Early Diagnosis Matters
Carolyn Allen Zeiger, Ph.D.
and spouse of someone with Parkinson’s Disease
In Parkinson’s Disease, early diagnosis does matter—for some obvious reasons, and also for reasons that are rarely discussed.
The question I always hear people with Parkinson’s (PWPs)—and their spouses—ask about someone else with PD is not, “How long have you had PD?” but “When were you diagnosed?” Given that there is no definitive medical test to confirm the diagnosis, the delay between symptom onset and diagnosis is generally a few years. The thinking used to be that an early diagnosis didn’t matter. After all, at this time it can’t be cured, it’s going to progress, and perhaps it is best to delay the use of dopamine replacement medications since they only provide symptom relief and in addition, they tend to lose their effectiveness over time. Generally unstated, is also the thought that early in the progression of the disease it doesn’t have a big negative impact on the patient, or his life in general. He’s doing well enough to get by. But is he or she? And what about the spouse or partner?
Fortunately, more doctors are focusing on early diagnosis. But not for a reason that I find compelling: the impact of PD on our most intimate relationships—spouse, partner, lover. So many times I have heard, and experienced myself, the painful impact of undiagnosed PD on our closest relationships. Sometimes the impact is so great as to mean the ending of even long-term marriages when unidentified symptoms become burdensome or sources of ongoing conflict.
The precise source of the problems varies depending on the varying symptom patterns. Here are just a few stories:
Facial masking. A wife wept as she told me, “He never smiled at me anymore. I kept asking, are you angry with me? Don’t you love me anymore? “ He didn’t know what I was talking about. Finally he did get angry. “Just leave me alone! Nothing is wrong.” She began to pull back; he responded in kind. A long time, close and open relationship became distant and closed off.
Fading Voice. When the PWP can’t be heard, he feels ignored, or is convinced that his partner has a hearing problem because he is not aware that his voice has become soft. His speech might be slurred and hard to understand as well. His partner becomes impatient, and perhaps a little embarrassed, so she begins to speak for him, the PWP pulls back, goes silent and a destructive pattern has been established.
Apathy. Partner: “Get off that couch and DO something! All you do is sit around.”
PWP: “But I don’t feel like doing anything.”
Partner: “If you would just get moving, you would.”
But no amount of either nagging or kind encouragement makes a difference. The spouse starts doing things by himself because “Nothing I do gets her moving, and I don’t want to stay home all the time.” Both are lonely.
REM Sleep Behavior Disorder. During the night, a man is awakened by his wife screaming and swearing at him. He’s completely shocked and furious. “I didn’t do anything to deserve that!” When he wakes her up, she doesn’t have any idea what he is talking about. Another PWP punched his sleeping wife—convinced he was actually “saving her from a gorilla”. Of course the gorilla was in a dream that he was unknowingly acting out.
Of course, symptoms interact and exacerbate each other.
Foot dragging combined with fragmentation of sleep at night and daytime fatigue can lead to frequent tripping and falls, injuries that put a burden on them both, and lead to injuries and/or health problems for the partner as well as the PWP.
In all these scenarios, the accumulation of seemingly minor symptoms can lead to a major disruption in the relationship. The partner with PD feels constantly scrutinized, unfairly criticized, and nagged. The care partner feels ignored, disbelieved, and abandoned. Over time, both partners may feel mistreated or simply neglected. The distance and constant tension of conflict, even low-level conflict, erodes the intimacy in the relationship.
One of the areas where couples experience the most pain is in the most intimate relationship: sex. Many aspects of PD can interfere with a couple’s sex life. They include fatigue, apathy, loss of erectile function, reduced libido, and anxiety. All are neurologically based symptoms that can appear to be psychological (and might be that as well!), or stem from something going wrong in the relationship. Some of the physical symptoms such as awkward movements, loss of bladder control or drooling can be embarrassing or repellant to either one of them. The result is that either partner may pull away or give up. Talking about it is important, but isn’t sufficient to solve the problems when the cause remains a mystery to them both.
In talking to both PWPs and their partners, I very rarely hear about a doctor inquiring about a couple’s sex life—before or after diagnosis. Sometimes younger clinicians assume that an older couple doesn’t have a sex life any longer. Or the couple might think they are just “too old” now, so they don’t even think to tell the doctor. For younger couples this can be even more disruptive to the relationship. As a psychologist, I know this is a difficult subject for any patient to broach, whatever their age or stage in life, and so it is seldom addressed.
What can be done?
More doctors understand that PD is more than a movement disorder. Some are taking a whole-person focus and inquiring about your whole life. This may seem odd or inappropriate—¬ sex is not what you came in to talk about—nonetheless, it is invaluable. You can help the clinicians out by telling them everything that is bothering you, whether you consider it physiological or psychological. Because my husband’s symptoms were more autonomic than motor, no doctor would consider evaluating him for PD, even when asked. Nevertheless, because a nurse asked us to tell her everything we were concerned about, the interview revealed the pattern of autonomic as well as movement related disorders that characterize PD.
And after you receive a diagnosis, continue to report all your concerns—both partners’ concerns. Because the PWP is often not aware of his symptoms, the perspective of those closest to him is essential for both diagnosis and selection of the best possible treatment of symptoms. Also what bothers the partner may not bother the PWP and vice versa. Both of you count.
Read books that focus on all aspects of living with PD, such as Brain and Behavior by Joseph H. Friedman, MD, and 100 Questions and Answers about Parkinson Disease by Abraham Lieberman, MD. Read and contribute to this blog and others that focus on PD.
Talk about your relationships in support groups. I have found other members are so relieved to have someone bring up difficult topics, to know they are not alone, and are grateful to other members who share ideas and approaches that are helpful.
Have your support group leaders bring in experts to talk about the impact of PD on relationships—including sex. When I have given such talks, some members begin to talk openly while others sit quietly listening. Participants share their pain, fears, confusion, guilt, and then sigh with relief as they come to understand what is going wrong and ways to address it. Afterwards, both the quiet and the talkative participants tell me how much it has helped them.
Share this article with neurologists to help them understand more about how PD impacts relationships and the value of early diagnosis. We health professionals truly want to be helpful, and to do so, we need to educate and consult with each other.
Medication may provide “only” symptom-relief, but relief can be essential to restoring and preserving your relationship. Also, treatment is more than medication. It includes exercise. Exercise of various kinds has been shown to not only improve function, but to stimulate neural growth. In our work teaching yoga for Parkinson’s, our students tell us that it improves mood and self confidence (And we can see it!). Just having fun is therapy! Treatment can also include support groups and psychotherapy, enjoyable activities—anything that improves your quality of life.
A combination of treatments tailored to the individual PWP, taking into account the person’s life situation and key relationships, provides a better quality of life for everyone, both individually and as a couple. Improvement in one aspect of your life starts a positive feedback loop, and each person’s life becomes more satisfying!
Carolyn Allen Zeiger, Ph.D. has over 40 years experience in the fields of clinical, organizational and health psychology. With Kate Kelsall’s husband, Tom, she founded a Parkinson’s care partners’ support group in Denver, and assists her husband Paul in teaching yoga to others with Parkinson’s Disease and their partners. Carolyn is a licensed psychologist in the state of Colorado, and is currently an adjunct faculty member at University of Denver. She provides short term counseling for the caregivers of those with Parkinson’s Disease.