What I Want Anyone Else Living With Dystonia to Remember

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Living with dystonia is sometimes reminiscent of the plight of Sisyphus, a king from Greek mythology. Sisyphus was condemned to an eternity at hard labor. His punishment was to roll a massive boulder up a hill until he reached the top. However, right before he reached the top the boulder rolled all the way down and he had to repeat the task over and over.

If you have dystonia, this might sound like what you experience on a daily basis. It can be utterly frustrating and exhausting living with chronic pain, shopping for a good doctor, people not understanding, continually fighting to get better and not getting over the hump, trying to find new ways to relieve symptoms or just getting through the day with as little discomfort as possible.

Although it may often feel like we are rolling a boulder up a hill only to have it roll back down and crush all our efforts, in the face of all your challenges, is it not an accomplishment to even get the ball rolling up the hill? I think so. Dystonia challenges us in ways that we probably never imagined possible. These challenges make each accomplishment more rewarding. With this perspective we realize that dystonia does not diminish our value as a person. In many ways it enhances our value.

Unlike Sisyphus, there is hope for us. We are not alone in our battle, and while we have no cure at this point, we do have treatments that can help us manage our symptoms so we can live a productive life. Researchers are working every day to improve on them, as well as find new treatments. Granted, for many of us life is different than we once knew, but that does not mean it has to be any less enjoyable and fulfilling.

If you have ever seen the movie, “The Shawshank Redemption,” picture the moment when Andy Dufresne (played by Tim Robbins) escaped from prison after crawling through a 500-yard sewage pipe. He came out clean on the other end when he fell into the stream with the rain pouring down on him. He tore off his shirt and raised his arms to the sky as a sign of freedom and triumph after being wrongfully incarcerated for nearly 20 years.

Just like Andy Dufresne, we all have days where we feel like we are trapped in a prison cell and sewer pipe. There are also days when we feel as he did when he reached the other side and was free. Savor these moments. Remember these feelings. Write about them in your journal. Talk about them. Celebrate them. Figure out what you did or did not do that made you feel better. Do whatever you can to leave an imprint on your mind about how you felt so you never forget. We can then have the ability to go back to that place in our minds anytime we choose to get relief and peace of mind.

When you find yourself in the “sewer,” I suggest remembering that hope never dies. I believe you can always get out. You do not have to live in the mental and emotional world of fear and loneliness that is like the prison cell and sewage pipe. When you get knocked down, you can get back up. If you have done it before, you can do it again. It does not matter how many times you get knocked down as long as you keep getting up and keep going. I define strength not by how powerful we are but how persistent we are.

Just like Andy Dufresne said in the movie, “There are places in this world that aren’t made out of stone. There’s something inside that they can’t get to, that they can’t touch; that’s yours… hope… Hope is a good thing, maybe the best of things, and no good thing ever dies.” Remember this as you live your life. Just because today may be a challenging day, there is always tomorrow to begin anew.

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

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A Letter to My Daughter, the Little Girl Doctors Said Shouldn’t Be Here

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Dear Piper,

My biggest wish is that one day, you will know in your heart of hearts how truly fierce, capable and resilient you are. If you understand and believe in what’s inside of you, you will be able to accomplish anything you set your mind to.

When you were just 6 weeks old in my tummy, that was the first time we thought we’d lose you. I started having horrible bleeding, and in my mind, there was no way you could’ve survived it. We had to wait weeks before we were able to go in and see that amazing, strong little heartbeat fluttering on the screen. Your dad and I breathed a sigh of relief, if only momentarily. We repeated this process several times throughout those early months. Episodes of bleeding in which we were told we would most likely lose you, that you had a 50 percent chance of making it, that you were hanging in “for now.” 

