I spent my entire life trapped in my own disabled body (thinking I had Spastic Diplegia), unable to do simple everyday tasks that others took for granted, only to find out that I had been misdiagnosed. At the age of 33, I was given a whole new life! As a result of my new treatment for Dopa Responsive Dystonia (DRD), everyday I was doing something new and exciting. Not adventures thriliing to most, but certainly to me. I had never put a frozen pizza into the oven, driven my kids to their activities and hadn’t showered independently in years! Yet, these were my adventrues on my new medication of L-Dopa! And all I could think was, if I went misdiagnosed all these years, then surely there are others out there trapped in their spastic body just like I was. I knew that I had to put myself our there in hopes of “rescuing” others.
Yes, I blog about myself. Yes, I share the excitement about completing simple tasks, that most tweens have already mastered. Yes, I talk about my struggles and that this new diagnosis is “not a cure.” And Yes, there are people out there who think that I am only sharing my journey in hopes of being in the public eye. To get another story, simply for the attention or money. I must tell you, I’m not paid for the interviews I give, but yes I want my story picked up in the media. It’s not because I want the attention. It’s because every time my story makes it into a magazine, news paper or news show, I’ get an e-mail from one of their viewers…
“I am 42 years old and was just diagnosed with Dopa Responsive Dystonia due to your article in The Mighty.”
“At age 37 I have just been started on Sinemet. Your story got me looking into the possibility of no longer fighting to walk. I was first diagnosed with CP around age 12. I am happy to report it feels like a band that has been tied around my legs has been cut.”
“Jean! I am weeping tears of joy right now! My cousin was just here….in person….which is saying something as she was nearly completely immobile and left home only when necessary. Our family has had a MIRACLE! “
“We are grateful to you because without your story, my wife would never know the improvement she has so far achieved. “
“One of my doctors was watching cbs when your story aired. She immediately called me saying she thought I was misdiagnosed. I started the medication 3.5 weeks ago & it has helped me greatly.”
“I walked in front of my mom and older brother this weekend. My mom was so excited she videotaped it.”
“I read your article and I felt as it I was reading about my self…. I have been on it (Sinemet) almost six months now and it is amazing, confusing and emotional. I can walk almost without a limp, I am not tired all the time and my balance is improving. I am going to physical therapy monthly and can’t believe the change (either can my neurologist and P.T.)”
And sometimes, my blogging doesn’t assist in a correct diagnosis, but it offers HOPE to those who no longer have any…
“My daughter’s biggest fear when she was in that wheelchair was— how could she ever get married? She sobbed crying asking how will I get down the aisle? Will one of my bridesmaids have to push me? Who would want to marry me if I am in a wheelchair? These are such hard questions to have to answer to your own child. Your blog gives people hope when Doctors don’t! Thanks so much for spreading the word on Levodopa and reminding us all to count our blessings. Today you are one of mine.”
These are just a few of the reasons why I put myself out there. I find it stressful to be in the media at times, and that plays havoc on my DRD symptoms, but in doing so I have helped 20+ people receive in receiving a correct diagnosis of DRD. When I open up my e-mail and see that someone is walking for the first time, it makes all the added symptoms worth it and I can’t help cry tears of joy. Yes, I understand that some may see my blogging as selfish, but please understand I only do it to help give others the freedom that I now have. And to me that is an amazing gift!
Wow! How can it be six years already?
So much has changed these past few years. I love that I only need to take 3 pills a day, compared to the 15! I love that I've been able to share my story with the world and help others receive a correct diagnosis, like me. And I LOVE that Steve and I were able to have a third child, our beautiful John. So much has changed, yet, the love and support from my family continues to grow. I feel so much warmth in my heart as I reflect on this on such a holy weekend.
Good Friday and Easter Sunday will never be the same for me again. I never believed that a new medication would be the answer to my prayers. And I certainly never believed that I would be able to live a life of independence. How lucky am I?! I've had numerous people who have read my memoir reach out to me and say, "I will never look at Easter the same again."
On this six year anniversary or should I say birthday, I will continue to give thanks for all that God has given me as well as how much Jesus sacrificed for me...for us. May you feel a closeness to the Lord on this very special weekend. Happy Easter!
I haven't blogged in over two months, simply because I've been listening to my body, which was yelling at me to "SLOW DOWN!"
