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