At 20 weeks I was sitting on the couch and felt a gush of fluid. After nervous laughter (“Did I just have an accident?”) and frantic calls to the doctor, we found ourselves driving 90 miles to the hospital in the middle of the night. The results? My water broke, and there was no measurable fluid and next to no chance you would survive. We were told most women would go into labor within the next 48 to 72 hours. If this happened, I would have to deliver; they would not stop the labor. If I did not go into labor, I would be sent home until 24 weeks. At that time we would be admitted into the hospital until you decided to make your appearance. 72 hours came and went and nothing happened, so we went home. Every week we would again drive the 90 miles to the doctor’s office and have blood work and an ultrasound done. Every week there was still no fluid, but we were a little more hopeful. However, we were reminded that with little to no fluid for your lungs to grown and learn to breathe with, you may not survive after birth, no matter how long I was able to stay pregnant. 

When we neared 24 weeks, we were told that if we wished to end the pregnancy, we only had a short period of time in which to do so. We declined, having said from the start that this experience was yours only, and that we would support you for every second of it. I believed how long that would be was up to you. 

Around 25 weeks we traveled to the next state over so that we could be in the best hospital to save your life. Before you were even born, we knew your life would require saving. To our heartbreak and surprise, they told us you were too small, had major heart conditions and most likely a genetic disorder. Any one of those alone would have been a battle. However, all three of them, along with the fact that you had spent the last four weeks with no fluid and would definitely be born premature — it was too much, they said. You most likely wouldn’t survive. We were asked what we wanted to do. Again, we stated that this is your life, and we wanted everything done for you.

During the stay in the hospital, we were told things like your chest to abdomen ratio was at a “lethal level,” and that they gave you a “1 percent” chance you would live. We had one doctor tell us she had so much more hope for your survival last week. 

Guess what? You were born, all one pound, 10 ounces and 11.5 inches of you at 28 weeks. You made it through the first week, then the first month and now two years. You fought through 128 days in the NICU to come home with a resolved brain bleed, feeding tube and oxygen. You have had countless doctor appointments, therapies and hospital stays. Just when we thought we had one thing taken care of, it came back and you are fighting that with the grace and fierceness you have from day one. There are hard days, but there are days full of smiles, laughs and lots of hugs and kisses. You are a survivor. The world may know statistics and possibilities, but it didn’t know the heart and soul in one pint-sized little girl.

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When Delta Air Lines Went the Extra Mile for a Boy With Autism

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I have a friend with a son named Jonah. Jonah is on the autism spectrum, is mostly nonverbal, attends occupational therapy with my son, G-Prime, and he likes Delta Air Lines. I mean reeeeeally likes them. He draws their logo and makes Delta costumes and gets massively excited when he sees their name. He’s their superfan! When his mother heard I would be flying Delta, she asked if there was any way I could get a selfie with a plane in the background and maybe some of their cookies. Easy peasy!

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Before my flight, I ran around the windows at my gate, taking pictures of Delta carts, Delta planes and Delta baggage carts. When I explained what I was doing, the Delta employees working the gate let me take a selfie with them in the background.

Once I was on the plane, I spoke with the flight attendant in my section and asked if I could take pictures of him and get some packets of cookies for my buddy, Jonah. Not only did this gentleman oblige me, but several of the passengers behind me passed forward peanut and pretzel packets and wished me and Jonah the best. You fellow flyers are awesome!

After we landed, I snagged a picture with the flight attendants and pilots and was satisfied that I accomplished what his mom had asked. Plus, I had extra goodies for him. Yes!

On the return flight, I got to the airport early, checked in, found my seat and settled in for a three-hour flight. But it didn’t happen. There was a mechanical issue, and a part needed to be fixed. We had to de-board the plane and wait for six hours until the next flight would be leaving. People were stressed out, disappointed and upset. But to Delta’s credit, they handled things beautifully. Pizza, snacks, board games and activities were provided for those forced to wait, and they assisted the rest of the passengers on finding new flights and making necessary connections. I understand how hard this delay was for most of my fellow flyers, but for me it was the perfect opportunity to get a few last shots of Delta planes, baggers loading luggage and, best of all, the pilot of the plane agreed to record a special video message for Jonah!