In order to keep my symptoms at bay, I have to get plenty of rest, stay free of illness and keep my stress to a minimum. Well, I was doing fine with staying healthy and getting plenty of rest, but the stress factor was another story. I was stressed about the release of my memoir, my mom was diagnosed with breast cancer (she's going to be fine) and my husband was part of a big lay off at work.
I had far too much on my mind causing severe pain in my muscles (particularly my left shoulder). Having Steve and the girls rub my back, along with using my Thera Cane and stretching was not helping. I've got a really high pain tolerance, but eventually I couldn't take it any longer and had to go to Urgent Care. Ugh, I was NOT happy about that, especially when they decided to run an EKG! Of course all was well, because it was indeed my DRD symptoms telling me to slow down!! So, I temporarily stopped blogging, took more time out of the day to rest, as well as stretch those cranky muscles.
Often times, things happen that we cannot control, but how we choose to deal with them is entirely our own decision. And we have to listen to our bodies!! I'm pleased to say that the knots in my back are gone, Steve is expected to receive a job offer in the near future and my mom is nearly done with Chemo!
As always, thank you for all your support and love!
As you can all imagine, I am incredibly busy with my memoir, but I have to give a heartfelt thank you to everyone who juggled their schedules around so they could be a part of my book launch party in Andover, MN. To say the evening was a whirlwind for me would be an understatement! What a blessing to have a constant line of family and friends waiting to peek at the book that I have been working on for the past five years. What a wonderful surprise to see the physical therapist who taught me how to roller skate, the English teacher who always had a gentle smile and classmate who helped dress me when my arms failed me one day after junior high swimming lessons.
Later, when Steve and I were able to reflect on the evening, I kept saying, "I can't believe all those people came. It's December. The busiest month of the year!" To which he replied, "This was more than a party to celebrate your book, Jean, it was a celebration of your mobility, something no one ever expected."
He was right. It had been over five years since my correct diagnosis, but we'd never formally celebrated it with friends and family. We never took the time as a group to reflect on how far I have come since taking that first miracle pill. So, for everyone who came last night to celebrate with me, I thank you for all your love, support, strength and encouragement you gave me then, and that you still give me today.
If your child took antibiotics for an ear infection and it cleared, would you think they had made up that their ear hurt days earlier? If a friend began taking new medication for migraines, would you question that their migraines were never an issue in the first place? My guess is, no. So, why would someone question an individual who once had limited mobility due to spasticity, who began taking L-dopa and can now walk? This may not have happened to me, but it may as well have. It has triggered a frustration deep inside me that I can’t explain.
Since my story went viral last spring I have received many, many inquires about Dopa Responsive Dystonia (DRD). In fact, nearly two dozen began taking L-Dopa and are seeing significant results! Amazing, right? Even though they are progressing on the new medication, they often ask me questions about my experiences such as how they can gain strength and how to overcame the internal thoughts of can I actually do this?
The other day I received an e-mail from one woman explaining that some people, including her doctor, don’t believe that the medication has been helping her as much as it has. Her physician asked her if she wanted to see if she could go with out her l-dopa for awhile “to see what happens.” To say I was floored would be an understatement. I could feel my blood begin to boil, but then she went on tell me more...Her roommate actually hid her new medication for 24 hours, because he thinks she’s making this all up! In the meantime, she was in lots of pain from muscle spasms and became more immobile.
I had to take a couple deep breaths, because I can’t help but wonder who are these jokers? And, I’m sure glad none of my friends acted like this! Like me, this woman went three decades dealing with mobility issues and had to use a cane and mobility scooter. So I don’t know about you, but I highly doubt that last month she decided to quit the charade and start walking independently.
As I write this, I can feel the stress build in my chest for the woman who is going through this. I want to say Go find a new doctor and make new friends! Luckily, she is getting a new roommate! Thank Goodness!
I felt like I had to share this for a couple reasons. One: to encourage people not to judge others for what they are going through. If you think that this is “all in their head” please do your homework to understand the situation better, and keep the thought to yourself because the journey is hard enough without comments from doubters. And two: to tell my friends thank you for being so understanding during all of my medical adventures! You are the BEST!!!
A special than you to Tom Seaman for going guest blogging again! I have been so busy trying to get my memoir out there, that I haven't blogged in two months!!! That is going to change. I promise that I will have one of my own entries up by the end of the week! I have lots to share with you all!! In the meantime, please read Tom's blog entry below.
From severe chronic pain and morbid obesity to a joyful bike rider!
