10th Battery Change – I am Everready!

Originally posted on Battery Powered Person:

So here we go again, 10 for 10 (10th Battery change in ten years) On the eve of my decade long adventure as a cyborg,and after a hard-fought road win at Pittston Area HS, Cathy and I will depart Hazleton at 3AM to NYC, surgery at 7:30AM, Recovery at 9ish and back on the road by 10:30, We should be back Home to pick up Hutch, and get my recharged battery to practice where my (8-3, 5-0) (First Place Wyoming Valley Conference Div. I) Crestwood Girls Basketball Team prepares to entertain, none-other than Hazleton – where my wife is the Asst. Athletic Director.
Below is a reflection from my 9th battery change last Nov. 2012. Thank goodness for modern medicine!
PS. Don’t leak this to my girls team – they have no idea – This is more for my Twitter followers and fellow dystoniacs and Deep Brain Stimulation Survivors proving…

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10th Battery Change – I am Everready!

So here we go again, 10 for 10 (10th Battery change in ten years) On the eve of my decade long adventure as a cyborg,and after a hard-fought road win at Pittston Area HS, Cathy and I will depart Hazleton at 3AM to NYC, surgery at 7:30AM, Recovery at 9ish and back on the road by 10:30, We should be back Home to pick up Hutch, and get my recharged battery to practice where my (8-3, 5-0) (First Place Wyoming Valley Conference Div. I) Crestwood Girls Basketball Team prepares to entertain, none-other than Hazleton – where my wife is the Asst. Athletic Director.
Below is a reflection from my 9th battery change last Nov. 2012. Thank goodness for modern medicine!
PS. Don’t leak this to my girls team – they have no idea – This is more for my Twitter followers and fellow dystoniacs and Deep Brain Stimulation Survivors proving, once again, Anything is Possible and There is HOPE!

Being a battery powered person certainly has its advantages and challenges but the conversations on the beach are well worth the inconvenience or the luxury of having to replace the batteries every 11 months.  I couldn’t begin to tell how many people have come up to me when shirtless and said, “Dude, what are those?”  or the stares of wonder.  It’s a motivator to (A) Stay in shape so my gut doesn’t get bigger than my batteries and being the vain person I am don’t mind the stares, (B) To develop a unique tale:  an Irish saying, “Don’t let the truth get in the way of a good story” is another way to handle the two batteries protruding from my chest, the wires (vein looking) running down my neck behind my head and connecting to the base of my brain along with the 2 lumps on my follicly challenged nugget.  Depending on the inquiring audience determines how Irish the explanation can be.  Being a FBI (full blooded Irishmen), you can imagine the stories that might escalate from this gene defect (bad pun but a good one nonethesless 0r at least I’m laughing).

This will be my 10th battery change in as many years.  To understand Deep Brain Stimulation, the electrodes are implanted in the basal ganglia and the wires are tunnelled along the neck connecting to two batteries tucked under the skin in the upper chest (Not man boobs - prefer male enhanced chest).  The batteries are then turned on (as I’m sure most of my readers are while reading this).  Then the fun begins: Programming of the neurostimulators (brain pacemakers/batteries).   There is some data which suggests which settings are best for parkinson’s patients and with an experienced programmer there is a base for dystonia patients as well.  But the data and sharing of information must be improved and medtronics/neurologists and everyone involved must start a national database of which setting are successful for different types of dystonia.  This would be extremely beneficial for more efficient programming and would improve the time frame after surgery for patients to begin pain free living or the suppression of dystonic symptoms.  Otherwise the complicated method of figuring out what settings are best for each person is like hitting the lottery.

Depending on the voltage level of the batteries determines how long they will last.  My settings are Left battery -  3.8 volts, pulse width 210, frequency 130, right battery - 3.0 volts, 130 frequency and 210 (varies) pulse width.  Left battery should last 13 months but there’s no accurate or definitive way to test how much juice is left in the battery.  Once the battery starts to drain, they go quickly.  Which means time to get a replacement because dystonia comes back and the pain is, let’s just say at times mind numbing.  To put it in words, the Summer of 2003 in my attempt at writing (M2Y F2OLT3S2 = Motivated Minds Yearn For Feelings On Life’s Trepidations, Temptations, Thoughts, Sayings & Songs, Poetic Philosophy that lives in the soul and breathes  through the heart)  which sold a whopping Zero “0″ copies, I wrote about pain.

Pain

There is so much pain that I don’t know how to handle it.   I refuse to give in but I truly can understand how one can lose oneself to escape the hurt.  Some of the hurt is physical – some mental – some emotional – some spiritual. I have been questioning every belief and diety and challenge all my  inner beliefs and upbringings – There is no control and the emptiness that I’ve always felt has gone to a new level.  Exhaustion and medication are temporary cures while my mind and heart try to cope and recover.  I feel guilty for what I have and what others don’t but the writing expresses my feelings  without shame.  I feel challenged and refuse to give in or up but search for the inner strength in each pressing minute.  (Summer 2003)

Pretty heavy stuff but each year I am reminded of this excerpt prior to the battery change.   I do mask it pretty well or at least try to and never complain because it could always be worse. So next Monday the 19th of November, the pain will be gone (hopefully) and my new battery will be at full strength.

