Journey to Diagnosis
Diagnosed at 32
My story begins in July 2008. I started to exhibit some odd symptoms, such as a tremor in my left hand, involuntary movements in my arms and legs, and fatigue. At first, I attributed these odd symptoms to being stressed and tired because my wife and I were expecting the arrival of our first and only daughter. As my symptoms continued, I decided to ask my primary care physician what my symptoms meant and if I should see a neurologist. He laughed and said, “as long as your involuntary movements are not bad enough to cause things to fly out of your hand, such as a cup of coffee, you’re fine and should not worry.” I pressed him to better explain my symptoms and to refer me to a neurologist, causing the neurologist to become extremely angry and to inform me I would be referred, but that because of my age, the neurologist would do nothing. My primary care physician quickly became my “ex-primary care physician” and I went to a neurologist.
The neurologist was not much better than my previous primary doctor, dismissing my symptoms and informing me that I was too young to have anything seriously wrong with me and that I no longer needed to be seen. At that point, I was very upset, not to mention scared and I did not know which doctor I should see next. My wife got along very well with her primary doctor, so I decided to go and give it a try. By this point, I was also experiencing pain in my left shoulder, forearm, and hand. I was also experiencing numbness and tingling in my hands. I did make an appointment and went to see this doctor, only to be told that I "may" have a pinched nerve, but there was no doubt I had anything seriously wrong with me.
After also being dismissed by my wife's doctor, I decided to go and see another primary doctor I knew of. This doctor seemed to want to help me. This doctor ran a ton of blood work and ordered scans, all of which revealed nothing wrong with me (I am sure most of us have heard this one before). This doctor diagnosed my symptoms as "Fibromyalgia" and promptly prescribed me pain medication, which did not help at all. My pain was continuing to get worse and reached a point where I was unable to perform my job as a special education teacher and was forced to go on disability leave, which I am still on to this day.
I was greatly disturbed by the fact that I had gone from an individual, who did not get sick with anything and definitely did not call in sick to work or ever imagine going on disability, to an individual who had to be on disability because I was in so much pain and was so fatigued that I literally could not get out of bed some mornings. My family and I had to fight to win short-term disability benefits. In my state, teachers are not legally eligible to receive state and/or federal disability benefits. Since I was not eligible to receive state and/or federal disability benefits, I purchased a disability insurance policy, when I first began teaching, from a private company that specifically sold policies to teachers, consisting of short-and long-term disability coverage. I was initially denied short-term disability benefits, but after my family and I retained an attorney the disability company decided to award us the benefits we were entitled to (funny how this worked out). It was a lot of work, not to mention stress, but we had to have the benefits to survive as a family. Once I had been receiving short-term benefits for two years, the disability company reevaluated me and found that I was eligible to receive long-term benefits because my disability was expected to be permanent. I continue to receive long-term benefits to this day, but I also continue to work in the field of education a few hours a week, in a local graduate school program, because I refuse to allow YOPD to take away the joy I receive from educating others and assisting them with achieving their dreams. Ironically, the only reason I decided to purchase disability benefits when I first began teaching was because my family pressured me to do so. Since I was never sick, I thought I did not need any type of disability benefits and could not even imagine ever having to use them to support my family. Life can be cruelly ironic.
By December 2010, my symptoms continued to worsen and I started to develop new symptoms, such as rigidity in my legs, feet, and back; severe coldness in my feet; excessive sweating; confusion; memory problems; difficulty walking; and difficulty keeping my balance steady. Due to my new symptoms, I had to begin to utilize a cane, in order to walk safely. By the end of January 2011, I knew something serious was going on with me and I needed to find out what it was and stop it as soon as I could. I decided to do some research and located a wonderful primary doctor, who listened and took my symptoms very seriously. This was the first doctor I had seen that really listened to me and took my symptoms seriously. The doctor referred me to a new neurologist and asked that I contact their office immediately, when I was finally diagnosed because this doctor truly cared about me and wanted to make sure I found an answer. This doctor also said the cause of my suffering needed to be identified, so if this doctor had another patient, who exhibited my same symptoms, the symptoms would be easy to recognize and treat appropriately.
