FINAL THOUGHTS

No, the Greek has not returned to give us all a look from the other side.
Instead, he has left a void, huge and unfillable with the trivia of this world. Last night, we went to see a local version of Jesus Christ, Superstar.  I cried through
every song.  Why?  George was" just a man,".  Sound familiar?  But, his suffering and his desire to have this cup taken from him was too familiar in every word of the songs sung in that play. Yes, he was just a man, but he suffered, was rejected by those who before had befriended him, by family that should have enclosed and comforted him and  in the end, his choice was preordained.

I was going to tell you of how MS devoured him.  Of all the terrible symptoms that he endured with a calm spirit, an almost unearthly calmness that was so alien do a doer, a man who got things done impatiently, who never waited until tomorrow.  Well, he got a hard lesson.  He found that there are things you cannot do, no matter what your strength of will or resolve. 

I can continue for many pages, revealing so much about who George was, the man who thought he was very simple, not deep, not a thinker.  His blog and his endurance of the last five years gave us the truth about who he was.  I cannot be more eloquent or profound than he, himself was.

So, I write these words as the last that will be on this blog. As he said, time will pass, life moves on, last years leaves drop, become the mulch for the next spring, and then are forgotten.  He accepted the  flow of life.  He did not accept the injustice of it, or maybe, in the end, he did. 

I will leave it for you the reader, to mull over all that he said, and decide.
After George died, I found the attached picture folded in his wallet.  It speaks volumes of what finally drove him to make his personal choice. 

As his Mother, I will hold him in my heart each day and night, trying to preserve
the memories that I know will fade with time.  I am writing my thoughts on my own blog, Xaidw Speaks.com.  It is dark and sad, and I do not know if it will ever change.  I do know, that for the first two weeks after his death, I could feel him close by.  Now, it is as if he has left, disappeared into the atmosphere, gone completely.

I know we will all move on, whatever that means.  His words, though, have influenced many of you.  You have told me and commented on his blog.  He would have been surprised, but secretly gratified.  After all, he was a simple man.

