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