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That four-second, five-word video meant the world to Jonah. His momma messaged me that he was jumping around, and we had made his day! Everything I sent had been downloaded onto his iPad, and he was gleefully going through the pictures and videos over and over. Mission accomplished?

I sure thought so, but Delta wasn’t done. A certain flight attendant named Nicole had been on both the flights that I had been on and had heard me talking about Jonah and his intense interest in her employer. During the flight, Nicole sat down next to me and asked me questions about Jonah and my son. She asked what Jonah would like best from them, and then this sweet woman brought me a Delta swag bag filled with goodies, a snack box, a lunch box, baggies, a coffee cup and extra packets of cookies.

Some people may not get why this was a big deal. It was just a few pictures. The video was only a few seconds long. The items donated aren’t that expensive. All those things are true, but for Jonah it meant so much more. This boy faces challenges in terms learning, growing and connecting with others on a daily basis. The world assaults his senses in a million ways, and he doesn’t have the words to communicate all of his needs. He works hard to overcome this. His mother works hard to help him. And those few pictures, videos and goodies told Jonah and his mother that they matter. They are important and people care! It communicates they are not alone in this journey of autism. And that makes every little effort given worth more than you may know.

Thank you, patient passengers. Thank you, kind captain. Thank you, Nicole. Thank you, Delta! Thank you!

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Follow this journey on The Musings of Mo.

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Why Living With My Disease Makes Me Want to Become a Doctor

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My odyssey with Parkinson’s disease began at only 14, when a form of Parkinsonism slowly started to affect my ability to move. My life would never be the same. The pains in my ankle signaled an awareness that my body had stopped working and that my health would slowly decline. Over time, that pain in my ankle spread throughout my entire body. Something was twisting all the skeletal muscles within me while my ankle pronated inwards at 80 degrees. Bradykinesia came and made my movements so slow, people much older than me would pass me in the aisles of the grocery store.

High school was marked by baffled doctors, endless medical tests and declining motor functions. That’s when I discovered a passion for chemistry and science, along with a growing desire to find my own diagnosis. Four years passed and I had gone to college under the assumption that I would graduate in a wheelchair, with a drive to do and achieve as much as possible, while able. In October of my freshman year I finally got my diagnosis – Parkinsonism and dystonia. Starting Parkinson’s drugs changed my life. It was like my body was free for the first time in years. My muscles remembered again how to engage properly. The instant I realized this was working became a moment that defined the course of my disease. The hope that something could help me live with my symptoms gave me the inspiration to fight this disease and others — to become a doctor.

Successful treatment lasted for two beautiful years. It wasn’t a cure, but I was living. The medicine and my passion for what I was learning was enough to get me through every day. Over the next two years, my medication had to be doubled, then supplemented with a second class of drugs to stop the fluctuations I had endured — even while taking pills every four hours. Junior year of college began with me feeling on top of the world. I was doing great, excelling academically with two very successful summer research internships behind me. October came, I turned 20 and we celebrated those two years since the diagnosis. All was well until one Sunday of that same month, when I started to feel my arm flailing uncontrollably.

Levodopa-induced dyskinesia. I knew what it meant: the end of my era of successful treatment. Dyskinesia was the symptom that changed my life forever. It began a rapid downward spiral. The next eight months were spent trying every medicine prescribed until there were no more options. Nothing worked. Some days I could not get out of bed, fainting upon standing because my blood pressure and heart rate were becoming erratic. I lost the ability to eat and feared starvation.

On top of the non-motor symptoms, the spasms became so severe that at times I could not move or talk. There was no doubt — things would keep declining unless something drastic happened.

I am one of the lucky ones. I am so fortunate that there exists a surgery that could save me: deep brain stimulation (DBS). On June 1, 2015, I had DBS. During the procedure, an electrode was implanted in my brain while I was awake. They turned on the electricity and knew they targeted the right area when my body began to work again. I felt that moment when the surgical team turned on my electrode and I was suddenly capable of coordinated movement and felt my shoulder’s rigidity relax. I could physically smile again like I had not in so long. I kept saying over and over again, “This is amazing.”

