An Instruction Manual for MSA Patients and Caregivers: Learning to Navigate Life Changes

Do you remember the moment your life changed; the moment when the doctor sat you down and gently and honestly said, " I'm very sorry to tell you that you have Multiple System Atrophy, which is a rare and progressive neurological condition." Were you sitting with a loved one, were you in disbelief, angry, sad, or relieved to finally know what was going on with your body? Your doctor probably answered many questions and explained your condition in stages so you could absorb time sensitive and life altering information.

Perhaps the message was not delivered with the compassion and support you deserved. This page is designed to answer your questions, provide support and resources to help you and your loved ones navigate through emotional and physical changes as you try to manage symptoms. The goal is to offer you comfort with the fact that you are not alone in the battle against MSA. This is a candid page that is designed to prepare you for symptoms and changes that may appear frightening when first experienced. Preparing in advance will help provide peace and rest when subtle or drastic changes occur. 

While prognosis is poor, there is much joy to be found in the time you have left and hope in the potential for improved quality of life through symptom management and emotional support.

                                                                           

Diagnosis and Treatment

Multiple System Atrophy (MSA) is a progressive neurodegenerative movement disorder that affects the body's involuntary functions such as blood pressure, balance, bowel, bladder, and motor control. MSA has no cure, and the cause is unknown. The disease progresses over time and eventually will lead to death. Survival rate varies. On average, MSA life expectancy is about 7-10 years from the onset of first symptoms. Diagnosis occurs in adults between the age of 40-70 years of age. While there are no current treatments to stop or slow down progression of MSA, other treatment options include medications to manage symptoms and improve quality of life, the use of medical equipment, physical, occupational, and or speech therapy to help maintain, improve, or adjust to declining speech and muscle coordination. Psychological counseling is also a benefit as you adapt to lifestyle changes. Medications and therapies will also vary with individuals so it is important to work with a care team of specialists to find the most suitable treatment that will benefit you the most.

Your journey to diagnosis may have been a long and rocky path. There is no definitive test to confirm the diagnosis of MSA except upon autopsy. However, some testing involved includes physical exam, brain imaging such as MRI to assess irregularities, shrinkage in parts of the brain, or dopamine deficiency, the tilt table test is used to assess blood pressure changes with position, and blood work. If you are having symptoms involving your autonomic nervous system such as blood pressure, bowel, bladder, or digestive concerns, other tests may be performed. Each individual is different, and symptoms will vary as disease progresses.                                        

There are three degrees of certainty for diagnosis. Your neurologist may have given you a possible, probable, or definite diagnosis of MSA depending on your symptoms. There are two types of MSA, parkinsonian type (MSA-P) and cerebellar type (MSA-C). Depending on how you initially present with symptoms is how you are diagnosed with a type. However, there may come a time when you experience symptoms of both types. Some symptoms that may be experienced with MSA-P are slow, stiff movements, changes in handwriting, and difficulty starting a movement or turning in bed. Some symptoms experienced with MSA-C are difficulty with fine motor coordination such as buttoning the buttons on a shirt, feeling unsteady or unsafe with stairs, poor balance, and slurred speech. Other symptoms associated with both types may include, restless sleep, weakness in arms and legs, weak voice, difficulty swallowing, blurred vision, cold hands and feet, sexual dysfunction, feeling dizzy upon standing, pain around neck and shoulders, urinary retention, frequency, or incontinence, inability to sweat, constipation, emotional disturbances, and loud breathing. In either case, day to day life presents unpredictable challenges so it is important to surround yourself with the support of family and loved ones, have good communication and trust with your neurologist and care team, and plan for future changes while taking one day at a time.

Disruptive Brain Pathway

MSA is given its name because Multiple systems are involved in the progression of the disease, Systems in the brain that control different functions are affected, and Atrophy or shrinkage occurs in brain cells. Areas of the brain that are affected by MSA are the cerebellum, basal ganglia, and brain stem. These areas are responsible for different functions. The cerebellum involves balance and movement coordination. The brain stem has many key functions including breathing, swallowing, digestion, sleep, pain processing, and  reflexes. The basal ganglia is an area deep within the brain and has other structures called the striatum and substantia nigra. These structures also involve movement and are responsible for muscle tone, thought and emotional processes, and the release of dopamine. 

