The Dark Side Of dystonia April 2015

Before you read this story, Promise that you will only share privately  with people who suffer from dystonia, Neurologists, Neurosurgeons, Advocates and Sincere People who can Help all of us.  As a favor to me don’t repost on public facebook pages only on dystonia related websites.  My reasons:  I don’t want my Girls Basketball team to know of my suffering,  I need no sympathy nor attention outside the dystonia community.   I’m sharing to help people especially children with dystonia and their parents to understand, educate, be aware of good & bad doctors, the challenges currently and in the future, to keep Hope Alive through awareness, advocacy, and fundraising for research/medical advancements/surgical  advancements and  because selfishly this writing will help me get through today.

13 years ago today, I was plowed over while riding my bike around 5:44 AM – It was a hit and run.  Unconscious and left on the road to die for close to 20 minutes until 4 people found me and then the 5th person a nurse.  They stopped because I was in the middle of a busy two way road and  said  it looked like a big garbage bag until they saw my leg.  They later told me they thought I was originally dead  and even later told me they couldn’t believe I survived the accident.  At the time I was training for a triathlon and an assistant division I basketball coach.  My career was ready to take off and was on the verge of becoming a Head Division I Coach – my Dream & Goal.  I was completely obsessed with coaching basketball at the highest level and was a very good endurance athlete.  Concussion,  brain and spine trauma and lots of road rash but recovered quickly and back coaching several days later.

Finished the  year at Lafayette, hired at Penn State July 1 2002, Married August 11th – the Dream was still alive.  I always had some neck and back pain from the accident but the pain kept increasing throughout the next 11 months.  May 2003, the head coach resigned and the whole staff released.  The new head coach at PSU never even gave me a chance.  I Loved Coaching at Penn State and would have never left.  For those who  knew me, they would and I would tell you that had Penn  State hired me one year earlier – we would still be there that’s how confident I was in my abilities to recruit and coach.  Nonetheless, it was a blessing in disguise because the regime that took over – Let’s just say we  were very different.

After being let go, I was searching for answers from countless doctors starting in January 2003 about this escalating pain and twisting postures. At Penn State I fell in love with swimming because it was the only thing that helped the pain (A Pain that is so horrific that it paralyzes your zest for life).

Finally, diagnosed in June 2003.  I had never heard of dystonia.  Started treatment at Columbia Presbyterian with botox injections and a myriad  of  medications.  Supposedly botox works for 70-80% of dystonia patients.  It did not work for me, I got worse but the doctor insisted that I continue treatments for 1 year despite my insistence that it was making me worse. The meds would help for a week or two then just stop working.  Most of the medications you had to keep increasing the dosage until your body couldn’t handle the side effects then you would back off a little but continue taking the pills.  While my doctor was treating me at Columbia Presbyterian, I was a volunteer coach at Georgia Tech.  That year Georgia Tech went to the Final Four and lost in the National Championship.  I loved Atlanta and the head coach Paul Hewitt for giving me that opportunity.  The experience cannot be described in words – just seemed dreamlike!  I left Atlanta in April and was trying to get back into coaching but dystonia was getting worse.  I did have several offers to coach at some Division I schools but couldn’t commit because I didn’t feel I could give them 100%.  Some Head Coaches even offered to take me at 80%.  I was honored and those coaches I will never forget.

May 2004 my doctor finally stopped the botox injections and I finally got smart, left his office and would never seek his treatment nor recommend him to anyone.

Luckily, I found Dr. Jerald  Vitek at the Cleveland Clinic – One of The Best Neurologists.  By the time I had the chance to be treated by Dr. Vitek, I was on enough medication to kill a horse. The Silver Lining other than meeting Dr. Vitek, I was chosen by an Independent Film Co. to be the focus of a PBS documentary “Twisted”  that followed me around for a year and a half, including the operating room.  I accepted a position as the head boys basketball coach 4 days prior to brain surgery (Deep Brain Stimulation) and  had to resign 6 months later because dystonia was crushing me.

The next 3-4 years I was going back and forth to Cleveland for programming and searching for answers.  This was a very dark time for me because the pain was unbearable, the meds were just as bad,  I was losing hope, shut down on social activities and friends and was on the edge of giving up.  I couldn’t swim or run and exercise was virtually impossible.  I was pulling away from my family and wife because I couldn’t handle her watching me suffer.  Her dog first, then our dog, Cali stayed by my side and would not leave me during these dark times.  I’m not sure I would  have continued had Cali not been there.  I still cry whenever I write about her.  Dogs Are The Best.   Sadly, when I started to get better, Cali developed Cancer and passed.  It was if she held on long enough to make sure I was okay then went to the Rainbow Bridge.  I now know why Dogs have such short life spans – their heart dies out because they give without judgement so much Unconditional Love.  It took me 1 year to finally start looking for another Dog and hit the jackpot, Hutch became my Boy. Trained him to be my service Dog for falls and balance issues.  I used him for 3-4 years, 3 years off and now back on duty as needed.

