Life Straight Up, Hold the Twist.

There are people that we meet along the life’s journey that are supporters, coaches and when are really lucky, truly inspirational beings.

I have been so fortunate to have incredible people come into my life from professional mentors (Bob Cooper, Kristi Hedges and Greg Stock) to athletic coaches (Maureen Polley and Vonnie Gross) and in the last few years, running mates (Dave Guzzio, Hannah Christopher, Nadiene Freidrich and Kristina Hanrahan).

A few weeks ago I met Pat Brogan and I want to share his inspirational story and build awareness for Dystonia.

Prior to September 25, 2001, Pat was a college basketball coach-aholic and a work out fiend, running and biking 5-7days per week and on the verge of becoming a head division I basketball coach.  He started increasing his workouts to train for an ironman and was just learning to swim.  On his morning ride to the Easton YMCA he heard a speeding car and felt it hit his left shoulder; unconscious for 20 minutes he thought he was dreaming.  He woke up in the trauma center naked with tubes all over the place (his mom always said to wear clean underwear, not good timing for going commando) a priest stood over him and asked for his closest relative. With a concussion, brain & spinal contusion and a messed up face; Pat recovered and was back coaching in a few days.

Over the next 16 months, Pat was experiencing subtle changes in his body which started with neck pain, searching for doctors and what was going on proved that he was either depressed, overworked, or on the phone too much.  He took a job a Penn State and the symptoms escalated.  After six doctors he was diagnosed with dystonia.

The Wikipedia states: Dystonia is a neurological movement disorder, in which sustained muscle contractions cause twisting and repetitive movements or abnormal postures.[1] The disorder may be hereditary or caused by other factors such as birth-related or other physical trauma, infection, poisoning (e.g., lead poisoning) or reaction to pharmaceutical drugs, particularly neuroleptics.[1] Treatment is difficult and has been limited to minimizing the symptoms of the disorder, since there is no cure available.

Pat was in constant pain and had spasms 24/7.  The only relief was swimming, so typically he was in the pool three times a day.  He tried every pain medication, went through the protocol for dystonia and had Botox shots for one year.  Pat was back at home bartending and figuring out what was next.  He was volunteering at Georgia Tech because the Emory Clinic had the best doctors for dystonia.

(Side note – the team went to the final four had the most wins in school history; John Feinstein who wrote the last amateurs and Washington post writer; published a big story on Pat’s travels with dystonia to the final four).

After the season, he couldn’t coach any longer because the symptoms were too bad.  It was time for the last resort; experimental brain surgery that would become a PBS documentary called ‘Twisted’.  See the 8 min screening here: http://www.youtube.com/watch?v=2M_nyIfgFss

In Pat’s words, “Why not; they didn’t realize that my life was about to crumble.”

Pat was hired at a local high school as head coach one week prior to open brain surgery. On September 29, 2004 he traveled to the Cleveland Clinic for the 9 1/2 hour brain surgery, one week later the doctors connected wires to his brain from pacemakers in chest and turned the batteries on.  Instantly better; Pat was pain free and the spasms were eliminated.  One week later, side effects started and the dystonia got worse.  He now traveled to the Cleveland Clinic two times each month to experiment with programming. The dystonia continued to get worse, Pat was now stuttering, stammering and couldn’t run or swim.  Pat had zero coordination, a result from brain stimulation, he couldn’t coach and he couldn’t hold a job. He was trying to reteach himself how to swim and then became so frustrated that he took three years off.

Pat was ready to try again and he experimented with turning the batteries off which allowed him to swim, but the dystonia would take over after a few minutes. Pat tried acting school to work on speech and balance and actually liked it. The documentary came out and it was a success.

Pat was having his batteries changed every 11 months. They would open his chest and pop new ones in. That was when he started toying around with his remote, figuring out how his body reacts and getting off the plethora of narcotics he was taking (which took two years).

He then discovered his right battery controls his speech and balance, his speech was back.  He figured out he could run by bouncing a tennis ball.  By turning the right battery off, he was unable to use his legs but could swim because of his upper body strength.  Biking was always easy; he just has to hold his head with one hand.

After 10 years, almost to the date of the accident, Pat completed the Dewey Beach triathlon. Amidst broken noses, collapsed lungs, facial lacerations due to falling, five knee surgeries over the past 20 years, Pat is still biking and swimming 5-7days per week but only runs on race days.  He is coaching junior high boys/girls basketball.  Pat summarizes it all with, “Life is great!”

What do I take from this?  You need great people in your life.  People that offer guidance, friends that listen and support you and your inner circle that stands by you no matter what. At the end of the day, however, it all comes down to you.  You are the only one that can set personal goals, take action and accept responsibility.

A few of us are headed to Dewey Beach, DE to cheer Pat on this Saturday as he competes in the 17th Annual Dewey Beach Sprint Triathalon. Borrowing the sign off from Lysa Stylski (author of Living with Lysa http://lysastylski.blogspot.com/) – Join us!

Want to support Dystonia research? The 9th Annual ‘Help Find A Cure for Dystonia’ benefit will take place December 21, 2012 at the Hazleton Elks Club. The party will be from 6-10PM and will include a sports memorabilia auction, 50/50 and tricky trays. To date, Pat has helped to raise $150k, of which 100% goes to Dystonia Medical Research Foundation www.dystonia-foundation.org

You can reach out to Pat directly for info on the annual benefit at patbrogan13@yahoo.com

Food pick this week: thanks Kim Chemacki for the intro to Texas Cavier! http://www.food.com/recipe/texas-caviar-181378

Best,

Alison

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About alisonguzzio

A marketing and public relations veteran, Alison Guzzio has directed projects for a range of high-tech, pharmaceutical, security, ecommerce, manufacturing, chemical, global trade and broadband companies. Strengths include positioning companies to maximize visibility among key stakeholders such as media, investors, channel partners and customers. Alison has a strong understanding of business objectives and she effectively translates this into results for her clients. In addition to her experience managing the demands on emerging companies, Alison is skilled in taking products from conception to roll-out, developing creative marketing plans, generating media coverage along the entire product lifecycle and leading brand awareness campaigns during critical growth stages.
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2 Responses to Life Straight Up, Hold the Twist.

  1. Monica Thomas Dominguez says:

    wonderful story Alison. The brain is so complex and the percentage we understand about it is almost nothing. Glad Pat took it upon himself to find out what could help him…it is so important for people to take possession of their illness or therapies and learn about them and through them. Professionals alike can learn from people like Pat and hopefully his doctors and therapists will learn from him and cherish any information he can give to help people in his situation. Good luck in your endeavors!

  2. This is the kind of story that makes you pause and realize that every day is a gift and what you put into it is what you get back. Thank you for sharing this inspirational story!

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