Damage to these brain tissues show a buildup of a certain amino acid protein called alpha-synuclein in  brain cells called oligodendrocytes. Oligodendrocytes are special cells in the brain that support neurons. Neurons are the basic functions of the brain that communicate with the nervous system. The accumulations of these proteins disrupt normal nerve function and causes neurons in the brain to die. It is not understood why this occurs, but research still continues to understand the cause and find effective treatment. The brains of people with MSA have worsening damage and shrinkage to these portions of the brain causing adverse functioning. Remember there are ways to manage and reduce some symptoms through medications and lifestyle adaptations. Seek the advice of doctors that are involved in your care.

Living With MSA              

As MSA progresses, daily activities become more difficult. The rate of progression and type of symptoms are different with everyone. If you have received a diagnosis early on or late in the disease process, take the time each day to find a moment of peace with your loved ones, continue to adjust to updated living situations and if feasible, plan ahead for the time when mobility presents greater challenges. Take steps now to improve your health and fitness, avoid extreme heat, elevate the head of your bed for better breathing and blood pressure control during sleep, eat a healthy diet, keep track of your symptoms and questions for your doctor. Use services that are available as disability progresses. When the time comes, understand that palliative care is about maintaining and maximizing your quality of life. Whether you are the patient or the caregiver, learn to ask for help. There is no shame in that. There will be good days along with bad days. Try to remember there is more happiness in giving than there is in receiving. By not asking for help you could be robbing someone of their happiness by helping you in your time of need. Above all, appreciate the little moments of today and stay in the present for that is all that is promised to anyone.                                                                      

Listed below are some support groups and patient advocacy organizations to help you and your loved one's cope with the challenges of living with MSA.

https://defeatmsa.org/

https://multiplesystematrophy.org

https://podcasters.spotify.com/pod/show/msa-crusaders

https://podcasts.apple.com/au/podcast/multiple-systems-atrophy-the-nature-of-the-beast-revisited/id426391174?i=1000465490557

Facebook support group- Multiple System Atrophy (MSA)

Facebook support group- MSA Widows and Widowers

Grace

11/17/21

Shaken in the valley of the shadows, Grace reminded me that I am not alone. 

I have been there before, and the hands of God have carried me when I could not walk on my own

When the stormy waters kept rising with a vengeance, I heard the words of a dear friend tell me, 'to keep swimming and don't give up'

There is power in those words, because without them I was about to sink in the raging storm; but with all my might I kept swimming

I have seen the face of death and in that moment, I feared my final thoughts

The sound of silence was crippling, I had wishes I could not speak, my eyes could not see the faces I loved, the only sensation I had was a warmth trickling down my cheek; I was trapped in sorrow and my body longed for relief

Prayers of faithful ones were heard, and I was given breath, my eyes were opened, and I was reminded I was never alone; yet cradled in the arms of God

Human Dignity

Disputes of Human Dignity

Natural law and human dignity go hand in hand. The first principle of natural law is a universal concept that everyone can understand. It is to pursue good and avoid evil (May, 2013). Defining what is good and what is evil is objectionable in the diverse world in which we live. Human beings assign themselves virtue according to their beliefs, culture, morality, and ethics surrounding their society. However, the fact remains that there are multiple meanings behind dignity and therefore, disputes among societies. Theological, cultural, constitutional elements all contribute to how one treats themselves and others with decency. To have human dignity means to have self-respect, integrity, and a sense of value. In accordance with natural law, it is entitled to every human being. Human dignity is an inherent intrinsic value that is in jeopardy of losing its fundamental meaning because it is dependent on how we treat each other and can be so easily denied to others.

The central theme of Catholic health care ministry and Catholic social thought is the protection and promotion of human dignity (ERD’s, 2018). The principles of natural law have an impact on contributing to a humane society when they are understood and applied appropriately. The extrinsic effects of ones’ dignity depend on the circumstances that guide a persons’ morality.

