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?

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

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!