How did you find out that you had Parkinson disease ? I have an appointment with John Hopkins on October 19th? There must be a better doctor and hospital with a closer date than October. I'm in Richmond Virginia and the doctor was horrid at MCV. He just wanted to deal with th e tremors and not the short term memory loss, which is terrifying. Any info would be helpful.
I had been having problems with very slight tremors for about 2 years before I was diagnosed. I went to a neurologist who didn't think it was PD, but I was monitored every 6 months after that. When I started having balance issues and loss of sense of smell, then I was diagnosed. By that time I wasn't surprised.
I was "officially" diagnosed in 2014 at 60 years old. Prior to that I was experiencing symptoms for about 5 years, gradually, fatigued, anxious. never feeling rested, becoming irritable, short tempered, intolerant and weepy. MY handwriting became smaller and difficulty using the keyboard. Walking was slow, right leg dragging, minimal right arm swing. I have always been VERY active, teaching aerobics and spinning classes up until 2005 when I began graduate school to become a physical therapist at the age of 51. During grad school I was under a lot of stress and school did not come easy for me. I attributed it to being an "older student".
I continued to take high intensity exercises. I began to struggle and noticed that my right side of my body didn't feel right, heavy and difficult to control. I remember get extremely frustrated. I became concerned that there was something wrong...when did I get so out of shape? I had an "episode " in 2012, I was extremely fatigued and anxious. My right arm and leg felt wooden. I went to the ER thinking I was having a stroke. All tests were normal and I was referred to a neurologist who said I was fine, just aging. Not a good enough answer for me. I had also been seeing a holistic MD and we tried supplements and hormone replacement therapy, which helped a bit bit still something was wrong in my mind. I began to research my symptoms and as a physical therapist, self diagnosed that I suspected PD. I went to my holistic doctor and told him my suspicions. I had researched enough that I knew I had to see a movement Impairment neurologist. A regular neurologist is not always well versed in movement disorders and YOU know your body best.
Upon my first visit with a movement disorders MD he diagnosed me with PD based on my symptoms and observations of gait. How ironic that I'm a physical therapist and have PD. How could this be happening to me?
I had a brain MRI just to rule out any other possibilities which was normal. I began on medication and continued to exercise. My medication has been changed several times and will continue to change but I exercise daily, walking with walking sticks to encourage reciprocal gait and arm swing, spinning classes, pilates and yoga for flexibility, strength and clearing my mind. I hate having this disease and don't know what the future holds, but do any of us? I have accepted that I have PD. I am still Lilly. So please my PD friends listen to your body, take care of your body and mind, exercise, read, be active, take each day as a gift, don't be embarrassed, ask for help, get support from loved ones, educate others about PD, demonstrate that you can have a good quality of life with PD. I also have bad days accept that I'm having a bad day and tomorrow will be different. I'm "out of the closet with my PD" . I love the phrase..
"PD is not a death sentence it is a life sentence. Take care of yourself.
I suspected something was wrong about 20 years before Dx, but didn't know what. I lost my libido and memory for new material. I had an MRI and two 3 hr tests done by a PhD psychologist. The symptoms were attributed to Menopause and aging. Not OK with me. In 2015 I experienced a tremor and my GP casually said it was Essential Tremor. I went to a General Neurologist and given that my walk was off, my handwriting was tiny, my tremor was "Resting Arm" type and the aforementioned symptoms and other non-motor problems I was diagnosed with PD. Initially a relief, but now that I see what PD can do it's a struggle to accept. Exercise and social interactions help me cope.
My husband was not a typical PD person. He didn't have the tremor. He was very athletic and started experiencing fatigue, then numbness and tingling, then SOB and chest tightness, then pain that started in his hips and worked down to his feet and in most all of his joints. Then he started getting clumsy and falling, he continued to get weaker, then his memory started going, he went from an unsteady gait, to needing a cane and then a wheelchair. He lost bladder control, had Reflux, changing vision, but when I realized that his Night Terrors were in fact Rem Sleep Behavior Disorder, I asked his neurologist to try him on a round of PD meds. The neurologist didn't feel he had PD, but also ordered the DAT scan. The meds helped and the DAT scan came back positive for PD. He started seeing physicians in 2005 for his symptoms, even saw a total of 5 neurologists, all of whom took a look at him and sent him packing. They all asked why he was in a wheelchair and we said that is why we were there.... to find out why he is in a wheelchair, why he can't walk. My husband was diagnosed in March of 2018. I managed medical facilities for almost 30 years and we had some of the most frustrating and bad experiences trying to get help for my husband. The saddest thing is that the PCP, on several occasions, suspected PD, but the neurologists, without trying medication or having the DAT scan done, sent him away. By the time he was diagnosed, he was pretty advanced.
Good luck. But if you suspect PD, request a trial on PD meds. If you have PD, they help. If you don't have PD, they don't help at all. I read that on several of the sites doctors use. I just don't understand why Neurologists don't practice as their Medical Journals suggest.
Every neurologist is not created equal. Try and find a Movement Disorder Specialist. They really know PD and how to use all the meds to your advantage. Call the National Parkinson Foundation Hotline for a referral in your area.