For instance, the ancient Greek story of Antigone defined her as a person of virtuous integrity. Antigone returned to Thebes to prevent the fulfillment of the prophecy that her brothers would kill each other in a battle for the throne. When she arrived, she was too late. One of her brothers was declared a traitor and was not permitted to be buried with honor. After battling with her conscience, Antigone proceeded to bury her brother and was caught. The ruler Creon punished her with imprisonment. Antigone claimed that the law of Zeus was higher than the law of man. She buried her brother with dignity because Divine law had a greater influence on her decision than the moral law of man although officials saw it as defiance and dishonorable according to the law.

The Nuremberg trials that took place after the holocaust are another controversial dispute. Legally the Nazi’s did nothing wrong, however, their crimes are claimed to be against humanity. They violated the most important human right by disregarding the dignity of their prisoners by treating them as mere objects rather than human beings.

In Japan, when the elderly require care, it is custom for children to bring them into their homes and care for them, but in the States, it is a common practice to put the elderly into nursing homes and cared for in understaffed facilities that compromise quality care.

            When farm animals and household pets fall ill of disease and nearing death, it is an acceptable norm to euthanize. Yet, human beings who are sick and suffering with an inevitable death are denied wishes to end their suffering with euthanasia, especially when palliative measures are no longer effective. Some argue that animals receive more compassion than human beings.

Prostitution is one of the oldest occupations known to man and still quite common today. Yet, moral norms are questioned and deemed not only illegal in certain societies but absolutely forbidden in the eyes of the Catholic church (2018). Depending on the prostitute or perhaps the pole dancer in question, some may claim that it is a noble way or earning a living. Whereas, onlookers, even most participators, view it as immoral and undignified to its core but accept it as reality. Does Maslow’s hierarchy of basic human needs outweigh or replace dignified actions or occupations?

Human dignity is a value that has practically become absent in today’s society. The lack of its presence appears to be threatening moral norms. Human dignity is complimentary to natural law and ultimately defines us as human beings. It is our dignity that promotes us to do good. John Paul II reminds us that goodness of a “moral action” even when the “intention is good” is simply not enough (Newton, 2014). Not only do our actions have motives, they also have consequences. The question is, are the moral choices we make guided by moral judgements that align with our God-given freedom of choice; resulting in truth and justice. A man’s dignity lies in obeying the laws deep within his conscience, the voice of reason that tells him to do good and avoid evil (2013). The language of St. Thomas Aquinas speaks loudly to the effect of human dignity and its role with morality and ethical thinking. He distinguishes the difference between the moral and practical principles of natural law; to pursue good and what that good entails. Aquinas takes it a step farther by implying that it is a Divine love that fulfills our dignity and by that grace we become virtuous, flourish and help others find that inherent quality that may have gotten lost along the way (2013).

Ethical and Religious Directives for Catholic Healthcare (2018). United States Conference

            Of Catholic Bishops.

May, W.E., (2013). Catholic bioethics and the gift of human life. Our Sunday Visitor. (3) 60-76.

Newton, W., (2014). John Paul II’s Veritatis splendor: “Teacher, what good must I do to enter     the kingdom of heaven (Mt 19:16)”. Franciscan University of Steubenville.

I AM

                                                                                   

I am five years old and my life changed today.  I love my school and its name, Tawanka.  It reminds me of stories my mother would tell me about her love for Native American heritage. My mother once told me,  before I  was born she decided she was going to name me, Konoko. She told me the name meant, “This child”.  I’m glad she choose a more suitable name for me, Jennifer, meaning “fair one”.  Tawanka is an Indian expression that actually means, “Willingness to achieve”. 

I am in kindergarten and I think I am definitely willing to achieve anything, especially climbing to the top of the monkey bars.  My favorite place is the coolest spot in the entire school, the recess yard.  There are animals strategically painted on the outside walls of the playground.  It gives me the feeling that I am in the jungle.  The first thing I do during recess is run across the blacktop to the dome-shaped monkey bars located in the center of the yard.  Today, I was halfway up to the top of the hollow steel circle when a bee landed on my head.  I didn’t know it was a bee when I touched it.  That angry bee pressed it’s stinger into my hand and left me with tears in my eyes and a very strange feeling in my body.  It was my first bee-sting and a traumatic one at best.  Today, my family and I learned I have an allergy to bee-stings.