The Tipping Point

     Today is the end of a journey. A journey that unless one lived in my body one could not even fathom. Although its not the end most would desire, it is to me. See when I was diagnosed in the year of 2007 I was the first to the front lines, fighting with fury as did Leonitas and the 300 as he pit bulled the Persians at The Hot Gates. But even Leonitas knew when his time had come, and like him so do I. My Papou Andy was a warrior. I have always felt as if I was the mimic of him. A Greek immigrant he lived until his late 90's when he would tell me, "yorgos god dont need me and the devil don't want me!". He like Leonitas was at the end of his journey and after 7 days of starving himself he went to be with my yiyia milly, somewhere up there , as tirelessly he had enough, and as crude as it sounds I will always admire him.
     So my journey. Fourty four years, 39 great, 5 a living hell, as I along with my family and friends have watched with fear the degradation of my body, my physical body. Sure I have heard it a million times ms doesn't define you, but ya know what you can keep that shit, as I lay here after my care taker maneuvered me back and forth wiping and cleaning as I have become individually insufficient. There are individuals that really are amazing, guys like Christopher Reeves, and even my buddy Marc Stecker "kazmo" I call him. They seem to trudge along no matter how shitty things are, using their deficiencies as others admiration. I have also performed this way, but I didn't sign up for that and although I have fought like a crazy madman, I refuse to allow my condition to become to the point where my faculty is in a state of confusion or cognitive and physical deterioration has put me at that complete care of others.
       I am at my tipping point and as I write this from the bed I have slumped in the last 2.5 months days in my parents front room, I declare today the end of my journey. Call it what you would like, declare it as quitting or surrendering, but unless you personally have lived it then shut the hell up, because when you are done reading you will get up and go to the fridge, or jump in you car, neither of which I can do. Don't judge me, I said from day one I would give it hell, but I will be damned if I plan to be the poster boy. My choice. This has been a rough week. Failed baclofen pump relief attempt, staples fresh like spring flowers, no relief and instead two ugly slices in me and magnified weakness and paralysis. Life for me is about washing the truck, cutting the grass, shoveling the snow and at this stage none of these delights may I physically partake.
      Living away from my former bride of what would have been 19 years this week, and separated from living with my four beautiful children since December has been equally devastating, and something I thought my family would never be a product of. I am however, thankful of what a wonderful caring mother she is, and knowing the kids are in the best hands is an immense relief. However, life has taken some crazy turns, and instead of things gelling, they have become unglued. Imagine being in bed incapacitated and as your caretaker is care taking, you are on the phone answering questions from your divorce attorney. Imagine.
      The woman in my life who is the most amazing being is my mother. Through thick and thin, rain and shine, snow and ice she has lifted me both literally and figuratively for a long long time especially when I needed it most. Her love and support truly defines relationships between a mother and son, and I can picture her sitting beneath the maple tree, pretty hazel eyes, long gray hair that she is saving for some darn charity, and a smile at me that reminds me of love and love only, without prejudice. I love you so much.  You deserve piece and treasure from the heavens for what you have done for me.  For my parents I am truly ever so grateful.
     My sisters are both amazing , and as I know they'll be devastated, I want Dana to know I recognized her eight million times she has reached out to me, and usually receiving nothing back just because I'm too damn sick at the time to return the favor. I love you both.
     My boys Niko Charlie and Mikey,I love you more than the world, please respect and admire my good qualities, and show the world yours. Niko, the show must go on, please dedicate this one to me, give it your best ever, and use me as the catalyst that drives this one." Bye bye big "g". Charlie the
great debater will be the countries finest attorney, and Mikey you melt my heart with your authentic love so real and true. Im getting the ranch together.
      My daughter, the princess, Stacia, your face so gorgeous engrained in my brain, the coolest person I have ever known I have loved you since the second you arrived. Butterfly kisses tonight. Dad, fix the damn spinal stenosis, and contrary to what an other has precluded, you know how much I love you, from little league coach to council.
     To Uncle mike I send huge kudos for what you've taught and will continue to teach my son your nephew Mikey. What you have done for him is beyond what I ever dreamt and for this I am indebted to you.
     Once the Spartan Army had been exhausted, the country's reinforcements took over, as the soldiers finished the job so will my predecessors. Life goes on. People move on. They love, live, grieve, and so on. It's like the fall leaves on the ground raked and mulched, ready for next springs growth. Those old leaves will be forgotten about and next season so will the new ones. The fact is they all had their journey, flourished when they could, and fell when it was time. When they emerged they gave it all they had, soaking in the spring rains and the summer sun and taking their fall when they hit the tipping point
     . I have hit the tipping point and all I care to conclude is see ya on the other Side, washing my truck, cutting the grass, and shoveling the snow. This is who i really am and what contents and completes me. Excuse my pride and dignity as it is what defines me.  If I have to expose my anus to one more nurse for impact ion relief or have to go through another straight cath I will puke.  See this as a relief to a proud sufferer as opposed to a defeat...the tipping point!
      There is one gripe I would like to share.  For three weeks I spent post surgery and for the days and months suffering that seemed so endless, is it that difficult for friends  ànd love ones past to send a text, a call, a letter?  I don't want to be patronized and I know you can't make your heart feel something you dont but what are we robots?  Are we all just so caught up in our worlds we cannot fathom what spending 24 hrs in bed must be like enough to just say hello I am thinking of you? As far as I am concerned this world is filled with selfishness and hypcrocy.  As well as a whole lot of BULLHIT!

