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My New Journey
Posted on December 06 2013
It all started one morning in December, 2007. I was taking down all the Christmas decorations with the new found love of my life. As we were packing away precious ornaments and new holiday memories, I had this overwhelming feeling I was going to fall over so I immediately sat down. It was a strange feeling, a feeling that I cannot really explain in writing and one I will never forget. After it subsided I just chalked it up to reaching, bending, and just plain losing my balance or getting light headed. Oh boy....little did we know!
As the days and months passed by I would get that same strange feeling on various occasions. It started to come and go on an intermittent basis and then I started having problems with my vision. I had difficulty focusing on anything with a pattern, and I mean anything, as well as bright lights especially if they were flashing. A striped shirt, the shade or light shining through mini blinds, walking down long, tall hallways or isles in stores, lane markers painted on the streets and highways were sure to immediately start massive tremors. The dark and light contrast indoors anywhere made me feel as if I was losing my balance so I started walking closer to the walls just in case I needed to hold onto something and I was picking focal points on the bumpers of the cars ahead of me to make myself feel secure while driving. Eventually each day was a challenge to get through let alone drive anywhere.
One day I woke up and decided that it was time to see a doctor. Enough is enough right? So I visited my family doctor and he prescribed a patch for motion sickness thinking that was it. Yeah, right! Needless to say that didn’t work so he referred me to a Neurologist. I was frightened, a Neurologist? What could be wrong? I was scared but was looking forward to figuring this out so I could get back to normal. The day came for my visit to the Neurologist and after being examined she finds nothing out of the ordinary. “You are just stressed out”, she said. Maybe you would benefit from seeing a psychologist. Oh lord, just what I need! I’m doing this to myself?
After considering what she recommended and speaking to my loved ones, I sought out a second opinion. During the time in between seeing the 1st and 2nd Neuro I had yet another symptom arise, the dreaded new twitching and shaking of my right hand, and sometimes my head. I absolutely thought I was losing it! I knew something wasn’t right but I felt like the doctors weren’t listening to me. My appointment with the 2nd Neuro came and I knew that this doctor would find something, she’d have to. Her opinion was that I needed a break, so she pulled me out of work for a few weeks to regain balance in my life. It was a nice little vacation in a roundabout way but didn’t help. So, it was on to yet a 3rd opinion, and then a 4th. I returned to work and just learned to cope, but it was difficult. This same scenario kept playing out, in was a merry-go-round of symptoms coming then going, with new symptoms each time lasting longer periods of time before they would disappear again. Needless to say, I eventually saw Neurologists, a Cardiologist, Internist, Physical Therapist, ENT, Neurological Ophthalmologist, and an Auditory Specialist. I had CAT Scans, MRI’s, autoimmune testing, blood work, seizure tests, and went through weeks of physical therapy for regaining my balance and learning to get my eyes to converge again in order to work together with my brain.
At the time I was juggling a new relationship, being a single mother, working full time, trying to keep up with my kid’s education as well as their extracurricular activities and was determined not to let whatever this was take over my life. My family and friends were my rocks, and I managed to get through about 6 years of the roller coaster ride. I mastered hiding my fears, my emotions and my symptoms from the public. Life went on, good things were happening too. I was extremely fortunate. The love of my life proposed to me and we were married, the children were all growing up and doing well, and I had a great job that I absolutely loved. I thought, I got this! I was on several different medications, for the time being they worked and I was able to carry on my life. But then the dreadful day happened. My tremors started breaking through the medications I was taking and they were becoming worse. At this point I had several different labels as to what was going on inside my body but was told none of them had anything to do with each other. I had an inner ear lesion, essential tremor, balance and gait issues, peripheral neuropathy in both my hand and legs and a severe vitamin B-12 deficiency.
Then one day I left for work as I usually did, managed to get almost on the freeway and my tremors were so bad I couldn’t drive. I pulled over into a parking lot hoping they would subside. No such luck! They progressively got worse by the minute. I was scared and alone, stuck in a parking lot crying hysterically. Once again my husband and my daughter came to my rescue. They insisted that I return to the doctor. Eventually I did and she pulled me out of work again, reported my health condition to the DMV and had my driver’s license suspended. I have not been back to the office since nor have I driven a vehicle.
After years of seeing doctors and no real diagnosis my husband stumbles across an article in the local newspaper. It featured a group of Neurologists at one of the more well-known hospitals close by. He shared the article with me and suggested I call and make an appointment.
On April 25th, 2013 my husband and I set out to see Dr. Thakkar, Neurologist, Parkinson’s disease Specialist and Movement Disorder Specialist at Hoag Hospital. We met with the doctor, had an examination, he read all of my notes and medical records I had armed myself with and simply states, “don’t freak out on me just yet but I think you have Parkinson’s Disease. Let’s get a DATScan done on you and see what it shows.” I had the DATScan completed and on Friday, May 10th, 2013 it was confirmed, I have Young Onset Parkinson’s Disease. It was bittersweet. I wanted a diagnosis to all these crazy, life altering symptoms I'd had for years, something we might not like but something we could learn to deal with and battle. Well, I got it! It’s time to start that battle and My New Journey.
I cannot thank my family and friends enough for standing by my side on this roller coaster ride. They have all put up with endless journeys to the doctors, have been the dry shoulder to cry on, the chauffer, the punching bag, and that extra set of arms to hug me when I need it most. This new journey will affect us all in different ways and is sure to challenge us. Thank you all for loving me and supporting me!
To my husband and my 4 children, an extra special thank you for all you do, for allowing me to be myself and not feel like I need to hide, for laughing with me, crying with me and for fighting this disease with me. David, I want to thank you for your unconditional love and support, and for taking care of me and our family. XOXO