My Mission

Pat Brogan:

Mission Stats updated 1/8/2014

Originally posted on 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!

Thanksgiving, A Time To Listen, Be Thankful, and Give The Occasional First Class Bump

Reflecting on this past year, there is so much to be thankful for: Surviving my 9th battery change and getting ready for my 10th in 47 days!! Completing my 5th triathlon in Dewey Beach and with the aid of a new bike finished 90th/889, completed in my first Biathlon (Swim/Bike) finished 5th overall and 3rd in my age group = Still can’t believe it?? Thanking my wife and beach friends (Esp. John D. and Lisa W.) who trained with me all Summer. Thankful for my amazing family and friends who continued to support my quest to Help Find A Cure 4 dystonia and for making the 9th annual benefit a great success – Here’s looking forward to the 10th annual on December 20th. Thankful for the opportunity to coach Girls Basketball at Crestwood High School and privileged to teach some very dedicated and talented young women. I am thankful to be doing, once again, what I love to do = Coaching Basketball and Building A Program! With countless open gyms, Summer Leagues & Camp, Fall league games, 7 practices and 1 scrimmage behind us, we are making steady progress. Looking forward to getting our full squad on the court for the very first time and Ready to Compete!

Last November, I’m sitting in the doctors office room reading a book waiting to go through my annual pre-op testing, as one lady walks in then another.  They sit next to each other and without a beat the 2nd lady says to the first, “My husband just passed away”,  the first lady says, “I heard something about that in church”  then proceeds to say immediately after, “You are older than me aren’t you”.  The 2nd lady, says “No I graduated a year after you”.  The first lady (the lady with no clue who doesn’t listen) then proceeds to argue with the 2nd lady (who’s husband just died) for several minutes on who’s older.  I sat across the room eavesdropping wanting to get up and go smack the 1st lady in the head and tell her to wake up but all I could do was give her the evil eye (which she never saw). Confirming an old quote - {“Going to church doesn’t make a person holy – Just like living on a farm doesn’t make you a chicken”}   At this point I’m beside myself thinking what in God’s name is happening or WWED (What Would Enzo Do – the cool dog from, “The Art Of Racing In The Rain”.   Time passes and as I’m getting my scripts for my bloodwork and insurance stuff,  I see the 1st lady walking towards the exit (where I am standing).  It’s time for the “First Class Bump”,  as she nears the door my backpack suddenly falls, I bend over to pick it up at the same time she passes = the First Class Bump is successful, She yells, “Excuse me”  which I respond, “I am so sorry I wasn’t paying attention, I should be more observant, so sorry”  She walks out.  Not sure if that was the right thing to do but mission accomplished.

After my early morning swim, I went to Walmart to get bananas (that’s correct – I shopped for one item). Cathy hates when I do that but figure that’s all we need.  Anyway, as I’m walking to the checkout line my neck is all over the place and unable to control it and losing balance almost crashing into the pumpkin pies,  I stop and notice all the Thanksgiving decorations.  Overcome with emotions and starting to tear up (Yes, I am a wuss).  Thinking about the 5 strangers who saved my life 11 years ago (Kay Newett, Richard Flick, Courtney Fowlin, Karen Briggnola & Patti Notte)  – Just wanted to Thank them.  But also wanted to thank the driver who hit me because now dystonia has a voice for the next generations to Hopefully find a cure.  As I checked my  bananas, the women said, “Good Morning, are you okay”  of which I said, “Yes, I really love bananas”, She laughed and I laughed. Happy Thanksgiving to All and Wishing Everyone The Best!

Thanks For Saving My Life

Twelve years ago today, my life was spared and I promised to Remember those Great Samaritans who saved me and to continue to Pay It Forward by performing Random Acts of Anonymous Kindness to pay tribute to my Guardian Angels.  Here’s what I wrote in the Morning Call and Easton Express on Oct. 13, 2001.

Grasping a hand was paramount after bicycle crash: [First Edition]  Special to the Morning Call — Freelance.  Morning Call. Allentown, PA Oct. 13, 2001. pg. A. 39

On Sept. 25 at 5:50AM , I left 614 Parson St. in Easton on my 10 speed bicycle heading to the Easton YMCA to swim. I have been traveling this route for 1 1/2 years, four to five times per week.  On this particular morning it was dark, wet, and foggy, so I wore my reflector jacket and, as always, my bicycle helmet.  I remember passing George Street and beginning to head  downhill on Lafayette Street.  My nest memory is of waking up completely numb, unable to feel anything.  I sincerely thought I was paralyzed or on my way to dying.  One recollection I have is of trying to grab someone’s hand and asking them to hold me and don’t let me go.  I remember being fearful of falling asleep for fear of not waking, and asking the people to help me stay awake.  At the time, I didn’t know if these were real people or angels.