I went to the new neurologist and unfortunately, I was dismissed once again and was told I was too young to be ill and that “I needed to county my blessings because I was young and had a good brain.” I quickly realized that this neurologist was not going to help me and that I needed to see someone else. I went on to see another neurologist at a major American university, who told me I “definitely had neurological problems, but that there was NO diagnosis that fit my symptoms.” I then saw another major neurologist, in one of America’s largest cities, only to be dismissed once again. This neurologist not only dismissed my symptoms, but made excuses to explain each of them that were not based on the facts of my illness and the progression of my symptoms. When I asked this neurologist if I could possibly have Parkinson’s disease, the response I received was, “you could not possibly have Parkinson’s Disease” (as she laughed at me) and “you just need to adopt a good stretching program,” and everything would be ok.
After seeing this last neurologist, my family and I were very upset by the lack of answers; my symptoms were getting worse; and I was reaching a point, where I and many members of my family believed I was going to die before I was appropriately diagnosed. In October 2011, I was seeing my pain management doctor for help with the pain I was experiencing throughout my body. I was also seeing this doctor for my fatigue. I asked this doctor to refer me to a good neurologist that could actually make a diagnosis that would explain my symptoms. This doctor informed me there was a neurologist that was very thorough and would do everything possible to develop a diagnosis that fit my symptoms. This doctor referred me to the neurologist and on October 27, 2011, my wife and I went to my first appointment.
We were instantly impressed with how this new neurologist paid close attention to, not only the information my pain management doctor provided on the referral, but what my wife and I had to say about my symptoms, how they had progressed, and how they had impacted our lives. The neurologist did a thorough examination, listened to all we had to say about the onset and progression of my symptoms, and watched me walk (without my cane) up and down the hallway of the office. Once the neurologist completely finished with the evaluation, my wife and I received the findings. Before the neurologist began to speak, we decided to be completely honest and said we had reached a point where it did not matter what I was diagnosed with because we knew my condition was very serious and we had prepared ourselves for the very worst. On November 11, 2011, the neurologist took a breath, looked me right in the eyes and said the words that would change my life forever, “You have Parkinson’s disease and because you’re so young, you technically have Young Onset Parkinson’s disease (YOPD). I would like you to try a medication and if it helps your symptoms, we can confirm your diagnosis and we will know for sure.” This was the first time I heard the words, “Young Onset Parkinson’s disease.” My wife and I were very happy to know what had been causing me to feel so horrible over the course of the last three years. Do not get me wrong, having YOPD is not something that either my wife or I wanted me to have, but we were excited to finally know my diagnosis because we finally knew what was wrong and could make a plan to deal with it. The neurologist also said, “Being able to give you an answer and see how good it makes you feel, has made my entire weekend, already.” I replied by informing him that finally knowing my diagnosis, made my lifetime!
I have learned a great deal of things from my journey to receiving the diagnosis of YOPD. I have learned that when our medical community does not give you answers, you have to be willing to search for answers on their own. I have also learned that when doctors dismiss your serious and life-altering symptoms, you must continue to forge ahead until you locate a doctor that takes you seriously and wants to help. In addition, I have learned that when you know your body and know when something is seriously wrong, do not accept any doctor telling you that your symptoms are “all in your head,” or “you just have a low pain tolerance,” or “you just need to adopt a good stretching program,” which are ALL excuses doctors gave me, when they could not find an appropriate diagnosis. Furthermore, I have learned what acceptance truly means and how to utilize it to go on with my life, even when my family and I have been devastated by a diagnosis, such as YOPD. Lastly, I learned to be patient with myself and to take life as it comes, living each day, one after the other.