These are the moments that define my trials with Parkinsonism. These moments define who I am, not because I am my disease, but because I live and love life through this all. Every day the effects of this disease remind me of the fear of that first realization and how far I have come. The first time the Parkinson’s drugs started to work, just when all hope seemed to be lost, this medicine came and changed my life. That moment energizes me whenever I am feeling lost, remembering that there is constantly the potential for something wonderful to come and surprise me. When things are going well, I remind myself to be thankful — because I know what it’s like to have everything come crashing down. I don’t take life for granted because of that night when dyskinesia found me. Every day I wake up alive, no matter how bad of a day it is, and I hold dear to that moment when surgery changed my life forever. I smile, why? Because now I can. 

My desire to become a physician is intrinsically linked to my experiences with Parkinsonism and dystonia. Every day I am inspired by the people in our community who fight this disease, some of whom look up to me now as a fellow survivor. Throughout the process, they offered me words of encouragement, of hope. It has been such a joy and a blessing to be able to share my experiences, to encourage and support others with the disease and those who pursue DBS. My doctors have shown me the amazing difference good physicians can make in someone’s life.

I want to be that doctor for someone like me, for the scared little girl I once was. I know not everyone gets the kind of second chance that I got, but my second chance was only possible because of people who fought for me. It would be an honor to be that doctor for someone else.

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How Becoming a ‘Floating Head’ Breaks the Ice About My Disorder

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I go to my acupuncturist a couple times a month for a treatment, but I visit her office a few times a week to use her infrared sauna. It helps loosen and relax my muscles that are tight and sore from living with dystonia, a neurological disorder I have had for 15 years. I’m only there for about 20 minutes, and while I talk to pretty much everyone, I recently learned that there is a lot more conversation going on than I was aware.

You see, this sauna is unique in that it’s in the waiting room where I can interact with other patients. It is also a funny-looking contraption so it attracts attention. I sit on a chair inside of what looks like a tent. My body is fully covered to let the infrared heat penetrate my muscles, and my head sticks out of the top. It’s bizarre looking, especially to those who never saw it before.

It didn’t take long for me to be known as the “floating head.” Everyone who walks in the office — from patients to caretakers to kids and even the postal carrier — either says something, asks something or at the very least smiles and/or laughs. It always sparks some sort of personal exchange.

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People want to know what it is, how it works and how it helps me. This always leads to a conversation about dystonia and chronic pain, which I love to talk about because it increases awareness.

I recently learned that the conversation doesn’t end with me in the waiting room. My acupuncturist told me that when her patients go into the private treatment room, they ask her more about me, dystonia, chronic pain and why I use the sauna. This then gives her an opportunity to educate her patients even more about dystonia and chronic pain and how the infrared sauna helps. When people learn more about my story, they want to use the sauna for what ails them!

Little did I know that doing something for myself a few minutes a week would spark such an interest and help others. I love talking to people in general, and the funny-looking “floating head” in the waiting room is such an easy icebreaker that it breeds even more conversation. It’s hard to look at my silly head popping out of a “tent” and not say something, or at the very least, do a double take and break into a smile.

What I find so interesting about all of this is how I often go out of my way to educate others about dystonia and chronic pain, when sometimes all it takes is something incredibly simple, and often unintended, to appeal to the interest and curiosity of others. It serves as a reminder that when we live with any challenge in life, as long if we go about our business doing the right thing, not be ashamed of how we look or feel, smile, laugh and engage people, we will always make an impact on someone beyond ourselves!

September is Dystonia Awareness Month. To learn more about this neurological movement disorder, contact the Dystonia Medical Research Foundation. To sign the White House petition to have September formally recognized as Dystonia Awareness month, click here.

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To the Dads of Children With Autism, From a Fellow Dad

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I put my son on the school bus today. He was excited and happy because he enjoys the bus ride to school. The bus pulled up and I walked with him up the driveway and to the bus door. I told him goodbye and after a little prompting, I received a goodbye in return. He boarded the bus and the bus pulled down the street to turn around. I waited at the end of the driveway and waved to my son as the bus went by (I did this more for myself than for him). He did not wave back. 