When you look at this picture, you see a regular guy riding a bicycle; and that would be correct. I am just a regular guy doing a regular, everyday activity. However, this wasn’t always the case. What you don’t see in this picture is a former morbidly obese, depressed, angry guy in severe, chronic pain.
When dystonia entered my life, everything stopped, or seemed to stop, as everything I did was no longer possible for me to continue. Work couldn’t be done. My masters degree that I was pursuing at the time quickly became a lost dream, I couldn’t travel…heck, I could barely sit or stand without crying pain.
Because of my sedentary lifestyle with disabling pain, a terrible diet, and medicating myself with alcohol, I gained a lot of weight. I was well over 300 pounds, a long way from the 190 pounds I weighed when dystonia began. I was a recluse, holing myself up in my house for years, embarrassed and ashamed at what my life had become.
Five years after my diagnosis, I reached a point where I was afraid I might die from the punitive lifestyle I chose for myself; all done for the purpose of avoiding my physical and emotional pain, but my escape actually made me worse so it was a fruitless endeavor. A decision had to be made; continue this destructive lifestyle and suffer the consequences, or make a change a get busy living. I chose to live. I wanted a different life and would do anything to make it happen. Each day I took baby steps by exercising and changing my diet. Each day I added more things to lose weight and also gain greater control of my dystonia symptoms.
Unfortunately, I developed some problems in my back that made walking uncomfortable (my main form of exercise), so I took to riding a bike to get around the neighborhood. I felt like a kid again so I began to ride further. Wow it felt good! While I don’t go very far, maybe a few miles, I do enough to get my heart rate up and break a sweat. Some days I will really push it and get in a good workout, while other days I will roll around and just enjoy the scenery, something I missed out on for way too many years.
To everyone who sees me riding a bike that doesn’t know my story of pain, obesity, and on the verge of suicide, I am just another person out getting some exercise. This is true, but what they don’t know is that this is a guy who almost wasn’t even here at all. Most importantly, they don’t see the immense internal joy I now feel just to be able to sit on the bike again, let alone ride it!
So grateful to be alive, I love riding around and seeing a fox run by or a rabbit staring at me from the bushes thinking it is camouflaged and I can’t see it. I love seeing the colors of the sky change in the evening as I ride. I love feeling the wind on my face, the way the bike banks on turns, and how my heart feels beating through my chest; things I never thought I would experience again after my diagnosis…ever!!
To anyone looking at this picture it appears that I am just a guy out enjoying a bike ride…and you are absolutely correct. For the first time in years, without worry or fear, I am finally just a guy out enjoying the ride…the ride of his life!
Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1.
I love meeting new people and it's also really fun when we have that connection of misdiagnosis and discovering a whole new life to do one tiny pill. Meet Kathy Baquie, one of those new friends. She also happens to be my latest guest blogger. Thanks for opening up and sharing your experiences with us!
Where does my story start?? I guess before I was born. Something happened in the development of me before I was born. Hence I was born with Dopa Responsive Dystonia. Except in 1959 no knew what that was. I grew as much as I could being a normal kid. I fell over an awful lot, told I was just clumsy. Went to sleep very early as I was tired out. I didnt do very well in school, my handwriting was terrible as my hand shook and my fine motor skills were not what they should be. As I went into teenage years and because of my family situation I was told all my syntoms were put on for attention because they werent always visible. My mum did try to get some help for me but no knew what was wrong. I made up excuses for why I had trouble walking around. I would make up lies to stay home from school so I could sleep all day. I had some physio treatments but to no avail. At 18 I had had enough of being told that there was nothing wrong with me and it was all in my head. I got a referral from my local doctor and went through a whole lot of tests. I finally got a diagnosis of Familial Spastic Paraparesis. I felt so euphoric!!! At last someone believed me. Still there was those in my close family that didnt believe that there was anything wrong with me and it definitely didnt come from their side of the family. Anyway I went on to do some travelling overseas, kept working in a full time job and eventually got married. I two of the best daughters ever. But by the time I had reach around 30 I was having a great deal of trouble keeping up with life. I arranged meeting with my then Neuro Specialist. His diagnosis and prediction for my future was to sell my beautiful home in the Hills, no more children, no stress and wait to end up with a walking frame by 45 and wheelchair by 50. I cried for a solid 2 hours. I changed to my father's Neuro Specialist, ( I was so pleased my father was now on my side) who put me on some new medication that helped a great deal but not as good as my current medication. I have stayed with this specialist for 26 years. After being with Professor King for about 9 years he suggested I particpate in a medical trial about rare neurological disorders. It was because of this trial that I finally got the correct diagnosis of Dopa Responsive Dystonia, along with the correct medication. Within a week or so all my syntoms had disappeared and the chains I felt had restricted my body for nearly 40 years were gone. I had never felt more alive. Within a few months I had gone from barely being able to walk to walking about 6 – 7 kilometres a day and the best thrill of all was skiing down the slopes of Mt Buller (snow fields in Victoria Australia). I have continued to take what I now call my happy pills on a regular basis. I just been through Menapause which has played up with my DRD. I dont sleep well with menapause which makes it hard to cope with my DRD. I do the best I can. I hope my story helps others.
