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.
After living the first 33 years of my life thinking I had Spastic Diplegia, a form of Cerebal Palsey, I was correctly diagnosed with Dopa Responsive Dystonia (DRD). I am on new medication and doing things that I never imagined possible. This has changed the lives of my husband and two daughters. I truly believe that I am living a miracle each and every day. Life can't get any better than this!