MS-The Dinasour In The Room

     Soon after my last post upon return from three weeks in the hospital, I worked diligently daily to provide my core with enough strength to sit upright.  The first move, the toughest by far, was getting out of bed.  Sounds simple right? Notta.  Imagine  lying on top of a gorilla and heaving you both out of a supine position.  Whilst red hot poker sticks are being jabbed into your lumbar.  This is just a smidgen of what my morning entails.  Not including the dignity I have lost to good hearted caretakers, but I was trying to build up this strength for not only obvious reasons, but to be able to withstand a flight to Florida.  My parents have a home in Melbourne, and I go where my "caretaker in a cast goes." Period!  This is the hand that has been dealt and I really haven't a choice other than to play it out.
     Once out of bed and feeling every tortous movement, I was gate belted and assisted to the wheelchair, equipped with the morning icepack and lumbar support, a homemade creation, then wheeled over to the stairs where I would sit backwards while holding onto the stair above and hoist myself up 5 stairs one by one resting on each stair in a sitting position.  Now you're cracking up because who can't simply sit? Me. That's who. This glorious disease has weakened my core to the point I cannot sit unsupported .  The three surgeries provided also much needed additional pain and influence over my condition! Thanks to the generous amount of spasm and spasticity and the failing of oral baclofen it really left no choice to fix this baclofen pump, which by the way will be covered in another blog as I feel Medtronics misrepresents the pump entirely and can be included in "Big Pharma!
     Anyway, on with the story.  Two nights prior to the flight I was shitting bricks.  How can I go to an airport, sit, wait, go through security, sit, wait, go to the terminal, sit, wait, and then get on one of those horrible airline aisle chairs that we lucky handicappers get to ride strapped in like a piece of meat and banged all around, when I can't even sit upright?  Wow that is impossible, as I lay perplexed and pained I received a text from Kim who has been in charge of keeping my hygiene at high standards with a wonderful idea her and my sister conjured up.  Sleeping in a hotel room next to the airport and cruising to the terminal like O.J. did in that Hertz commercial years ago, well not exactly, but the idea could cut about three hours of sitting time out, and leave me just enough for the flight.  I managed by the day of the flight to build up three hours of sitting tolerance. I am not talking about comfortably relaxing on the sofa, I am referring to three hours of digging so deep into the depths of my core and mind over matter compartmentalizing the pain.  It was either get to Florida or be stuck in the house in freezing cold icy weather every day with poor Mom who was on her last nerve.  I wanted to stay because I figured a few more weeks and she would put me out of my misery anyway, as she hates winter more than anyone I have ever known!  The other option was a 24 hour ride in an RV bed.  No thanks!
   So to spare a ton of details lets fast forward to the plane where after taking the shitty ass isle chair and being slung into a seat the 757 taxis back after an hour of boarding.  My calculations tell me I had enough in me to get to Orlando and I will lay in the back of the car to the house.  However, I neglected to factor in the mechanical problem with the left engine that burned two hours of my available three, and forced a deboarding of the plane. Yes once again the black cloud prevails, and my three hours was up.  It was back in the aisle chair and return to the terminal where my only hope was western medicine.  Yup, Vicodin , Valium and the like, until something wonderful should appear, the aisle chair guy and his compadre with news of the availability of another plane, and right away! Oh there is a God I proclaimed, and before you knew it we were on board and on our way to sunny Florida, where the heat intolerance will have me right back in bed! Oh yes there's always a trade off  with MS and its about the lesser of two evils.  At least there is no snow or ice and curb cuts are everywhere allowing wheelchair accessibility.  In this case it was get out of dodge but still take the dinasour.  Where was I to find three more hours in this body? The dinasour story ran through my mind :
      A certain family had started putting up a nativity scene in their front yard. All of them were carrying out the little statues to put in the nativity scene. Finally everything was in place - Mary and Joseph and the manger and the baby, and angels and shepherds and all the barnyard animals.  Then little Scott came out carrying one of his favorite toys, the figure of the fierce Tyrannosaurus Rex, king of the dinosaurs. It was one of those plastic figures that you inflate, and in comparison to the other figures it was an enormous thing, towering over them all, and certainly not something to have in a nativity scene. The Dad said, "I tried to tell him, ‘Scott, you have to take that back because it doesn’t belong there. Dinosaurs existed thousands of years before the baby Jesus, and it just doesn’t belong in a nativity scene.’ "But little Scott insisted, so they finally put it there behind all the other figures - a fierce dinosaur hovering over the manger and everything else. Then he said, "As we stood back and looked at it, we realized that maybe that dinosaur says more than we realized. For over each of us there is this menacing character that threatens to rob us of all our joy and peace and cheer."
     My friend and pastor shared that story with me.  His take is that the baby in the manger is stronger than any dinasour in our lives, but from my perspective T-Rex is kicking my ass, and hanging over me with a grip that feels much stronger than any higher power.  But then what the hell do I know, accept for the fact that somehow, someway I survived the travel (7 hours upright) with that big nasty T-Rex!  I have tried several times to replicate sitting that length and cannot come close.  After two hours in my special chair I am back in bed.  Maybe Father Teodor has a point.  Maybe that day that little baby in the manger helped me to declare victory!?  I just  hope that little guy continues to follow me as well as my family and that he did'nt take the return flight back to Detroit, if he really even was on board afterall!?