I am eight years old and I lost something today.  This morning was just like every other day of the school year.  My brother and I woke up and got ready for school.  We ate a bowl of cheerios for breakfast before leaving our three bedroom home located in a small residential community.  School was no different than the day before except for the quiz I had in religion class.  At the end of the school day, our bus dropped us off at the end of our street just where it had picked us up almost seven hours earlier.  We live halfway up the street.  As my brother and I walked toward our home, adorned in our tacky green private school uniforms, I noticed something out of the ordinary.  I squinted my eyes and saw red and blue flashing lights in front of our home.  There were cars surrounding my house.  I held my brothers hand and stopped walking.  I saw my father in handcuffs.  His hair was messy and there was blood dripping from his nose.  A police officer had him by the arm and pushed his head down to assist him into the backseat of a police car.  I don’t know how this makes me feel because my father is an abusive and unpredictable man.  What I do know, is word will travel fast so I will have to put on the tough girl act so no one picks on me.  I don’t know when I will see my father again, nor do I care.

I am twelve years old and I just experienced my first spiritual awakening.  Two of my girlfriends and I steal some Canadian Whisky from my parents’ bar and we head down to the baseball-fields.  I believe I fell in love from the very first sip.  My jaw tenses as I take my first swig, I feel the burn as it goes down my throat and the warm explosion when it lands in my belly.  I want more and more.  I don’t want to stop.  This stuff is making me feel good and quieting my mind.  Nothing else matters but me, in this moment, at last I have arrived.  

I am fifteen years old and I am seeing the world differently.  I hop on a train and run away from the only home I ever knew.  I want to run away from my life and the addiction that is taking my choices away.  It’s cold and rainy and I am alone on city streets.  I meet a bum sleeping on the street vents to keep warm.  I give him money to buy himself some liquor and pick up a bottle for me.  I say thank you and move on.  I am at peace until my drink is gone.

I am thirty eight years old and I have a gun to my head.  I owe bad people money and bad people owe me money.  I have emotionally abandoned my only child and deceived the only man who truly loves me.  I am home alone sitting on my bed.  Tears are streaming down my face.  My hands are beginning to tremble.  I place the gun back where it belongs and grab a bottle of vodka.  My shaking begins to subside but the pain of living this life is still present.  I drop to my knees and pray to die.  Little do I know that my prayers will be answered.

I am forty two years old and I am about to graduate from college.  Through a miraculous series of events, Grace appeared and saved me from myself.  I feel like I am five years old again climbing the monkey bars of life; overcoming obstacles and achieving potentials that were lost along the way.  I daily reflect upon my life; where I came from and where I am now.  The biggest lesson I have learned along this amazing journey is that once you show a little willingness coupled with surrender, anything is achievable.

Today I am a wife, mother, student, and a productive member of society.  I am no longer defined by the wreckage of my past but for the person I have discovered inside of me.  It has been almost four years since I left my past behind and I am grateful for the day it broke me.  There are no regrets but a lesson I have learned and a lesson I can teach.  Today, I am happy and free to be me……

Battle of the Terriers

                                                             

There was nothing different on this Friday evening except the fact I had spilled lobster bisque down the side of my chef pants 15 minutes before my shift ended. I would be alarmed if I did not hear two very distinctive barks echoing from my home as I strolled up the walkway. One bark is very deep and threatening and the other is high in pitch and piercing to the ears.

            This particular evening was quite the homecoming. When I opened the door I saw a bluish-gray blur of a pit bull clumsily trot like a playful horse across the kitchen floor. His razor sharp teeth were smiling at me and his tongue was flopping out the side of his massive jaw line. Trailing behind him was the ‘Prima Dona’ of all Yorkshire terriers. Her ears were perched high, her brown eyes were wide, and her little tail was erect.

  The Staffordshire Pit Bull Terrier, who rightly adorns the name Ruger, had pinned me against the kitchen door with his 92 pound body of solid muscle. His tail wagged profusely acting like a whip; his hips drastically wiggled side by side like a model in a bikini contest, but with far less grace. Ruger greeted me with the wettest of dog kisses and then noticed the scent of lobster bisque on my checkered chef pants. As his big box-shaped head began to move toward my leg his droopy lips left a white trail of drool down my pink chef coat before he started to feast on the remnants of food left on my clothing.