Melbourne Victoria Australia.
As you are all aware, I share my journey of misdiagnosis to help others. When I went on the Today Show, I knew that others would see my story and think, that's me! I'm pleased that my guest blogger, Tara Richardson, was one of those people! Over the past few weeks, I've had the privilege of hearing about her improvements, some are small and some are just plain awesome!
It’s been a few weeks since I started taking Sinemet (Carbiodopa/Levodopa) to see if I had Dopa Responsive Dystonia a rare genetic disorder that mimics Spastic Dipledga.
From everything that I have been told about DRD is that if I had it, then I’d see changes, and if I had Spastic Dipledga then I wouldn’t see any changes.
I’m pleased to say that I have seen changes. Some are minor, and some are big changes. Eventually, I’ll be walking by myself like everyone else. I’m incredibly weak since I’ve been using a wheelchair for 20+ years. I need to build up strength in my legs.
I’m enjoying the process, and it’s honestly scary at the same time. I wake up in fear that I won’t improve any further than I have, or I’ve imagined it and it’s not truly working. (crazy talk, I know)
Imagine living with a profound disability with no cure, and you get worse year by year while all your other friends with “CP” are maintaining what they have gained. You are the only one regressing when in fact, you were far better off than them in the beginning.
I suffer from chronic pain/nerve pain due to the imbalance in my body over the 44 years of my life. I’ve had dozens of surgeries to correct my stiff muscles and straighten my feet and wore braces until I ended up in a wheelchair full-time by age 19.
Now imagine that one day you woke up and your friend sent you a story about a woman who had been mis-diagnosed as having Spastic CP for 33 years when, in reality, she had Dopa Responsive Dystonia, a genetic rare disorder that mimics Spastic Dipledga.
I read her story and thought wow great for her that’s awesome. I had never heard of DRD before. A week later, I saw the video Jean Abbott made before & after her medicine and was shocked. I thought that could be me. I listened to her story and watched the video in a blink of an eye my life changed forever.
I quickly contacted Jean on her Facebook page and while I had been waiting for her to respond, I looked up the diagnoses and thought that I probably didn’t have it based on what I read. My mind quickly changed once I started talking to Jean Abbott, she confirmed all my questions and was kind enough to answer them all.
I couldn’t get to the doctor quick enough. I printed off all the information and gave it to my doctor who read it and she did her own research, and she thought it would be worth a shot.
It’s been two weeks, and my life is changing. My spastic muscles are gone, and I can move my feet & bend my knees independently. My balance has improved 100%; I can hold on to things and move around. I have taken a few steps by myself, and my toes are relaxed.
I’m more aware of my body then ever before. The slight change in balance the bending of my knees the ease of movement is all new to me. I’m no longer dizzy when walking.
I’ve been working hard to build up strength in my legs and my core. It’s taking a while since I’ve been sitting for so many years.
I will keep you posted on my recovery…
To learn more about Tara Richardson and see her amazing artistic ability, please check out her website at http://www.taraleerichardson.com
I'm excited to announce my guest blogger...Tom Seaman! I can't think of a better way to kick of Make September Dystonia Awareness Month. I hope you enjoy his post as much as I did.
How do we find ourselves? Get lost!
By Tom Seaman
In the summer of 2001, I developed a neurological movement disorder called Cervical Dystonia (CD). In the very beginning, I saw chiropractors, medical doctors, massage therapists, physical therapists, psychologists, and orthopedists, none of whom helped or even knew what was wrong. Within 8 months and with no diagnosis, I was disabled to the point of barely being able to function.
