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?

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…

View original 709 more words

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.