            In the meantime, Miss Mia, the Yorkshire Princess, cleverly dodged the powerful strikes of Ruger’s whipping tail that could send her shaggy five-pound body soaring across the room. With perfect precision she leapt onto the back of her brother breed, ran up to my chest where she always finds comfort, and proceeded to greet me with numerous dog kisses that quickly became annoying. Unlike the pit bull who slobbered up my cheek, little Miss Mia meticulously found the need to groom my face in detail. Quite opposite of the pit bull, the yorkie’s tongue is unusually long and exceptionally dry. I entertained the little dog’s affection until her long lanky tongue started to curl up into my nose then that was my cue to begin the calming-down process of these furry beasts who battled for my attention.

         Although there is a significant difference in size, both these canines have a similar body structure. They are both very broad and muscular. The most obvious difference other than their height is the width of their head. Despite the Yorkshire having a petite head and thus a much smaller brain size she can out-wit a pit bull with her clever and sometimes devious intuitiveness.  They are both extremely loyal and protective. Mia is the guard and the master manipulator. Ruger is the power and the threat. Mia is the type of dog that rarely sits still. She is constantly on guard and when something isn’t right she makes a fuss and Ruger joins her in the action. When we go on dog walks, if a stranger comes close, the pit bull will put himself between me and the other person. One time Mia ran out the back door and toward the road and Ruger chased after her and stopped her before she reached the street and oncoming traffic. These terriers are truly the definition of a man’s best friend.

 With all families, there are times when a difference of opinion may arise especially among siblings. The terriers who live in my home are not exempt from this rule. For instance, they constantly battle over the ratty skunk toy that no longer has any stuffing left in it.

And like most nights, a little doggy spat occurred. Ruger chose the large ratty skunk toy. Mia decided she didn’t want the small skunk toy that was still fluffy and squeaked. She wanted the large ratty skunk that was between the pit bulls paws. Mia, like most females, showed no mercy until she got her way. She is notorious for acting as if she is as big as a pit bull. She jumped onto the couch for higher ground, instigated, and when Ruger got up she latched on to his droopy lips and dangled until he shook her off. By then he had forgotten about the toy and she ran off with the prize. Although Ruger has the powerful ability to inflict much damage, he seems to respect her size and has always protected her from harm.

            Now that my animals have calmed down and I no longer smell like lobster bisque it was time to cuddle with my pets. Although Mia is a tiny dog and loves attention she generally does not show the submissive temperament of a lap dog. However, the beast with coarse prickly hair is a living, breathing, teddy bear. I heard Ruger whimper from the floor. He wanted to come up on the couch but Mia was in the way. I couldn’t refuse those big brown lazy eyes. I picked up my five pound munckin’ and petted her little mustache until she went on to the cushion behind my head. When the seat was clear, Ruger jumped onto the couch, made two circles, and then practically sat on my leg. Within minutes the three of us were snuggled up comfortably close with each other on the living room couch.

 Eventually, Ruger was drooling on my leg and snoring. Mia was curled in a tiny brown ball, peaceful and still. Feeling content petting my loyal, fury friends, I looked down at them and thought how different the three of us are; but yet how we yearn for the same basic need of love, friendship, and security.
                        

Room of Secrets

                                         

A world within a world

  I pushed the door open not knowing what scene would be taking place on the other side.  The heat of the air smacked me in the face, sucking the air from my lungs.  The room was an overwhelming yellow and the floor spoke to me through the checkered white and yellow squares that were barely the size of my thumb.

Secrets

            The wall on the opposite side of the entrance held two touchless sinks shaped like a woman’s breast.  In the center was a black censor that knew when someone was in need of a soothing fluid and would do the motherly honors of cleansing impurities, refreshing the skin, and preparing oneself to leave this room of secrets.

Ladies

I’ve seen females hog up the wash counter as they spread their make-up across the entire area, and finish with such precision, what they could not do at home.  The room hosts women of all kinds for whatever reasons.  The gossip room, the hair room, the toilet room, the obvious place for junkie’s to get their fix, or just simply a haven to address insecurities.