After 3 years of programming I was starting to see positive results and tried to get back out and start working part time.  I even went to Acting School and Live Improv to work on my speech impediment and poor balance (Side effects from DBS – Deep Brain Stimulation) plus the adrenaline rush of being on stage helped mask the pain and symptoms.   I tried several jobs  failing miserably then just stopped trying.  Looking for purpose I concentrated on raising awareness and monies for research for the DMRF dystonia medical research  foundation. Since 2004, we have raised close to $170,000.00 with our annual Help Find A Cure 4 dystonia Benefit.

2010 I  took a part-time coaching position (9th grade boys – Hazleton) and instantly fell back in Love with Coaching and Basketball.  Sadly, they eliminated my position after only 1 season.  2011 I was lucky enough to coach the 7th graders at Freeland and 2012 became the 8th grade coach for the Hazleton girls.  2013 – Got hired as the head varsity girls coach at Crestwood and continue coaching there.

From my initial surgery DBS 9/29/04, til 1/14/14 my batteries (neurostimulators) had to be changed every year because the voltage was so high. They work – got me back coaching part-time, figured out how to run with a tennis ball bouncing in stride and trained for 2 years learning how to swim without using my legs (Side effects from DBS). Completed  my first Sprint Triathlon 10 years almost to the date of the accident that nearly took my life.  Since then I’ve done 3 triathlons and one biathlon (swim/bike).

Jan. 14, 2014  tenth battery change Roosevelt Hospital, Routine is: depart Hazleton  3AM, Arrive NYC between 5-5:30, surgery anytime between 7AM and 10AM, recovery for 1 hour, lunch with Cathy, on the road home 12-12:30PM,  coaching my girls team at 5PM.  We usually tell no one (parents, siblings, coaches, and most certainly players)  This routine has been flawless for 9 years.  This time, from the night after surgery til today has short of a disaster (pain, discomfort and increased dystonia symptoms.   I knew something was wrong that day.  They gave me no anti-biotics which I was shocked.  Increasing by the day and trying to continue to coach and run a program was becoming more and more difficult.  I called a couple of times to speak with the dr. (No Luck).  Finally got an appointment on Feb. 6th at 7:30.  My wife and I drive to NYC, meet the dr. he examined me for minimum 5 minutes and said, you’re fine just post surgery stuff.  Call me if you spike a fever over 102 or if the area gets really red.   It was already swollen and red, and the wire that connects my battery to my brain was swollen and felt like there was a little man inside my head constantly pulling the wire causing severe pain.  We left NYC got back home and resumed coaching for the next several weeks.  I must have repeated 20 times “dr. there’s something wrong – I know my body and there’s something not right”

Called a couple of times to tell the receptionist that something’s still wrong and tried to schedule an appointment.  That appt. happened on April 1, 2014 (The Irony of the day).  He does the same examination and said, “Now it looks like an infection”.   Nothing changed or looked different.  Now he prescribes an antibiotic, takes cultures from the areas that looked infected (upper chest at location of battery and side of my head where the swelling was prominent.   I asked him if it was ok to go to Dallas for several days because we had tickets for the final 4.  he said it’s up to you, shouldn’t be a problem – if something comes up in Dallas, you might have to go to the hospital.  When you get back we’ll no for sure if it’s an infection and schedule surgery late April or May.  To confirm, go visit this infectious disease dr. to confirm.  We waited 5 hours and with little to no examination, he just explained a little bi about a possible infection.  If I had  waited – I’d be Dead.

During that 5 hour  wait, I texted Dr. Vitek (now in Minnesota) and Joan Miravite (assistant to Dr. Bressman & DBS programmer) relaying all the information.  Their reply was pack your stuff and head to Boston Beth Israel Hospital.  You have an infection based on your text information.  Got to Boston April 3rd, thanks to Dr. Vitek’s friendship with Dr. Ron Alterman, without his help I would not have gotten an appointment for weeks.  Dr. Vitek said just get there as soon as possible and I’ll handle and brief Dr. Alterman with all the details. Dr. Alterman examined me along with his team of Neurosurgeons, Infectious Disease Doctors and Movement Disorder Doctors.  Surgery April 4th.  They were shocked that I wasn’t hospitalized in NYC by my previous neurosurgeon.

Post April 4th surgery, back on all the dystonia meds and a powerful anti-biotic intravenously.  Spent several days in the hospital, returned home, had to have home care nurses daily then weekly to administer this anti-biotic through a pick line in my arm.   60 days  on anti-biotic and dystonia meds.  This anti-biotic causes sever diarrhea and then, of course, I developed an infection in my intestines from the anti-biotic.

