive bar packed to the rafters with once famous Freddie Mitchell (Eagles Wide Receiver) and asst. trainer Eric Sugarman (Now head Trainer Minn. Vikings) we’ve raised over $165,000.00 which goes to the Dystonia Medical Research Foundation to aid in finding a cure for this debilitating movement disorder.

Debbie Durrer, Director of Development Dystonia Medical Research Foundation, Chicago, Illinois will be in attendance along with many out of town dystonia support group members and doctors who deal with dystonia on a daily basis.

Why have the Event?

After suffering a hit n run accident while training for a triathlon with visions of becoming a Division I head basketball coach, my life entered a challenging phase.  The brain trauma from the accident caused me to develop weird symptoms which lead to my diagnosis of dystonia.  Not knowing what dystonia was, dealing with this life altering movement disorder of which there is no cure, I turned to the Dystonia Medical Research Foundation(DMRF) for guidance and support.  They saved my life, gave me purpose, and reasons to live by helping me focus on raising awareness, exposing me to the many people and children who suffer from dystonia and many undiagnosed or misdiagnosed to help in their quest to Find A Cure.  After attending the Children’s Symposium for dystonia in Chicago in 2004 and meeting these amazing kids, Cathy and I decided to do something to help the children and raise awareness & money to aid in research and give back for all the help & support the DMRF gave to me. So 10 years later, here we are and still fighting to Help Find A Cure.

In preparation for the event, I am thankful, grateful and lucky to have been blessed with dystonia – Yes, I said blessed with dystonia, because it has opened new doors, opportunities, friendships and provided new goals to strive for and new adventures that I would never have had the fortune of experiencing.  As I prepare for the 10th annual benefit, I also prepare for my 10th battery change.  I am a battery powered person, Hence the blog – “Battery Powered Person”, as a byproduct of DBS Deep Brain Stimulation.  My 10th battery change is 3 weeks away – Simple Procedure – Open up the chest,  take the old batteries out and put the new ones in.  It’s all done in a few hours and back to life, recharged and good to go unbeknownst to Most!  Miraculous to say the least,  these batteries have allowed me to complete 5 triathlons, 1 biathlon and resume my coaching career at Crestwood High School, where I’m currently the Head Girl’s Coach.  The batteries (Neurostimulators) are not a cure but certainly through programming and trial n error have given the quality of life back and I am forever grateful.  Mostly, dystonia has taught me to focus on what I can do, not on what I cannot but with that being said, if I want to accomplish something, dystonia will not stop me because I will figure out a way! (Not to bore – read my previous blogs)

Bring friends, neighbors, a pleasant disposition and a big appetite – Guaranteed, you will have a good time and you may even bump into a few battery powered people!