September – dystonia Awareness Month

It seems trivial to write about a rare brain disorder when all around us there are natural disasters, people struggling to salvage their homes, pictures  of hate and violence consuming  the attention of today’s media and a tumultuous political environment but I feel obligated in recognition of dystonia awareness month to share some thoughts, hopes, dreams and the wonders of this misunderstood and misdiagnosed movement disorder.  I also want to represent the dystonia community and give Hope to all that anything is possible!

What is Dystonia?
Dystonia is characterized by persistent or intermittent muscle contractions causing abnormal, often repetitive, movements, postures, or both. The movements are usually patterned and twisting, and may resemble a tremor. Dystonia is often initiated or worsened by voluntary movements, and symptoms may “overflow” into adjacent muscles. Dystonia is classified by: 1. clinical characteristics (including age of onset, body distribution, nature of the symptoms, and associated features such as additional movement disorders or neurological symptoms) and 2. Cause (which includes changes or damage to the nervous system and inheritance). Doctors use these classifications to guide diagnosis and treatment.
There are multiple forms of dystonia, and dozens of diseases and conditions may include dystonia as a symptom. Dystonia may affect a single body area or be generalized throughout multiple muscle groups. Dystonia affects men, women, and children of all ages and backgrounds. Estimates suggest that no fewer than 300,000 people are affected in the United States and Canada alone. Dystonia causes varying degrees of disability and pain, from mild to severe. There is not yet a cure, but multiple treatment options exist and scientists around the world are actively pursuing research toward new therapies.
Although there are several forms of dystonia and the symptoms may outwardly appear quite different, the element that all forms share is the repetitive, patterned, and often twisting involuntary muscle contractions. Dystonia is a chronic disorder, but the vast majority of dystonias do not impact cognition, intelligence, or shorten a person’s life span. Dystonia Medical Research Foundation website

I have dystonia and have been living with it since surviving an accident on 9/25/01.  Diagnosed in the Spring of 2003, I’ve tried all forms of treatments including botox injections, medications (too many to list) psychological evaluations, physical therapy, faith healers, herbal medications, every diet on the planet, experimental brain surgery, and combinations of all the above – There is no cure and different modes of treatment help some but not all.  Doctors, scientists and researchers have discovered many genes and different types of dystonias but still looking for the Holy Grail = A Cure!

Deep Brain Stimulation: is a treatment for dystonia where the doctor drills a hole or holes in your skull and implants electrodes in the base of the brain.  These electrodes are then connected to a wire that runs down the neck and connects to a pacemaker (battery) in the chest area.  This procedure can take as long as 10 hours (patient is awake).  In my case I underwent the procedure in 2004 (Experimental by FDA standards) at the Cleveland Clinic while being filmed for the PBS documentary “Twisted”.  My pacemaker battery had to be replaced each year for 10 years, the last resulting in brain infections, intestinal infections and a blood clot.  After 2 more brain surgeries in 2014 and 2015, I was given a rechargeable 8-10 year battery.  I charge my battery 10-20 minutes per day, hence the blog name “Battery Powered Person”.

Dystonia affects each person differently.  In my case the right side of my body is symptomatic.  The cramping, spasms, contractions and painful postures can be debilitating, however, invisible to the general public.  dystoniacs have a way of hiding, masking, and using tricks/cues to slow down and hold the symptoms in check which are not only embarrassing but painful.  I’ve become a master at these (holding the head; touching the cheek, ear, chin; wearing a baseball hat (Which also covers the huge scars and holes) raising or slapping hands and/or feet; constantly adjusting posture, neck head are just a few in the arsenal.  Exercise is also a method to curtail symptoms, albeit brief.

Exercise and dystonia:  This topic is under scrutinized debate because exercise is the fire that ignites the wrath of dystonia  which ultimately exacerbates the symptoms.  I’ve discovered that bouncing/squeezing a tennis ball while running slows down the avalanche of pain and spasms.  An innocent fetch with the dog sparked this discovery and started a one block jog to a half marathon and hopefully the NYC Marathon on Nov. 5th.