Mid-April pick line breaks, administering local nurse, gets to the house immediately and takes pick line out, head to Boston, Infectious Disease Doctors prescribe pills for the duration of the anti-biotic.  Late April schedule appointment with Infectious Disease Dr.  and Neurosurgeon for examination and the discover through our conversation that because I’ve had diarrhea for 85 straight days – another infection and  more medications on top of the dystonia meds.

Getting blood work and blood cultures weekly through home care, next surgery scheduled  for June 19th to replace left battery that was removed April 3rd.  June 19th rechargeable battery implanted (10 year life span).  No complications out of the hospital  and back at the hotel several hours  later.  Feeling good and celebrating with friends and Cathy (wife),  the neurosurgeon called and found another infection.  June 20th the ten-year battery (which didn’t even last 1 day) was removed and all wires including the electrode in the brain.  The Neurosurgeon said he a tiny spot of clear liquid and said the chances are slim to none that it’s not an infection starting, continued with the surgery but had the liquid examined and it was infected.  Because I have had several infections, I demanded they take out all the hardware from the right side too.  3 brain surgeries in 3 days.

I was released after a couple of days, another pick line inserted in my arm to administer the anti-biotic (another 60 day duration).  July 2nd, I spiked  a fever and felt a  lump growing in my right arm pit.  I had developed a blood clot and rushed to Lehigh Valley Hospital for immediate surgery and, yes, more medications.

I  have not been able to drive for over 6 months, taking medications that don’t really help (side effects) are brutal, the physical pain in my neck, shoulders, head and abdomen are off the charts (It’s like waking up every morning into a car wreck that gets worse as the day goes), my emotional state is a wreck.   It’s like going back in time 10-11 years.

19 days til next two surgeries in Boston.  dystonia is a silent sometimes invisible killer at least to me it  is.  I  have not given up Hope but my heart breaks for those whose ailments, diseases, and  situations are far worse  than me.  I don’t complain and, again, want no sympathy – This is just one of many stories about dystonia.

*I’m sure you noticed I never capitalize dystonia because it’s not a proper noun and there’s nothing popular about it – that’s why despite my education refuse to capitalize other things that are not proper but do capitalize other grammatically incorrect words that I find proper.

Since my surgery in Boston, I continued to coach or try to coach basketball because the adrenaline of conducting practices and games made the pain somewhat bearable but as soon as the activity ceased, I came crashing down with pain that words can’t describe.

I chose to resign after building a program for 2 years, not really my decision but the lies, deceit and bullying will never be brought to light because I chose to move on with dignity.  The parents, albeit few, got exactly what they wanted but all I ever did was teach and coach with the same energy and enthusiasm as any team I’ve ever coached.  I played the best players despite their age, last name, parent affiliation and did it with the utmost integrity with what was best for the team.  No names, no complaining and no regrets, I left the program Better Than I Found It!

Now after 6 1/2 months of programming, I cannot drive or shouldn’t because the pain/pulling/spasms/dystonia is off the pain level charts.  It’s so humbling after being able to complete several marathons 2 years ago to a person who just strives to get through each day while trying to escape the pain.  But there is no escape and what’s playing out like a sad country ballad is my life now.  dystonia is a horrific condition and still the most misunderstood and misdiagnosed brain disorder ever.  I know DBS works because it did before but as your dreams, job, health, and life come spiraling down it’s the most challenging of times.  What hurts the most is not what I’m going through but having your family, friends and loved ones seeing you suffer and personally witness what dystonia can do to someone’s Life.  I’m still in the top percentile of those who suffer through dystonia and Everyday I Fight for those who can’t –  This is just to Keep It Real because it is.

Hope this  helps people get a clear picture of my battles with dystonia

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

dystonia: the elephant in the room that no one will acknowledge

For those of you who don’t know me, or have read my blogs – I do not and will never capitalize dystonia because it’s not a proper noun and there is nothing proper about it.  You may respectfully disagree with my opinions, that’s your prerogative but don’t disregard mine because I have dystonia and know how crippling it is.

I can’t remember where I read that dystonia is the suicide disease but it didn’t come from me, whoever made that statement that has as much credence as those positive, inspirational, feel good stories I read and have posted in previous blogs.   I sincerely respect the fact that people share their stories and continue to search for hope, doctors advocates, foundations and  scientists, hopefully using their monies to finding a cure but MORE must be done.

As you digest the above paragraphs, I was recently placed in a hospital for a blood clot that formed as a result of sloppy home care nurse treatment, I will not reveal the name because I would rather not have the aforementioned lose their job but I will make dam sure this person gets a copy of this blog. As upsetting as that was, 99% of the un-named hospital staff had no idea what is dystonia.  2014 and I encounter doctors,  nurses, etc… who have no clue about dystonia. That means the foundations need to step up and do more with awareness – Immediately. If you”re part of a foundation – This should be disappointing, alarming and a wake up call.

