My Journey
DIAGNOSED AT 36
My journey began over two years ago when, upon waking, I began having difficulty moving and the initial “getting going” was very troublesome. I saw my primary care physician (PCP) and he informed me that it looked like I had Osteoarthritis; not an uncommon diagnosis for a middle-aged mother of three. I began taking an Ibuprofen regimen.
As time passed, I saw my PCP several more times because the medication was not working. He referred me to a Rheumatologist, in the belief that I still had arthritis because all other tests were normal. A week before I was to see the Rheumatologist, a new symptom emerged that couldn’t be ignored. A tremor started on my left hand mainly affecting my thumb and index finger. I contacted my PCP and he assured me that everything was ok, but ordered a CT scan and MRI because of a family history of MS. All was normal and I saw the Rheumatologist who reviewed my medical history and many test results. The doctor did not really know what to say. Here was a young woman with a tremor that moves like a snail sitting in front of him with perfect x-rays, blood tests, and imaging results. He sent me home with a “trial” diagnosis of Fibromyalgia and a large bag full of pills that made me sick, including a harsh one for depression because I started crying in his office. This also rendered me with an emergency appointment to a Psychiatrist. I even began to think I was completely crazy. I tried this for five months.
On September 24th, I walked in to my PCP’s office and told him, “I have had enough.” One look at me and he was on the phone with the Chief of Neurology, who brought his entire team down to see me. After viewing my vast medical history with my PCP and conducting an extensive neurological examination, the doctors agreed that I should be hospitalized for some trial medications that might work for me. I still did not have a diagnosis, but inside I felt this was the path I was looking for.
They only needed to try me on one medication. With the first dose of Carbidopa-Levodopa, I felt an improvement that I thought was completely impossible. I felt better and more in control than I had in over a year. Second dose, I was walking and turning better. Third dose, my tremor ceased completely for five hours. I was elated with these results. On September 25th my life changed when the Neurological team came for their rounds and saw my improvement. I was suddenly numbed inside by the silence in the room and all 15 of them staring at me. The Chief of Neurology quietly sat by me and, with a concerned expression, told me that because I had such a dramatic response to the medication, it was confirmed that I have Parkinson’s disease. I had only very briefly heard of this disease before. He told me that when he viewed me walking, my arm did not swing as it should, my gait on the left side was very different than my right, and I had more difficulty with my left hand and foot than my right. I showed positive signs of rigidity, decreased facial expression and bradykinesia; this could only be because of the lack of dopamine that is produced by my brain.
The magnificent medication that was given to me in the hospital did not make its way home with me. The doctor informed me that there is a window of time that Sinemet works well and then there can be complications such as ON/OFF periods, where it doesn’t work properly or at all, and let’s not forget dyskinesia. He said it would be easier for a physician to give this medication, which will only work its magic for 5-10 years, to someone that only has an approximate lifespan of 5-20 years. He did not think it was a good option for me, a young mother of three. I came home from the hospital and spent the last couple of months believing that, until scientists find a better alternative, I could expect a lifetime of medication cocktails to try to control the symptoms, and living at 70-80% efficiency.
Through the wonderful education and suggestions from APDA, and better communication with my doctor, I found out that despite Sinemet’s side effects, avoiding it completely isn’t always the best route for everyone. These terrible side-effects don’t happen to everyone, and if they do, alterations can be made to the prescriptions, and there’s also DBS surgery. I spoke with my Neurologist about my quality of life. How debilitating it is to have to force myself to walk, not to mention embarrassing. Today is December 1, 2010 and my prescription of Carbidopa/Levodopa SR should be arriving by mail any day. My doctor and I both find this encouraging.
APDA helps thousands of people each year who live with the burden of Parkinson’s Disease––and we depend on the generosity of donors like you.
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