By Susan Oderwald
Senior Life
Susan Oderwald
Parkinson’s disease is a degenerative illness caused when the cells in the brain that make dopamine stop working or die. Dopamine is a chemical that coordinates movement. Because its symptoms include things like muscle tremors, freezing, stiffness and loss of balance, it is classified as a movement disorder. However, it is important to understand that Parkinson’s disease also can cause constipation, memory problems, depression and a host of other non-movement symptoms.
There is no cure for Parkinson’s. However, medications can help many with symptom management. Because it is a progressive disease, it will get worse over time. We typically associate Parkinson’s disease with aging, but it can affect young people as well.
People living with Parkinson’s disease generally experience a good quality of life, although going through the diagnosis and acceptance phase of any life-limiting illness is difficult.
Those of us who work with people living with Parkinson’s have a saying: ”If you know one person with Parkinson’s, you know one person with Parkinson’s.” What we mean is that the presentation of the disease is highly individualized, and two people diagnosed with Parkinson’s can appear different and experience very different journeys.
Anyone diagnosed with this disease will likely be immediately overwhelmed. There are some important steps to take when you are diagnosed. The first is to build your care team – a group of professionals and supportive caregivers who can help you now and/or later as symptoms progress. This will typically include a movement disorder specialist – a neurologist that specializes in Parkinsonian diseases – other allied care professionals such as physical therapists, speech pathologists, counselors, and nutritionists, and identifying who will be your care partner (usually a spouse or family member). Thinking about and ensuring this group functions as a team will greatly reduce the stress of all the appointments, prescriptions and lifestyle challenges that will come with a new diagnosis.
The person with Parkinson’s is at the center of this team and should always be wholly included in its deliberations and decisions.
It is important to realize that medicine in general, and treatments for Parkinson’s disease in particular, are not “perfect.” It is a practice. Medication regimens, lifestyle adjustments, assistive devices and other treatment options can make finding the right solution for symptom management complicated. There is always going to be some trial and error to see what works and adjustments as the disease moves forward. It is critical that patients and their supporters are actively involved in designing a plan that works for them and not give up or fail to communicate to their team when things are not working or change.
People living with Parkinson’s usually need some professional help at home as the disease progresses. Finding both medical and non-medical support is an essential part of building out your support team as needed.
Finally, seek out only credible information. With a 24/7 news cycle and a multi-billion-dollar scamming industry out there, you will likely start noticing emails and articles on new and breaking research almost every day. Even if this information is legitimate, much of the research reported is initial and years away from the creation of viable treatments or cures.
Seek out sources of information from places like the Michael J. Fox Foundation, the National Institutes of Health or the American Parkinson’s Association. Avoid general information from undocumented sources on the internet and even the advice of family and friends who went through something similar, if only because their experience may not be anything like your experience.
People with Parkinson’s disease have every reason to be hopeful and live full lives, especially if all of us around them are knowledgeable about the disease and supportive on their journey.
Susan Oderwald is care director at the Always Best Care Senior Services Milford Office. She can be reached at
So*******@ab*********.com
or 203-877-1377.
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