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Interrupted Movement: Life with Parkinson's Disease
Parkinson’s disease can be a difficult diagnosis to swallow. Like many chronic conditions, the name triggers certain images from the depths of the imagination that can be incredibly unsettling. Immediately, you may begin to wonder what kind of effect this diagnosis might have on your daily living, on your relationships, on your life goals. Yet, with proper medical care, and a strong support system, many people with Parkinson’s disease live surprisingly active lifestyles. We hope to provide an updated snapshot of what Parkinson’s disease is and looks like in 2018.
Overcoming the Mental Block
When I was first diagnosed with rheumatoid arthritis, I had a hard time adjusting to the news. I remember sitting in the doctor’s office struggling to keep away the mental barrage of images of disfigured limbs and frozen joints which, back in 1989, was often characteristic of the disease. Several older family members experienced disabling forms of arthritis, and as a young mother of 2 girls, I simply didn't know how I could keep up my responsibilities if I couldn't move my body. In a similar way, Parkinson’s disease has been associated with immobility, spastic tremors, and dementia. However, these symptoms are rarely the whole picture. Now, because of medical advances, treatment is available to slow the effects of Parkinson’s disease. The first hurdle a patient must overcome is the fear of the diagnosis, which can only happen with accurate information about the disease process and treatment.
Cause and Symptoms
Parkinson’s is “a neurodegenerative disorder that affects predominately dopamine-producing (“dopaminergic”) neurons in a specific area of the brain called the substantia nigra.” (Parkinson’s Foundation, retrieved, October 2018). Essentially, what this means is that there is a chemical in your brain called dopamine. This chemical performs different functions within the brain. People with Parkinson’s disease stop producing as much of this chemical, because they lose the cells that make it. In addition to this, researchers have discovered the presence of what they call Lewy bodies in the brains of people with Parkinson's disease. These “clumps of specific substances within brain cells are microscopic markers of Parkinson's disease... researchers believe these Lewy bodies hold an important clue to the cause of Parkinson's disease.” (Mayo Clinic, retrieved, October 2018)
For the majority of people with Parkinson’s disease, there is not a known cause for the loss of dopaminergic cells; therefore it is called idiopathic. It is thought that genetics and some environmental triggers have a role in this process. However, there are other degenerative disorders that overlap in symptoms with Parkinson’s disease. Like other chronic illnesses, the diagnostic process relies heavily on observation of symptoms. Yet, this may be changing fairly soon, because researchers are looking for ways to distinguish biomarkers that can lead to earlier identification. (Parkinson’s Foundation, retrieved, October 2018)
While the scope and severity can vary greatly from one patient to the next, the following symptoms are some of the most common found in Parkinson’s Disease:
Tremor. A tremor, or shaking, usually begins in a limb, often your hand or fingers. You may a rub your thumb and forefinger back-and-forth, known as a pill-rolling tremor. Your hand may tremor when it's at rest.
Slowed movement (bradykinesia). Over time, Parkinson's disease may slow your movement, making simple tasks difficult and time-consuming. Your steps may become shorter when you walk. It may be difficult to get out of a chair. You may drag your feet as you try to walk.
Rigid muscles. Muscle stiffness may occur in any part of your body. The stiff muscles can be painful and limit your range of motion.
Impaired posture and balance. Your posture may become stooped, or you may have balance problems as a result of Parkinson's disease.
Loss of automatic movements. You may have a decreased ability to perform unconscious movements, including blinking, smiling or swinging your arms when you walk.
Speech changes. You may speak softly, quickly, slur or hesitate before talking. Your speech may be more of a monotone rather than with the usual inflections.
Writing changes. It may become hard to write, and your writing may appear small. (Mayo Clinic, retrieved October 2018)
In addition to movement changes, there are associated symptoms corresponding to Parkinson’s disease. The most common include anxiety, depression, and varying levels of dementia. The presence of certain proteins in the remaining dopaminergic cells of the brain, creates cognitive processing problems similar to Alzheimer’s disease. Researchers continue to investigate these proteins, called alpha-synuclein to discover how these proteins build in the brains of patients with dementia and how they can be changed. (Mayo Clinic, retrieved, October 2018)
Regarding Specific Diagnosis
Idiopathic Parkinson’s Disease tends to be the most common and tends to progress vary slowly which means that changes in the severity of symptoms occur over a period of years. On the other hand, there are some other variations of Parkinson’s that a skilled physician will consider as well as other disorders that mirror some of the same symptoms. These include Multiple System Atrophy (MSA), Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), Dementia with Lewy bodies (DLB), Drug-induced Parkinsonism, and Vascular Parkinsonism (VP). (Parkinson Foundation, Retrieved October 2018) The major distinction between these variations and, the more common, Idiopathic Parkinson’s Disease, is in the severity of the progression of symptoms. In some variations, you may experience some of the classic Parkinson’s symptoms, but not all of them. You may experience a quicker onset and intensity of symptoms. Furthermore, you may experience a remission of symptoms. That is why it cannot be stressed enough to receive appropriate and consistent medical care from a qualified physician.
Treatment
Traditionally Parkinson’s has been treated with medications. There are several classes of medications used to treat the disease and you can find discussion about these medications on WebMD. Major types include: Levodopa, Dopamine Agonists, COMT inhibitors, MAO-B Inhibitors, as wells as medications to control symptoms such as apomorphine, benztropine, amantadine, and anticholinergic drugs. (WebMD, October 2018) There is a wide variety of literature regarding these medications, so please see the sources at the bottom!
