Shelly Svoboda, M.D.
Each year, more than 50,000 people are diagnosed with Parkinson’s disease and countless others suffer strokes or develop other progressive neurologic conditions.
But to measure the true magnitude of these diseases, you have to factor in families and friends of these people, too.
There’s almost always a spouse, or a partner and kids. So you double, quadruple or more that number because it affects them all.
For all the time spent treating diseases there never seems to be enough time to talk about how families and relationships are affected by the diagnosis of a chronic condition, Parkinson’s can be a family tragedy, or it can be a way for a family to rally and come together.
Caregivers v. Partners
For a person newly diagnosed with Parkinson’s, Lou Gehrig’s disease, Multiple Sclerosis or recovering from a stroke, there’s a lot at stake in how the people around him or her respond. One of the first mistakes family members can make is to immediately take on a role as caregiver.
The reason I don’t like the term caregiver is because it can alter the balance of the relationship between the affected person and his or her partner. Maintaining an attitude of teamwork in addressing the challenges precipitated by Parkinson’s disease seems to empower both the person with Parkinson’s and the family.
Stages like grief
When a person is diagnosed with Parkinson’s or another neurologic condition, they often go through a process similar to the stages of grief – denial, anger, bargaining, depression and acceptance.
Most of the time, there is sadness. But there is also seeing what you can still do, seeing how kids can step up to the plate, how each person handles their new role. A partner can create a positive effect.
For my patients, denial can be one of the most difficult and impairing problems. Rejecting or ignoring the diagnosis can lead to isolation, depression and often inadequate medical care.
Denial of the diagnosis of a chronic disease, such as Parkinson’s, can create real tension between family members, friends and even employers.
One of my patients did not tell his boss or coworkers about his Parkinson’s disease until he realized his boss thought he was intoxicated. While there are always situations when maintaining personal and medical privacy is important, letting those close to you know about your diagnosis can be helpful to you and them.
Anger
Anger can be present in each of the stages in the process toward acceptance. Family and neighbors, particularly children, can express or manifest anger about the diagnosis or even direct it at the person who has been diagnosed. Children can have a difficult time understanding or can be embarrassed by a parent’s tremor or other movement abnormalities.
People think, “Why me? Why my mom, or my dad?”
That anger can come out as resentment, both on the part of the person diagnosed and his or her partner. Exasperation at not being able to do what you had easily been able to do before can turn into frustration, then anger. Partners can become angry because they are overwhelmed – by the diagnosis, by worry about their spouse and about the future. This anger can be destructive to relationships already strained by the challenges of facing the disease and its symptoms.
Unfortunately I see it every day, both in my patients and their families. It can be one of the most difficult obstacles in the process of acceptance and moving forward after diagnosis.
Anger can also complicate depression, a common problem in Parkinson’s disease. At least 50 percent of people with Parkinson’s have depression. Mood disorders are often missed by the medical provider or the patient and his family, and go untreated. Depression can disrupt sleep, which can exacerbate many symptoms of the disease. At times, severe depression can mimic dementia.
In most cases, depression is successfully treated with medication and/or counseling. It is important that the patient and his or her family be in tune to the emotional toll Parkinson’s can have and that they talk to their provider about this.
Moving on
Acceptance of the diagnosis does not mean resignation. It may be the last stage of grief, but it is the first step for moving on and making the most of life.
Many people do learn how to positively cope with changes. Symptoms of the disease change and can become more challenging over time. Attitude can be as important as medication for the person with Parkinson’s. Engaging with family members in both old and new ways is important.
Continuing to strengthen the communication and connection with your family is so important. For those with a loved one with Parkinson’s disease, it can make all the difference in their world.
Parkinson’s Resource
theparkinsonscoach.com An online resource that guides individuals and families and helps them respond more effectively to the challenges of Parkinson’s.
Parkinson’s Disease For Dummies, a book by Michele Tagliati, Gary Guten and Jo Horne.
Dr. Svoboda is a neurologist at The Corvallis Clinic. She can be reached at 541-754-1274.