I can’t remember seeing any faces, just hearing voices.  Eventually, I felt someone’s hand.  I knew once I felt a hand that I wasn’t paralyzed and I knew I had a chance.  I later found out that I made all the people promise to call and come visit me so I could thank them for their help and kindness.   I’d be remiss if I didn’t mention the  incredible feelings that I remember from the accident.  While I was lying and being attended to, there was an overwhelming feeling of loneliness and helplessness until I could hear and feel someone.  I felt like I was slipping away and falling into this lonely, abandoned state while trying to grasp onto something to escape.  That’s when I remember trying to grab the hands of the people who came to my rescue.

It seemed like this battle was going back and forth and it wasn’t until I was lying in the hospital that I realized I was going to make it.  Once I realized where I was, excitement rushed through my body and I felt I needed t see and touch every person within reach.  It was a euphoric feeling that masked most of the pain and made me feel so blessed and thankful for the wonderful people who came to my assistance.  I was so appreciative of the friendliness and care from all the doctors, nurses, and helpers from St. Luke’s Hospital and the paramedic crew who transported me.  I felt confident that I was in the best of care.  Later, I found out there were four people who came to my assistance and a fifth person who also stopped and ultimately saved my life.  They found me at 6:20AM, which means I had been lying on the road for almost 20 minutes, in the middle of Lafayette Street, with my bicycle  up ahead and the front wheel across the road.  The four people who initially found me are Kay Newett, Richard Flick, Courtney Fowlin and Karen Briggnola.  They are all employees of American Health Care Apparel.  The fifth person who stopped was Patti Notte, a nurse at the Lehigh Valley Medical Center.  I thank these five people for their heroic and courageous efforts to help save my life.  Their efforts and kindness are constantly in my thoughts and prayers and they always will hold a special place in m heart for giving me more opportunities to live.

I also want to recognize  the overwhelming support I have received from Lafayette College, especially the athletic department.  In addition, I am grateful for the help and humor of the basketball  coaching staff and players, and the love and strength from my family and girlfriend, who have made my recovery progress so quickly.

Because of all the support and kindness bestowed on me, I have not even considered the reasons for the accident.  One detail I can recall is looking over my left shoulder because I heard a speeding car and then I felt something.  Someday the memory of the accident will come back, but I would rather focus on the courageous people who found me and came to my assistance and all the love and support I have received from all my family, co-workers and friends.

Thank You for saving my life!

Training Partners

This past weekend my wife, Cathy, slayed her swimming portion on the co-ed relay team in the 17th annual Dewey Beach Triathlon.  The Team finished in the top 5 and I couldn’t be more proud of her not only because of her performance but for being my training partner all Summer.   Cathy teaches swimming and helped me tremendously by continuing to encourage me when dystonia was taking over my body.

To understand, what that means, one must know the background of our swimming history.   In 2001 when I had this crazy idea of competing in triathlons as a sidebar to college coaching, Cathy joined me in this quest.  I can still remember the day when I completed my first ever mile swim at the Easton YMCA and calling Cathy at 6:30AM so excited to tell her the news.  She was already an accomplished swimmer and I was just getting started.  When we swam together, Cathy would lap me several times and I would try to keep up with her – It was great motivation to get better.   Then the accident which changed everything on 9/25/2001.   Swimming became my only escape from pain from  all the twisting, spasms & cramping due to dystonia.  The Silver Lining was I became a very good swimmer and over the next 9 months was cruising by Cathy.  This eventually changed after brain surgery when I could no longer swim.  The brain stimulation which was helping my dystonia had a side effect which would not allow me to use my legs to kick compounded with other symptoms made it virtually impossible to swim 10 feet.  I tried and tried and Cathy encouraged me to try different strokes and techniques but nothing worked.  This went on for over 3 years until we talked about turning my batteries off to swim.  Trial and error and several weeks later, We discovered by turning off my right battery only I could swim with minimal dystonic symptoms but still no use of the legs.  The quest together continued for the next 2 years, training my upper body to swim a 1/2 mile all the while being encouraged by my training partner!

This past May, Cathy decided to try a 1/2 mile ocean swim with a relay team.  She was certainly ready and trained.  I gave her advice, coaching but nothing teaches better than actually doing it.  She went out too fast, panicked and bombed miserably.  Her determination to improve, invest in a wetsuit and commit the entire Summer to conquering the ocean swim was now our Quest.  With the triathlon 3 1/2 months away, We swam, trained and pushed each other to Get Better.  I tell this story because my wife has been there for me during the darkest of dark days with dystonia, coaching and all the challenges that come from living with this obstacle and now was my chance to stand by her and celebrate her Amazing Accomplishment.  I couldn’t be prouder of her and all she’s accomplished and for being my training partner or Better yet I’m her training partner!