 

 

When MS Takes A Stranglehold

    Well hello!  Yes I am still around, but in a bit of a capacity of turmoil and deficit thanks to the riggers of MS.  After the fourth attempt to refine the intrathecal baclofen pump, surgery rendered me incapacitated as I spent a very long three weeks in St. Joseph rehabilitation working as diligently as possible, but leaving in pretty much the same condition as the admittance.
     MS is a mean, ugly, and variable disease.  Aside from personal and emotional turmoil, I have spent several weeks in the fetal position in bed as I recover from surgery and disease progression.  Slowly and methodically I am trying to work on sitting upright, but the etiology of this demon has robbed me of something as simple as sitting upright.  Yes, simple.  Not for me however as I strive for an hour or two upright.  It's horrifying.
     Bits and pieces to get you all caught up:
Complete overhaul of pump and newly revised catheter...
Lots of watching television
Crosswords
Pandora radio
Texting my kids
Watching movies
Bed baths-so humiliating
Fortunately I have plenty of food, and great caregiving, but recently encountered an event that left my most prize possession, friend, and caretaker in a precarious position.  It was 7:30am and business as usual Mom walked down the ramp outside , built for me of course, to retrieve her liberal rhetoric The NY Times, when suddenly I was awakened by her cries for help.  I heard a thud, and the emotional distress from the ramp parallel to my window.  As she was retrieving the paper, she hit a patch of ice and went heals over head and head over heals.  As I lay there a "functional paraplegic" listening to the cries of my mom, a million flashes took over my mind .  The old me would of had her over my shoulder and inside within seconds, the new me lye there as my heart felt as it was being torn from my chest.  I could do nothing, and whereas the story is not about me, it surely helped to solidify the damage this fucking disease has insulted me and devastated us all with its effects.  It's difficult not to take responsibility when for it not had been for a pump refill that morning she would still be in bed.
     The ambulance soon arrived and carted her off as my hired and caring caregiver Kim graciously took me to the appointment.  My incredible and loving sister Dana flew in from Florida in what seemed like minutes along with my father who was in Florida preparing for surgery as he battles spinal stenosis. My older sis was stuck in Chicago otherwise she would have as we'll.
     So, whereas I wish I had better things to report, this is real life, the horror, the randomness, and the reality of a family giving up on trying to figure out the answers, but coming together and following the notion if you're going through hell, keep on going.....that's it for now as I sign moms bright orange cast consuming her broken ankle.

Why Do Doctors Say Stupid Things?