Noise

            The light that buzzes above one of the three stalls serves as a reminder that this room is never quite.  Whispering, laughing, crying, water flushing.  Even the quite gestures in front of the mirror speak loudly to the atmosphere of this environment.  It may offer a small token of privacy or serve as a sanctuary from the outside world but it is, and will always be a room that holds the secrets of the most prestigious women of the world.

Who is the Legendary Drummer Behind the Blue Beard that Tool Prog Out to Sea?

Who is the Legendary Drummer behind the Blue Beard that took Prog Out to Sea?

                           
I never thought that I would be swinging from a rope during an album release party in NYC, after Adrenaline Mob had an amazing performance celebrating the release of their first album on March 13, 2012.  The new band took over the Hiro Ballroom that evening, no one left disappointed. At the time, Mike Portnoy, was the drummer of the metal supergroup and since then has left the band but continues to be involved in many different projects.
                                                     
 I met Mike Portnoy 12 years ago and only knew him as the family man that he is.  I had very little knowledge of progressive rock at the time but have grown to appreciate the talent such musicians’ master. Progressive rock is a broad subgenre of rock music that originated in the United Kingdom and the United States in the early 1970’s with bands such as Genesis, Yes, King Crimson, and ELP.  It was the type of music that was all about excess, long songs and instrumentals.  Imagine the combination of Jazz and Classical music meeting Rock and Roll.  Progressive metal is the fusion of heavy metal and progressive rock which combines aggression and amplified instrumentals that last longer than an average song.  In the late 1970’s, progressive rock began to fizzle as Disco and Punk rock began to make their debut.                

      

In 1985, Mike formed the band, Dream Theater.  The members of  Dream Theater took the blueprint of progressive rock and combined it with the hardness of bands such as Black Sabbath, Iron Maiden, Metallica, and Judas Priest and shared the sound of progressive metal with those who would listen.  Dream Theater is a progressive and technical band with very long songs and instrumental breaks.  The technical style and sound of Dream Theater broke through in the early 1990’s leading to Portnoy’s first award in 1994 as Best Up and Coming Talent.  Since then, MP has won 30 musical awards and was the second youngest to be inducted into Modern Drummer’s Hall of Fame at the age of thirty-seven.  One of Portnoy’s all time heroes and great influences, Neil Peart; drummer of Rush, holds the title of the youngest to be inducted in 1983.  It seems as though Dream Theater carried the torch of progressive metal and brought its sound into a new generation.  Although this progressive and technical instrumental sound of music is still more underground, it definitely has a place of its own in the world of music.     

                                                         
The influence Portnoy has on his children and the fans he has touched worldwide beats louder than the drums he performs on.  The methodical rhythm of his musical career runs deep in the hearts of those who love him throughout the world.  Despite the fact that Portnoy has spent a majority of his time in studios and on tour, his influence still has seeped into the lives of his children.  Mike says that some of his, “proudest moments in the last few years weren’t even things I were doing or that were part of my career.  It was watching Max do what he does and his dreams coming true.  Now he is getting to make records and go on tour.  I couldn’t be any prouder.”  Mike’s son Max is following in his father’s footsteps.  He has watched his father all his life and wanted to pursue the same career.  Mike had a share in producing his son’s band, Next To None’s first album two years ago and states that “I got to share in that experience which made it very special.”  Mike looked to the sky and said, “I have won every award a drummer can win but nothing compares to the moment in 2015 when Rhythm magazine awarded Max Best New Drummer.  Winning that award blew away anything I ever won.”

    
 Musicians are artists who speak a message in many ways.  Their tune, their beat, their lyrics, even the messages that ink their body share with the world who they are.  I asked Mike about the inspirations of the beautiful artwork displayed all over his body.  Each piece had a story.  Each piece was his song.   
“My body is a map of not only my musical career but my life.”  Portnoy started inking his body when he was twenty-one years old.  His first dozen tattoos were all music related from his very first album cover on his left shoulder to his favorite bands which include the Beatles, The Who, and Led Zeplin on his right leg as well as those he worked with throughout his career.  Music is not the only thing Mike has painted on his body.  He is a lover of animals and everyone of his pets have been welcomed into his family.  Each one of the drummer's dogs are placed in close proximity of each other on his left calf.  Of his three dogs, one still remains.  While Portnoy was celebrating his 50^th birthday bash and performing on Yes’s Cruise to the Edge, his beloved Maggie passed away.  On his back he has the baby footprints of both his children from the day they were born, who are now 18 and 20, a ball and chain tattoo with his wedding date representing his connection with his wife, Marlene of 27 years.  In the center of his back he has a commemoration of his late parents.  He claims he is never alone, “I have them with me while I am on tour.” 