Utterly frustrated, I stopped all care and began researching the internet like crazy where I discovered cervical dystonia. I then sought out a movement disorder neurologist who made the official diagnosis. Whew! What a relief…sort of. Now what? What do I do with my life now? I had a diagnosis but I was in too much pain to continue pursuing my masters degree and I certainly couldn’t work. Social events were also out of the question. It was just me and the TV all day long. Even worse, no treatments at the time were helping.
So I did the only things I knew how to at the time. I grieved. I cried. I yelled. I retreated from the world. I drank alcohol to medicate the mental and physical pain. I ate a horrible diet and gained 150 pounds. I wanted and waited to die. Melodramatic? Perhaps, but that literally was my reality for 5 years.
Something miraculous then happened in 2006. I got sick! Yes, believe it or not, getting a major stomach flu saved my life. My dystonic body was forced to relax in bed and do nothing. Interestingly, my symptoms receded a bit which helped me think more clearly. Did I want to live or did I want to die? Was there a purpose to all of this? A resounding yes to both was screaming in my head. I realized that I had lived what I now view as the greatest gift ever. For 5 years, I had my life as I knew it taken from me so I could build a better one!
When the stomach bug flew away after 2 weeks, I changed my lifestyle back to what it was before dystonia set in. I ate well, I exercised, I practiced stress management, I saw good doctors, and I forgave myself for the guilt I put myself through for developing a life altering health condition. Within a year, my dystonia symptoms improved significantly and I lost the 150 pounds I gained. Life was fun again! Even though I still had challenges, and still do to this day that I have to carefully manage, I found my purpose...to help others.
I enrolled in a school to become certified as a health and wellness life coach. It took me two years to complete the program and when I did, I had a sense of accomplishment unlike anything in years. I knew exactly who I wanted to work with; that of course being others like me who were living with chronic health conditions.
But it didn’t stop there. I had to do more. Two years later, I published a book! Me…the guy that once rolled around on the floor in writhing pain all day long wanting to die. A miracle? I don’t think so. Just an awakening to a life that went off course for a little while.
You see, I had to get lost before I could find myself. I had to lose all purpose in life to find my purpose, which I now know is to teach and help others. I believe that is the purpose for all of us and we all do it in our own special ways. I just needed the gift of dystonia to show me my way.
As Charles Lindbergh said, “Success is not measured by what a man accomplishes, but by the opposition he has encountered and the courage with which he has maintained the struggle against overwhelming odds.” For me, dystonia was my opposition. Now it is my partner in helping others improve their quality of life and find meaning and purpose.
Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1
Sometimes life can trigger unexpected emotions that one can not control. For me, that was watching one lonely tear roll down my daughter’s cheek as she waited for three of her teeth to be extracted. More than anything, I wanted it to be me laying back in that chair. I wanted it to be me, scared for the pinch of the needles. I wanted it to be me anxiously waiting for the unknown to be in the past. And then it hit me…This is how my parents must have felt at each and everyone one of my painful appointments I had as child. And before I knew it, the memory of the most painful day of my life ran through my mind as though it was yesterday.
As a very young girl facing yet another test, my father stood up by my head and my mother stayed toward my feet. Looking at their brave little girl, a tech explained the test to all of us.
“They will be placing needles into the nerves of Jean’s foot which will send electric currents through her legs. If she feels pain, it means her nerve endings work.”
Without warning, the tech began with my right foot, which caused me to flinch with pain. “It hurts,” I cried. The currents immediately went through my right foot again.
“This time I need you to tip your toes towards your head, sweetie,” the tech informed me.
I obeyed the tech’s request, and cried out in more pain. The cry was bitter-sweet to my daddy’s ears.
“Okay,” the tech said, “We’re done with that foot. Now, we just have to do this on your left foot. Then we’ll be all done.”
“No,” I whimpered as a tear rolled down my right cheek.
My dad bent down and whispered in my ear, “You squeeze my hand as much as you think it hurts, and then I’ll feel the same amount of pain as you. If you do this today, I promise that you will never have to do this test again.” He gently removed the tear from my cheek with his thumb.
“Okay,” I looked at my dad with all the trust in the world.
The technician began again. I held my breath while squeezing my Dad’s rough hands as hard as I possibly could.
As I think back to the fire running through my legs during that horrible test, I can’t help but be grateful that I was the one on the table. Yes, I was a strong little girl who could get through the physical pain, but to be the parent and watch your child suffer through countless tests would be far more than I could ever handle. I not only feel blessed to have three healthy children, but I am also fortunate to have strong, loving parents who never once showed me how terrified they must have really been.