     About six months ago I went to see a neurologist.  Not just any neuro, this guy was Chairman of Neurology at a major hospital and college,  and had been for umpteen years.  I can imagine the various degrees of ms and it's complications that have made it into his office.  I anxiously counted the days until my appointment only to conclude afterwards there needs to be a "jump in my body button" that I can press when a neurologist rolls his eyes to patient ideas and recollected once again just how immune these guys are and how they don't get it, especially when asked an opinion of any therapy outside of the "box."
     I had waited several months to visit this neurologist.  Unless a patient with ms is having a severe life threatening attack, then it is typically hurry up and wait.  Imagine having a cut in your finger requiring stitches and having to wait a month to get it stitched.  Naturally by then it's too late and hopefully it will heal on it's own.  Now on a grander scale imagine being unable to walk, and waking up one morning and feeling that the paralysis in your legs is creeping upward above the waist.  Panic and anxiety quickly control your mind and the sensation becomes more pronounced.  Your stomach churns, your palms sweat,  your eye twitches, the numbness in your already numb hands increases, you lay in bed unable to jump up and grab the phone, horrified you watch the clock from the current time of 6am until the neurologist office opens at 9am. Youkeep your cell in bed for emergencies and start calling at 8:30 just to see if someones in, but the answering machine tells you nobody is there and explains that  if it's a life threatening emergency call 911.  Hmmmmm.  Depends who is defining life threatening, considering you can't even get up on your own it sure as hell is threatening and not much of a life.
     Finally 9am rolls around, you dial repeatedly but keep getting the machine.  Now feeling hopeless and helpless you continue to hit the redial finally connecting, but only to find there are seven callers ahead of you! What! Anxiously you wait your turn, a human finally answers, she is chatting with a colleague and finishing a laugh as you acridly explain the whole situation.  "Medical record number please" is all you get from the other side.  Medical record number?  Please I am upside down with fear and just want to get in there, thinking for some crazy reason that the neurologist can actually help you.  Your first mistake.  "Lady please can you find me some other way?" "Name and social security sir?"  This is when I want to hit the button.  Jump inside lady, feel paralysis then let's see if you can feel me and try just a little harder you machine.  "Ok, I have found you, " callously she remarks.  "What seems to be the problem." Again you repeat the entire episode, as if the clerk is going to help, you picture in your mind telling the story to a tree outside and getting more of a response.  Without as much as a single sympathetic word you receive a " hmm" let me see.  "Doctor has an opening November 23rd!"  Doctor, I love it , as if he is some iconic world renown perfection.  Can't he just be The Doctor?  Great a month away.
     The fact that you have this creeping paralysis is NOT an emergency.  It is unfortunately standard ms progression, and is no shock to anyone other than you and those close to you..  So you book the appointment for a month away, hang up, and lay there, immobilized, alone in your thoughts, horrified, still paralyzed, wondering how you will get through the month, again believing, tricking your mind that you will actually get some relief when you finally do see the neuro.  Welcome to ms, the incurable, seething, loathing, frightening, cowardly, life sucking disease and it's medical society associated with it.
     So back to this neuro, I wait months to see.  "Doctor" will finally see me now.  The anticipation is killing me as for some odd reason I think to myself this is the guy that is going to help me, momentarily forgetting that 150 years has passed and aside from a pipeline of  symptom management fallacies and expensive drugs with side effect profiles a mile long the ms train keeps chugging along.  During the appointment the Chairman of Neurology ensues his run of the mill standard neurological exam, equipped with a $.30 safety pin for numbness testing purposes, all the while formulating his theorem before I am allowed to tell my side of the story.  "Please wait until I have finished my examination", he remarks.  Can't this guy do two things at once I think to myself.  Squeeze the fingers, tap the hands, follow the finger, same old shit.  Finally his interpretation reveals a stroke of genius.  The ms is advancing and there currently are no therapies for the progressive form of ms.  Only symptom management, again the biggest sack of bullshit in the world.  I would call it sedation rather than symptom management.  Take four of these every six hours and stare at the wall while someone wipes the dribble from your lips.  Body button please.  Jump in and feel what I am feeling, and then tell me this .  So I throw out a few "alternatives", outside of the ms protocol. Things like stem cells, CCSVI, LDN, antibiotics.  Wadda ya think?  No sooner than the words left my mouth, Doctor gave me the old librarian look.  You know the one where the eyes glare at you above the glasses, chin at the chest.  "None of these theories are proven, for example we know very little of stem cells, and,there is the possibility of growing a bone out of your chin or something!" WHAT THE F I think?!?!  Three cheers for the chairman! Genius!
     This Sultan of Neurology went on to tell me how in 46 years he has never seen a patient in the advanced stages make recoveries and only very subtle improvements.  Boy what amazing encouragement, and how dare you say something so negative and hopeless to a 44 year old man clinging to any hope he can find, his golden years stripped from him by this thief ms.  Where is that button for this mother f'er.  Feel this!  Feel what I am feeling then say that!
     So back to the car, tail between my legs, doing my best not to get depressed, letting out a cry and some obscenities, I think to myself  how a Dr can feel good about himself, saying such stupid things and other than a handful of scripts, giving me the same old nothing.  I guess being in retail my entire past working life, and not allowing a customer to go without being satisfied, I cannot imagine such shitty and worthless customer satisfaction.  Worse off I am not talking about a ladder here, I am talking about life.  Human life, feelings, family, survival, and all that goes with it.  Just getting to the appointment is a daunting task, getting a kick In the ass is so inappropriate
     Hope is all we have.  When told that there is really "nothing" to rectify this paralysis, it is easy to just say the hell with it and give in.  Giving in is not an option.  Let God ultimately take your breath away. Not "Doctor."  As difficult as it is remain focused on a goal, on the ultimate prize, keep going and be thankful for what you can do.  I have to remind myself this all the time.  I slip into the suck every day, and somehow comeback, but need reminding constantly.  I tell ya, it really hit me in the face when Dawn, a reader from North Carolina, a mother and caretaker for her paralyzed son who cannot talk reminded me how lucky I am to be able to speak.  Think about that for a second.  Who doesn't take speaking for granted?  Next time you blurt something out, think about how lucky you are you can talk!  As crazy as it sounds.  She would love nothing more than to have a conversation with her son.  Sure I get my share of bedtime, but at very least I can explain to Mom and Dad how I feel and have a conversation, even if it is from bed or whatever.
     If you haven't already, start appreciating what you can do and what you have, ignore hopeless chatter from the medical world and for God sakes as Jesse Jackson put it so eloquently, KEEP HOPE ALIVE,
      I leave you with a video of my friend Brock, who was told by his doctor that he would never walk again after a horrific accident left two dead including his father, and paralyzed Brock from the waist down.  Living on faith, determination, grit and super hard work, good friends like Mike Barwis who believed in him, Brock will be strolling down the aisle in the near future, regardless of what "Doctor" said.  You are the man Brock.  By the way, he has come even further since this video, much further and can walk unassisted several hundred feet.  So there!

