Page created by: Carol Romig

Carol was diagnosed with Parkinson’s Disease in 1994, 26+ years ago, after pointing out to her family doctor that her pinky finger had developed a tremor and her right foot kept walking out of her shoe while her sock kept slipping down. He sent her to a neurologist who performed tests to rule out other possible causes and then gave her the diagnosis, which wasn’t a death sentence, but a life sentence trapped in a prison created by her own body. She knew very little about the Disease, only that two of her maternal grandfather’s brothers had been diagnosed with Parkinson’s a long time ago and they were not doing well. She didn’t really pay attention to the neurologist when he attempted to reassure her that she would probably progress slowly in severity of the Disease and would have years of relatively decent health with the Parkinson’s having a minimal effect on her lifestyle. He also warned her that she would likely have a difficult life and could suffer tremendously before dying of something else to which the Parkinson’s had contributed as a catalyst. He was correct in his prognosis of what the future would bring for her. The first ten years were uneventful, but her symptoms were gradually increasing in severity and frequency. She had more and more difficulty walking and by 2002 had seen her last tax season and been accepted for Social Security Disability. She experienced a variety of symptoms in the next ten years, all unpleasant and most of them debilitating. She was having trouble completing every day tasks and her periods of being “frozen” (her name for the crippling inability to move, while at the same time shaking so badly she found it hard to sit in a chair with no arms for fear of falling off.) These periods would sometimes last for hours and always ended with Carol abruptly breaking into a drenching sweat . Her neurologist suggested she was a candidate for DBS, deep brain stimulation surgery in which leads are inserted into certain areas in the brain which were controlling her movements and then attached to a generator which would power the device. She was afraid of facing surgery, but the alternative was becoming unbearable, so she agreed to the procedure. For the next 4+ years the Medtronic device performed as advertised, allowing Carol to have a somewhat normal lifestyle. She was able to walk with aid from a cane or walker and her speech was still understandable to a large degree. Her lack of balance was becoming a problem, however. She would fall often during the day, sometimes just turning around. In 2012 she finally fell hard enough to partially break her hip and had emergency surgery to replace it. She didn’t know if it was the broken hip or the additional burden of Parkinson’s on her body, but she wasn’t ever really able to walk again. Jumping ahead to the present, in 2017 Carol’s current neurologist declared that the DBS had done its job, but it really wasn’t functioning at a high level anymore. It would remain because even at a drastically reduced efficiency it gave some relief. Carol was fortunate because the batteries in the Medtronics generator are usually expected to need replacement after around 5 years. Hers was still operating after 7 years, but he said it should be replaced before it became an emergency procedure. So last summer, after much testing and turmoil (which will not be detailed here—suffice it to say that Parkinson’s favorite booster is stress, and Carol had enough stress with that replacement surgery to last a lifetime.), Carol once again has a fully functioning generator, but not before she managed to complicate the process by face-planting on the ceramic tile in the kitchen and ended up looking like she had sustained a violent beating and loosening some teeth which are still loose today 7+ months later. Currently, in 2018, Carol’s neurologist moved her classification to Stage 4 Parkinson’s Disease and that’s about all she wrote! Stage 4 sucks big time because all the symptoms that are most annoying and make it almost impossible to care for herself push to the forefront, appearIng capriciously— the lack of balance, not quite making it to the bathroom in time, producing enormous amounts of drool, coughing uncontrollably when eating anything, choking on even little bites of food, needing someone to help her dress and undress, inability to concentrate for even a short period of time (making reading a book or magazine, which used to be avidly consumed, now unthinkable), losing words, losing the ability to understand and comprehend what she’s reading, inability to memorize, poor judgement and planning grandiose schemes and becoming depressed and backing out when reality inevitably sets in, purchasing unnecessary items, emotionally unstable, crying at anything, anytime, depressed— feeling left out, neglected, unloved, ignored, paranoid, etc., etc., etc. It seems like Stage 4 symptoms are endless! Carol says that the symptom which stands out above all the rest is not her inability to walk and her screaming from the vivid dreams she experiences —not the too-real hallucinations or her lack of facial expression— not the knowledge that her husband days on this earth are numbered and she could be faced with her killer at any time. She’s learned what that first neurologist told her 26+ years ago is right on the money—Parkinson’s Disease is not a death sentence—it’s life in a maximum security prison, where you’re allowed to go on living, but you may not wish to do so. Carol’s had many good things happen to her in her lifetime which she could not have had if she had gotten a diagnosis of cancer instead of Parkinson’s, but those good times have been tempered lately by the difficulties involved with doing anything other than sitting in her rocking chair, afraid of becoming a burden on her family and forcing them to place her in a home where they can take 15 minutes every couple months to visit and convince themselves that she is better off because she is receiving good care. Thus goes the typical life of a Parkinson’s sufferer. Oh —Carol wants to share with you her worst symptom of all of those she’s been subjected to over the years—her inability to speak so that people can understand her. She has had her voice taken away, both literally and figuratively and she feels like that has been her death sentence all along.