Gerald has plenty of reasons to be pleased with his life. He had a career as a successful business owner, and now he enjoys a comfortable retirement with his wife, Mary. He has four grandchildren with whom he spends as much time as possible. And yet Gerald wears a constant expression that others might interpret as stern, if not gloomy.
Gerald’s wife and their friends are surprised when they see the lack of expression on his face. Gerald insists that he is generally happy and enjoys things, yet his face doesn’t show much expression.
What’s going on with Gerald? It turns out that Gerald was recently diagnosed with Parkinson’s disease. The disorder, which he has most likely had for many years prior to his diagnosis, has not robbed him of his capacity for happiness, but it has largely erased his ability to look happy.
The primary effects of Parkinson’s — rigidity, slowness of movement, muscle tremors and imbalance — can greatly disrupt a patient’s life. But for Gerald and some other Parkinson’s patients, the neurological disorder’s secondary symptoms — the blank face and flattened voice — add to the burden, creating misunderstandings and straining relationships.
The emotionless bearing of Parkinson’s patients such as Gerald is medically described as hypomimea, which is also known among health professionals and caregivers as “the mask.” Prior to his death, the symptom clearly afflicted one of the world’s most famous Parkinson’s patients, Muhammad Ali. Known during his boxing prime as much for his facial and verbal antics as for his punches, Ali had been rendered stone-faced by the time of his appearance at the opening ceremonies of the Atlanta Olympics in 1996.
Hypomimea in Parkinson’s
The effects of Parkinson’s are highly variable, but the American Parkinson Disease Association says most patients experience some loss of facial control and vocal inflection. According to research, socially, lack of facial expression presents many problems because people often incorrectly assume that a patient is always sad. Most people respond to others with not only their voice, but with their face and their eyes.
Here are some things you should know if you have a loved one who has hypomimia, or “the mask”:
- It can be treated: Parkinson’s is one of few neuro-degenerative conditions that can be treated. Medication can help with facial freezing, just as it can with the disorder’s primary symptoms.
- It doesn’t affect all Parkinson’s patients: There are some patients who are more prone to facial involvement with Parkinson’s disease than others.
- The patient likely doesn’t know they have it: Very often the care partner and physician see it and the patient does not. Doctors will typically see it and mention it to a patient, and the patient will be surprised about his lack of expression.
- It could be depression: Depression does in fact afflict half of Parkinson’s patients, making it difficult to tell whether an unsmiling face reflects a physical effect or an emotional state.
As you can see, Parkinson’s often creates a divide between emotions and outward appearance. Others may perceive a person with Parkinson’s as grumpy, when they are anything but. People with Parkinson’s who are aware of their symptomatic facial expressions can sometimes compensate by being more verbal but, sadly, Parkinson’s can also reduce the capacity for voice inflection. Patients with Parkinson’s often mumble monotonously, and don’t show emotion with their voice either.
The father of Renee, one of our team members here at the Farr Law Firm, has had Parkinson’s for 20+ years, and he recently almost died from a serious bout of pneumonia. He pulled though, as he has several other times. He doesn’t smile much, can’t walk, can hardly swallow, and mumbles incomprehensively, but his attitude and positive outlook keep him going. Here are some tips from him and others similar to him for staying positive with Parkinson’s, even if you look like you are frowning!
- Keep your sense of humor! Having trouble walking, being unable to talk as clearly as you would like, or giving up driving are not particularly funny. However, try to put a humorous spin on everyday observations and situations. For example, if you use a wheelchair, you might look at it this way: You always have a place to sit and a pair of shoes lasts much longer. Remember, laughter is a great stress reducer.
- Surround yourself with caring, loving, and nurturing family members, friends, and neighbors. Spend time with your children and grandchildren. Even if you don’t smile, or can’t be as animated around them, your energy and personality will still radiate in more subtle ways, and they will still know you love and care about them!
- Try to keep a positive attitude. Your symptoms may be changing and the effectiveness of medications may not be what they used to be. But, try and look for the silver lining. It’s perfectly natural to mourn the loss of function and independence for a brief time, but try not to get stuck there, wallow in self-pity, or isolate yourself from friends.
- Treat depression if you have it: If you experience any combination of symptoms such as loss of appetite, feelings of sadness, difficulty sleeping, loss of your sense of humor, a sense of hopelessness, or just feel down in the dumps — you may be suffering from clinical depression. Please tell your doctor! Even though you have every right to be depressed about your illness, depression is a treatable condition. A combination of antidepressants and/or psychotherapy can help lift your spirits and give you renewed energy to keep that all-important positive attitude.
· Plan to do activities around those times when your medication gives you the most benefit. Mornings are often a better time of day to exercise because you are not as fatigued as in the afternoon. Although you may get fatigued during the day, be careful not to nap too much; otherwise, sleeping at night may be difficult. Taking a short nap after lunch can be revitalizing, but try to limit your daytime sleep so that your nighttime sleep can be more restful.
· Consider attending a local PD support group, no matter what your age or stage. Support group members understand your struggles because they face or have faced the same challenges.
· Be willing to change the way you do things. Remain flexible. Compromise. Accept the help that is offered and accept that more than one way exists to wash the dishes, put on clothes, or get from here to there. Practice patience — with yourself and others.
Remember, even if you have Parkinson’s, encounter setbacks and obstacles, and can no longer smile on the outside, life can be pretty amazing if you choose to adapt to it. Hopefully, the suggestions above will inspire you to stay positive and do what you can to make your life the best it can be!
Do you or a Loved One Suffer from Parkinson’s or Another Debilitating Disease?
If you or a loved one is nearing the need for long-term care or already receiving long-term care or if you have not done Long-Term Care Planning, Estate Planning or Incapacity Planning (or had your Planning documents reviewed in the past several years), please call us at one of the numbers below to make an appointment for an initial consultation, or sign up for one of our upcoming seminars:
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