Dont Wait It May be Too Late

     How many times do you come home from work, or for you homemakers at the end of the day exhausted, spent, beat up, wanting relaxation and peace?   It's only normal to feel this way.  I have experienced some alone time in the last 9 weeks where I have reflected so many experiences I would like to share where I felt just that and now this notion takes on a whole different meaning.
     Considering my last two surgeries have flipped upside down what little quality time I had during the day, my new day has been filled with the experience of either lying in bed or a short time in the lazy boy chair.  Either way it's about  90 percent sedentary.   To bring you up to speed, I am having great difficulty sitting upright due mostly to the MS etiology process, but to add insult to injury the two surgeries to get this damn pump working required cutting through muscle and cartlidge in my low back, thus creating a "pseudo" exacerbation and adding to the weakness in a profound manner.  No driving, sitting in chairs, long scooter rides at this time. Sitting creates a strain on my spine that in turn creates incredible pressure that in another turn forces me horizontal.  AS easy as it would be to just say the hell with it, I am doing the converse and I  have entered into a rehabilitation program with the hopes I can regain some fuction before the next surgery, yes another slice in my back to either repair or pull this pump out of me, haven't decided as making it through today is my main focus.  So rehabilitation requires great discipline.  I mean you want to talk about "manning up" as some ignorant to the term put it, this goes way beyond.  Imagine red hot poker sticks up your back while at the same time weakness and the ill side effects of medication transform you into a feeble, doped up, painstakingly exhausted bag of bones being put through a series of exercises that would hurt if there wasn't anything wrong with you!  All you can think of is getting back to bed yet somehow someway you just keep pushing almost in a divine manner.  Imagine, exercising with a belly full of muscle relaxants and pain relievers, its contraindicated!  Either do or die.
     Anyway back to my point.  You just get home your whipped, ornery, hungry and tired and your kid says he wants you to go ride bikes.  Sure you are perfectly healthy but your tired so you kinda give him the old"gimme a few minutes" until he is on to something else and you get your peace.  Let me educate you on what peace is.  Peace is laying in a bed that faces the outdoors and watching through a venetian blind a father your age riding his bike and his little guy behind him admiring him like he is Ghandi or something.  Not the kind of peace anyone would want to or should have to ever experience.  This peace, a result of illness, of lack of movement, of a relentless disease that comes out of nowhere and gives you more peace than you can imagine.  Peace is intentional, this type of peace is not peace at all. It's horrific, involuntary, forced, and fighting it only makes this "peace" worse.  It's not peace it's persecution.
      Change the rules and your mindset, fight your "tiredness", take the bike ride, go to the store, kick the ball outside, run to the corner, chase your kid, wash the car, clean the garage, run the dog, fix the gutter, play catch, get ice cream, whatever!!!! Damn it don't stop,  go balls to the wall because you cannot imagine what its like to spend your day in bed and then go to bed again, where you already have been all day, when everyone "normal"hits the sack.  It's no picnic believe me it plainly sucks watching the leaves blow in the wind, hearing the cars fly by, the kids laughing, all the while practicing your best Zen meditation battling your emotions, wanting nothing more than to be DOING, watching light turn to dark, repeatedly, getting out only when you have a Dr's appointment, your new "highlight.
    I was introduced to a really amazing family via a friend over the internet.  The Prudhommes have their own battle, as Ryan a 27 year old man, married to a wonderful supportive woman and father to a one year old son was out of the blue diagnosed with stage four cancer.  Ryan has exceeded his life expectancy since being diagnosed.  His secret, Living The High Life.  Take a lesson from the Greek and the Prudhommes; take that bike ride with your kid, kick the ball, live the high life, your bed will still be there when it's time.