I am the father of an autistic child. My wife and I have three children: our oldest son is 11 years old, our middle son is 8 years old and our baby girl is 9 months old. Our middle son was diagnosed as autistic when he was 2. As luck would have it, my wife taught as an early childhood special education teacher for several years prior to our son’s diagnosis. She is patient, understanding, caring and loving. The same cannot be said for me. I was quick tempered; impatient and high-strung doesn’t begin to cover it. However, after eight years and counting and through good times and hardship, our family is getting by. 

This is a father’s perspective on autism. I’ve typically maintained silence or vagueness regarding my thoughts and feelings on my son’s autism. I think there are a lot of fathers like me in similar situations. We were raised to be the backbone of the family. We think we should not show doubt or fear, so we bury those feelings and only expose them to our spouses (if at all). Typically we don’t even talk to our friends or family about our concerns because, unless you have an autistic child, you simply cannot understand exactly what it’s like. I don’t mean to imply that friends and family don’t care, only that they may lack the true understanding of the situation. I’ve seen the judgmental eyes of family or friends that seemed to say, “Yes, their child is autistic, but there is no excuse for that kind of behavior. It has to be upbringing or lack of discipline,” or “I cannot believe that child can’t use the bathroom, dress themselves, be quiet, etc.” Once again, this is not out of malice, but misunderstanding. Also, as much as my friends want to be helpful on the subject, guys’ advice is usually oversimplified: “Keep your head up,” “It’ll be all right,” “Rub some dirt on it,” just to name a few suggestions. 

For all these reasons and more, I’m writing this to let other fathers of autistic children know they’re not alone. I know some of your fears and worries. 

I believe I know how you felt when you heard the diagnosis. Maybe you had to hold back tears and be strong. I might know your first concerns, too: Will they ever talk or be able to express themselves? Will they be potty-trained or dress themselves? Will they understand danger or dangerous situations? Will they have friends, and the most heartbreaking, will they understand how much their family loves them? As your child grows and you begin to see answers to your initial worries (that can be good news or bad), adolescence quickly approaches and new questions take hold. Will they ever get to drive a car, play a sport, go out on a date, get a job, live on their own, fall in love, get married and have their own child?

I know you love your children and wouldn’t trade them for the world. I know when people tell you, “Have hope, have faith, pray and God will give you the answers,” that doesn’t console you when you’re changing an 8-year-old’s diaper, stopping them from hitting themselves or watching them cry, unable to tell you what’s wrong. I know what it feels like to be pessimistic. I know and understand the weight on your heart.

I also know you’ll never give up on your child. I know you will fight harder (more therapy, more activities, more time together, more understanding). You will do everything you can think of because you love your child. Then through all the heartache and worry, I know you are rewarded. Every time that child smiles, it will be that much brighter. Every hug you get will be that much tighter. Every time they laugh, it seems that much louder. 

I believe there are no little victories with autism. Every step forward, every improvement no matter how slight is a huge accomplishment — not just for your child but also for you. Children with autism do not have an easy road, but they need their parents to get down it.

I did not write this for pity or praise. I’m writing to tell all fathers out there — I know how you feel. I’m one of you. I’m sympathetic and respectful of you. You are not alone. I believe we all feel the same things. Don’t let those feelings own you. Love your children; they will give you hope. Love your spouse; they will give you love in return. Love your family and friends; they will give you support even when you don’t realize you need it.

Sincerely,

A Dad

P.S. To all the mothers of autistic children, please don’t take offense to this letter. I certainly do not mean to imply you don’t have the same thoughts, feelings and concerns. I could not do anything without my wife. She is the reason I have made it this far. I simply wrote this from a father’s perspective because I think men are less vocal on this subject, and I wanted to give a voice no matter how small.

The Mighty is asking the following: Write a letter to anyone you wish had a better understanding of your experience with disability and/or disease. If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.

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