After completing a 10 mile race this past weekend in Dewey Beach, I was asked by several people about the tennis ball.  “You showing off”,  “How many times did you drop the ball”,  “What’s the deal”,  “Is that to prevent boredom”.  Some people get upset, some laugh, some stare, some encourgae but it’s hard to stop and explain to everyone.  I bounce/squeeze a tennis ball because it slows down the spasms and prevents me from losing my balance and falling.  It doesn’t make running easier.  The first 2-3 miles are complete torture because of the painful spasms, twisting and cramping but something magical happens if I can fight through this .   Whether it’s the rhythmic bouncing of the ball or the  swinging arm motion along with the breathing cadence or all three, there’s a slight reprieve of dystonia that lasts for several miles.  This is my running drug!  Imagine your body in a vice grip and twisted for most of the day and suddenly there’s a brief respite – That’s what I feel!!  Something even more magical occurs after the race, I go through a period of no dystonia. This euphoric feeling  lasts between 10 -30 minutes (Probably a combination of runner’s high and endorphin rush).  However, it all comes crashing down when the stress of exercise awakens dystonia and it’s ready to attack again.  The day after is extremely challenging but there’s always the hope and excitement of taking that running drug again!

Swimming is the most pleasant exercise for dystonia because the water buoyancy alleviates most of the pain while biking is the most painful.  Which begs the question, why exercise and go through the pain?  Answer: It hurts more not to try than it does to exercise plus the brief escape is the rainbow that I keep chasing and I still dream of a life where dystonia does not exist.

Dystance4dystonia is affiliated with the Dystonia Medical Research Foundation and helps promote awareness, gives hope to those afflicted, and raises funds for research so a cure is in the near future!  I’m participating in these races to help the foundation, ignite the dystonia community to action, and challenge myself to stay motivated, active, and test the boundaries, if any, of dystonia.

This year we will not be having our annual Help Find A Cure 4 dystonia Benefit which has raised over  $191,000.00 for the DMRF.  I was invited to join the team of runners for the NYC Marathon which grants admission to the race as long as the participant raises $2500 for their charity (Dystonia Medical Research Foundation).   I will “Run For Those Who Can’t” on November 5th bouncing the tennis ball and raising awareness about dystonia!!



dystonia Awareness – klonopin FREE!

September is dystonia awareness month and I want to help, share and give hope to people suffering from this horrible condition. It’s been almost 2 years since I’ve written a blog about my journey with dystonia partly because of the overwhelming challenges of brain infections, 2 more DBS surgeries and the frustrations of reprogramming the electrodes in my brain.  During this time I had to resign from my head coaching position, manage all the medications/side effects and live with the challenges of a pain level that I can’t even put in writing but I also had some amazing discoveries.

Klonopin is one of the drugs prescribed to treat dystonia and it does help.  The short and long term effects, however, are quite alarming.  I’ve taken klonopin for about 13 years and tried several times to stop taking but either my body was addicted to the drug, the dystonia symptoms were too hard to handle and/or the withdrawal side effects were too powerful so I kept failing.

I made a decision to start klonopin tapering in January while spending time with a long-time college buddy who was going through cancer treatment.  My friend Tom was fighting lymphoma and getting chemo while trying to workout and prepare for a road-trip celebration to The Masters Golf Tournament.  We would talk, exercise and discuss challenges of both conditions 4-5 days per week.   This inspired my decision and motivated me to stay the course.  I did research, consulted my Doctor and read extensively on the challenges of this endeavor.  Once I was klonopin free the first 3 weeks were more miserable than I could have ever imagined but the research suggested that the body and mind will continue to get better so I pressed on.  I’d be a liar if I didn’t write how extremely difficult it was both physically and mentally.

After a month my body was adjusting and surprisingly my dystonia symptoms were improving.  Today, September 12, 2016 is day 201 – klonopin FREE.  dystonia is still there but the good days are more frequent and the almost good days have become somewhat more manageable.  Not sure if this path is for everyone but having gone through 3 DBS surgeries and 11 battery changes – I decided eliminating medications was better for my body.

My friend Tom made it to The Masters, is cancer free and back to work!!  I had to resign my head high school coaching position in April 2015 but improved enough to try again in November 2015  – coaching middle school girls and boys basketball.  March 2016 I was healthy enough to apply for several head coaching jobs including the first college position in over 13 years.  Unfortunately, I didn’t get any job offers but my health is continuing to improve and Hoping for an opportunity to share my passion = Coaching Basketball!

My body is operating on a daily-rechargeable brain-battery and I still run with a tennis ball but I don’t have to bounce all the time and managed to run several 5k’s and a biathlon this Summer while wearing my dystonia shirt “I run for those who can’t” and my dystonia hat “Freedom of Movement”.  Hope this helps inspire, educate and motivate those suffering from dystonia to keep searching, trying and raising awareness about this brain disorder so a Cure can be found.

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

My Mission

Mission Stats updated 1/8/2014

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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