Medtronics Intrathecal Baclofen Pump Tragic Saga Continues

     When I set out on this baclofen pump journey I never dreamt things could get so ugly, nor was I warned how invasive this surgery really is.  I wasn't aware a bone was removed from the spine to allow space for the catheter nor was I aware such a large incision was made through muscle and cartlidge in the back.  Worse off I was never warned about possible catheter migration, baclofen titration issues, withdrawal and the like.  Shame on me, shame on Henry Ford Hospital Neurosurgery, Shame on us both?  This process was presented to me like a walk in the park, and the Dr commented how his pump patients were among his happiest.  Naturally I was "pumped."  Either way I am worse off now than I was 9 weeks ago.
     So here I sit, no lay, while the pump beeps inside me reminding me of the four emergency room visits, fifteen visits for titration of the medicine, two catheter migrations, and three incisions including two in my back to get the catheter to stay in my spine, which it hasn't and currently is floating around my back like a buoy in a lake, non functioning.
     My several complaints as to this even more sedentary lifestyle seem to fall on deaf ears.  I have been basically bedridden since surgery one, and knowing how trauma to the body exacerbates the condition of a patient with MS never in my wildest dreams did I expect this incapacitated invalid state I would be in. "Write a book," "watch all the Marx Brothers Movies," was the solution from the articulate yet callous neurosurgeon, who by most likely accounts has never had to spend nine weeks and 90 percent of his day in bed while his four kids, his business, and the rest of the world continue to try to function and continue without him.
     Never in my wildest dreams did I see this kind of thunder and lightening on the horizon.  I was driving, working a half day, getting out in my scooter, and now I am doing nothing of the sort.  The pain and mental anguish I am experiencing is a test of only the highest magnitude imaginable.  Worse off, my only option is still another surgery.  Either I remove the components of this machine sewn inside of me, or I allow a third back slice and another shot at a hypothetical catheter anchoring, with no guarantee it will stay inside my spine.  So its either shit or shit basically, and very surreal at this point.  In fact it's a nightmare.
     The stitches in my back were to come out today, and as they stretch and yank and burn and pull, the spasm and spasticity go from worse to torture.  Naturally the Dr called in sick, par for the course, so it looks like I get to keep these bitches in another day and the black cloud hails overhead.  How can this be happening?
     Naturally I researched another Dr to get another opinion, and as luck would have it she was fantastic, knew every angle of the pump, has experienced fantastic results, and out of 200 patients has had zero catheter migration.  ZERO!!! What happened to me?  Surgeon ineptitude? Technical anchoring catheter problems? Greek spinal rejection?  What the hell is happening here?  Nobody has the answer.  Either way I am stuck here in bed, in pain, mentally, physically, with spasticity beyond belief, and no matter how much oral baclofen I take I am not experiencing relief.  I cannot sit in a chair due to weakness and spasm, can't work, drive or do any of those things I discussed earlier, and beep beep beep goes my dis-activated pump. WTF?
     There are many more details to this saga, and this is merely a synopsis.  One time in the ER they were so confused and had no idea how to program the pump that I had to call the rep on my cell, who traveled 160 miles to my hospital bedside to shut it down at 2:30 in the morning after wincing in pain for 6 hours prior!  Should I be responsible for my own care in an Emergency Room of Henry Ford West Bloomfield, a major Hospital?
    Moral of the story thus far: Do not take Medtronics Intrathecal Baclofen surgery lightly.  Do your homework,  Don't panic because your symptoms are so bad.  Don't rush.  Find competent and informed and familiar care. Find a surgeon that has done a ton of them and a Dr who has titrated the pump for many many patients.  When the new Dr saw what was in my pump she had never seen a concentration like that.  What the heck she commented?  Meanwhile I have made around 14 trips to the Dr who was titrating and as much as I really liked him, it was as if I was merely spinning my wheels and had no idea what was in my pump was not the proper concentration.  How would I?  I was relying on his expertise.
      Do these things and hopefully with a little luck you wont end up like me.  Nine weeks lost, worse symptoms, traumatized, incapacitated, pissed, frustrated, remorseful, dissapointed, anxious, and at times very hopeless just lying in bed, clear minded yet trapped in a body that is frozen like the Tin Man.  This is Bullshit my friends.  It's wrong, unfair, has stressed my family, my finances, and confused me more as to my purpose in this life.  The guy in this video is a putz but its the second alarm I get to hear every half hour, a reminder of this hell and the longer road ahead:(