Emerging medical technology is providing new surgical treatments for Parkinson’s disease. One example, a form of surgery called Deep Brain Stimulation, places a wire deep within the brain to stimulate targeted areas. Some patients have responded positively to this treatment. (Mayo Clinic, retrieved, October 2018) Another possibility, that is being researched, is brain cell replacement using stem-cells, but this is still in the early stages. (WebMD, retrieved, October 2018) In addition to medical treatment, patients have achieved a lot of success with integrating physical and speech therapies into their overall care. (Parkinson Foundation of Oklahoma, retrieved, October 2018) Therefore it is important to build a treatment team that follows your symptoms and negotiates treatment alongside treatment for any other conditions you may have.
Support Your Mental Health
Many chronic illnesses affect the day to day functioning of a person’s life in substantial ways. These changes initiate a grief cycle. It is perfectly normal and expected to have feelings of anger, depression, and anxiety over the changes that are happening as a result of Parkinson’s disease. However, you do not have to allow the disease to take over your identity just because your life is changing. Part of self-care for any kind of chronic condition is addressing the social and emotional changes that result from the symptoms. Depression and anxiety can be a normal part of the grief process, but if you find that you are getting “stuck” in your depression or anxiety- that it is complicating your treatment for Parkinson’s or remains constant for more than two weeks- you owe it to yourself to seek help from a mental health professional.
A good friend of mine, Barbara Hogg, has embraced her Parkinson’s tremors in her art work. She often says, “the worse they are, the better the art is”! She has also taken the time to write about her experiences in a book called, God, Golf, and Parkinson’s. By embracing the circumstances that she could not change, she has allowed new talents to flourish and fill her life. This is a perfect example of what Marsha Linehan refers to as “radical acceptance.” Instead of allowing the struggles of life to make you bitter, use the change to make you better. A good strategy for overcoming loss, is to make a list of the new things you can bring into your life. You don’t have to wait until your favorite hobbies are inaccessible. Start now. Enrich your life with many different occupations, so that if you have to let go of something the loss will not feel as significant.
Reach Out for Social Support
There are many resources provided by several organizations nationwide. One of these organizations is The Parkinson Foundation of Oklahoma. According to Bruce McIntyre, the PFO's Executive Director, "by the end of 2018, the PFO will have 30 support groups (some starting soon) in the state of Oklahoma." These support groups invite medical professionals to speak at meetings providing tips and tools to address symptoms of the disease. Such professionals may include neurologists, physical therapists, speech-language pathologists, and counselors. Other resources provided by the Parkinson Foundation of Oklahoma include "Speak Out!" (16 total) and 28 Parkinson-specific exercise or therapy groups (Parkinson Foundation of Oklahoma, retrieved, October 2018).
Intentional Positive Outlook
As I learned from three decades of overcoming inflammatory arthritis, not every person’s outcome is the same. I never developed the disfigured joints that my great-aunt had as a result of her rheumatoid arthritis. I was blessed with doctor’s that treated my symptoms quite aggressively from the beginning with medications that altered the disease process. One thing I wish I could have told my 38-year-old self is not to be afraid of the future. I wish I could have erased those negative images from my mind knowing that it would not be true for me. While my pain was significant and there were lasting effects on my lifestyle, it did not play out the way I had feared. My life did not end in the doctor’s office. It was remade. By taking one step at a time (sometimes literally), I moved into a future that held for me a master’s degree, a new career, and three wonderful grandchildren. So let’s reimagine what your life with Parkinson’s can look like.
For our first example, Anne Wray is a mom, military wife, and boxer. She also has early onset Parkinson’s disease. In the Parkinson’s Foundation article describing her experience, she claims that, “When I am boxing, running or weight training, I feel like my 'old' self again. Not someone 'too young to have Parkinson's', with a shaking hand, unsteady gait and just awkward!” In addition to her daily activities, Anne is participating in a fundraising marathon for Parkinson’s Disease called "Parkinson’s Champions". She also is part of a research study that examines the effect weekly exercise has on treatment outcomes in Parkinson’s disease. She is an example of how a positive interpretation can allow you to turn your diagnosis into life-changing outreach. (Parkinson Foundation, retrieved October 2018).
Another similar example found through the Parkinson’s Foundation website is Jim Morgan. Boxing may not be his sport of choice, but he and the rest of his family enjoy taking Yoga classes together. They call it Family Yoga. He also stays very busy at his job and working with various outreach organizations. He believes that staying busy helping others helps him keep going. Among the advice he gives in the article he tops his list with, “I’m a big advocate on talking about Parkinson’s. Do not be ashamed to talk about it. Reach out for help and support.” By staying proactive and connected to others, Jim claims that he has prolonged the onset of severe symptoms. (Parkinson Foundation, retrieved, October 2018)
The most surprising example of what life with Parkinson’s Disease can look like can be seen in that of Scott Roehm. After many years of dealing with Parkinson’s symptoms and treatment, he still spends his free time driving sports cars, hunting, and fishing. He also continues to work full-time, although at the time of the article he said he was considering retiring fairly soon. After a successful operation of Deep Brain Stimulation, Scott experienced reduced symptoms which allowed him to go back to enjoying his hobbies. According to the article written about him in US News, “He earned a Triple Trophy badge from the Pennsylvania Game Commission for killing a bear, a turkey and a buck during the 2016-17 hunting season.” While Scott does battle with some of the classic Parkinson’s symptoms, his life is just another look at the new face of living Parkinson’s Disease. (USNews, retrieved, October 2018)
For more specific strategies overcoming Parkinson’s disease, subscribe to my site. We will be taking the next several weeks to dig deep into all the things that are available for people with this condition. You will get notified in your email each time a new article is posted!
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