Why write this? Because all dystonia foundations need to regroup and rethink how, why and what we are all doing with raising awareness and monies for research.  So, Yes!  I’m calling out all foundations to get your plans and  reevaluate where you are and what you’re doing to help find a cure!!  Give us Hope, Give us something to believe in.  Am I angry?  –  YES, despite the setbacks of 3 infections, 3 brain surgeries, all hardware removed from my body.  To put in LayMan’s terminology – I’m in Hell and beyond – Now I can understand why someone labeled dystonia the suicide disease.  As you read, no I’m not suicidal but I expect more and want all these foundations to not just try but try harder and promote the truths and not just the feel good stories that emphasize the fight and inspiration but seek the Best Scientists, Doctors, researchers, and foundation leaders to exhaust their powers and whatever you’ve done is not enough so either change how you’re going about your business, try something different or seek a new career. The definition of Insanity is doing the same thing over and over and expecting different results.

Most of my blogs are written to give hope, humor and help understand the destructiveness of dystonia. I had the privilege of having enough dystonia relief the past 3 years to return to part-time coaching basketball and competing in triathlons (in a very alternative style but nonetheless completed 5 sprint triathlons)

Advocacy Day – Unfortunately I could not attend because my neurosurgeon disregarded my fear that I had an infection – which I did and had to seek another Neurosurgeon,Dr. Ron Alterman to remove the infected hardware (which was a life threatening situation) Thank God, my first trusted Neurologist, Dr. Vitek arranged my transfer to Beth Israel Deaconess Hospital in Boston.

Batteries out, wires out, dystonia is back with a vengence, taking 32 pills per day, making me a complete zombie, pic line to administer an antibiotic that makes me sick daily and taking blood thinners for the next 3 months, blood tests, Dr. visits, and wasting the majority of my Summer in hospitals as if I were a voodoo doll. I’m not complaining because I know I’ll come back and be stronger-Hopefully but I would be remiss had I not shared the ugliness of dystonia. And even more unfortunate I trusted a doctor who did not listen (Can’t elaborate too hurtful to discuss). This is so alarming to me because if I didn’t have the resources of great Doctors cell phone #’s – I’d be Dead! No exaggeration. Ask questions, read as much about dystonia, get Doctors cell phone #’s and don’t be afraid to seek other Doctors if something doesn’t feel right. The patient has the power to choose – It’s your body and your life – Trust your gut.

I’m trying to stay positive and stay upbeat but I’d be a liar if I didn’t write this blog to make sure whoever has dystonia or reads this – be careful and seek the Best Doctors and/or reach out to others with dystonia. There is a severe ugliness to dystonia that affects people, (depression, isolation, embarrassment, and more serious side effects from dystonia and the drugs that are prescribed).

I hate to be negative, angry and share the Hell I’m going through but felt an obligation to make sure the truth gets out. I am not seeking sympathy or prayers – I feel a responsibility to share and help. There’s a lot here – Digest, reread, and feel free to contact me with any questions/problems/concerns. I am still and will always be an advocate but – Truth must be told – Foundations need to work harder.

Positives (I Think) of getting a DBS infection

Funny/Goofy Things to look forward to if you ever get a DBS infection:
1. Artane (back on this powerful drug – causes severe short term memory loss which can be advantageous in certain situations and in some brief moment(s) you forget you have dystonia, albeit this may only last 4-5 seconds – it still keeps Hope Alive.
2. Being on Antibiotics for almost 2 months – You can eat your face off and not gain an ounce (sorry, I know that’s either gross or may create jealousy – but true).
3. How minor stresses, nuisances or trivial things become so inconsequential (Not sure if any of those words are spelled correctly or make sense but I can blame that on the amount of valium I’m on)
4. I can swim and use my legs – This is my Saving Grace Every Morning! Granted the first several minutes, it’s pure torture and a strong possibility that I can drown but once I get my breathing and rhythm down – It’s Pure Euphoria!!!
However, after swimming for 45-60 minutes the after effects are pretty horrific but I keep doing it because that brief respite of dystonia is worth it.
5. Using Hutch as my Service Dog again and taking him to my Girls Basketball Open Gyms – They Love Him

*June 16th blood work and test
(A) no infection = Great – June 19th Battery goes back in and adios dystonia
(B) Infection = Bad – June 19th Everything comes out electrodes, etc…. 3 weeks of more powerful antibiotics then repeat DBS = That’s gonna create some new anecdotes
** So In closing I’ve already forgot what I wrote – Life Goes on and an unofficial guesstimate from our MS meets dystonia golf t’ment, I think we raised 14,000.00 that we split with MS. so 7,000 for DMRF

Have a Great Day!

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