Portnoy not only had his share of grief and tragedy, especially with the loss of his mother in a plane crash as a young man but experienced demons of his own.  After a battle with alcoholism, the iconic drummer put down his last drink in April of 2000 and on his 5 year sobriety date he had the recovery triangle tattooed on his right hand.  While in the midst of his addiction, two doctors told him on the same day that he would not make 40 unless he changed his ways.  It has been over 17 years since Mike picked up a drink and he says, “There is so much I am grateful for.  I have this amazing career and life.  What more could I ask for."

                                                    

During his early sobriety, in 2001, MP wrote a series of twelve step songs and music than spanned over 5 albums and 8 years to complete.  He candidly speaks about how this was a healing process for him yet he never got to perform them live until 2017 on a cruise ship out to sea. While on a Cruise with Yes and Kansas, Portnoy performed two concerts that spanned his whole career which he said was "amazing on two levels,"  to finally perform the Twelve Step Suite in its entirety and how it was an “emotional experience revisiting Dream Theater material for the first time in six years.”  Since the recording of his twelve step albums, hundreds of fans have told him how his songs have helped point them in their journey to recovery.  In 2013, Mike wrote a song entitled, “You Saved Me” with the Winery Dogs, dedicated to his wife for her unconditional love and support. https://www.youtube.com/watch?v=7nk5EQ2KEWo He is grateful for Marlene’s support and says his “family is above all, the most important priority.  People come and go but family is forever.”

When I asked Mike if he could do it all over again, what would he change, the musician smiled at me, lifted his arm and bent his elbow, showing me the words inked on the underside of his forearm, No Regrets.  “ I don’t regret a single thing even the decisions that were difficult… It hasn’t been perfect, it hasn’t been easy but it’s all part of my story.”  While facing issues with addiction, balancing family life, and pursing a career of his dreams, the energetic drummer claims without shame, the things in his life have led him to where he is today despite the challenges he faced to get there.    

                                                                           

 “Drums are my tool.  I made a career with the drums.  But in all my bands, my role goes beyond the drums.  I am a writer, producer, video director, oversee websites, fan clubs, and merchandise.  In the 40 years of playing drums, I have made a name for myself but there is more to being in a band than playing your instrument."

MP’s musical taste goes beyond the huge drum kit he sits behind, “The key to a musician is an open mind to explore new styles.”  After 25 years with Dream Theater, Portnoy left the band in 2010. “It was a very difficult decision”, but in the last 6 years, the drummer has proven his musical diversity and talent.  

                                                                                                      

No matter who you are, where you come from, what you look like, Mike Portnoy has shown the world that anyone can overcome grief, tragedy, hopelessness, pain, and live a life in the midst of their dreams. “Anyone who knows me, knows I am a normal guy, with a blue beard.”

 Whether letting it all out in performing on stage or spending time with his family and friends, MP has shared his life and musical talent while remaining true to himself and has cleared a path for the next generation of music, his family, and humanity.  “The part of writing lyrics that I love is the part of sharing a piece of your life.”  The artist then voices, “If it all ended today, I would be happy and satisfied that I left my mark and created a great path for my children to follow.”

Portnoy just returned from touring in Europe, however, keep your ears and eyes open for the beat of the drumming legend and the talented musicians he will be touring alongside with, such as Neal Morse Band.  Next month, Portnoy will be touring in South America and then returning for an American tour in the summer. For the remainder of the year MP will be performing his Twelve Step Suite during Shattered Fortress events that has rocked the lives of many and set the foundation of his sobriety.   Dream Theater - This Dying Soul (with lyrics) - YouTube https://www.youtube.com/watch?v=WK2R6RNwHDY

                       Allow your soul to be touched.  Feel the beat and dance to the music.