Sadness and Depression

An estimated 40 percent or more of Parkinson’s Disease patients eventually suffer from depression.^1,2 Their doctors religiously probe for this with questions such as, “Do you ever feel depressed?”

“Dumbass,” you think. “Oh, occasionally, Doctor,” you reply. “Doesn’t everyone get depressed?” you ask.

“How about thoughts of suicide?” The doctor inquires.

“Never,” you lie.

In early-stage PD, after the initial kerplunk of diagnosis, life is manageable. You are self-sufficient and able to function in society. However, a few years later, when you have entered Stage Three of the five stages,³ life is not easy. You may feel entitled to depression. Your voice is soft, and people ask you to speak up, or, worse yet, they ignore you. Your walk is unsteady, and you fall. Support is required:  a cane, a walker and, eventually, a wheelchair. Your fingers don’t work well either. Shirt buttons become the enemy. Pullover shirts and clothes with zippers take over your closet. You no longer wear ties, or if you must, you buy a clip-on. Food loses its appeal, for you have little sense of smell. Eating can be dangerous, and you must take care in swallowing, as choking is a risk. ^{4, 5} When you pass a mirror, you do not recognize yourself. Staring back is a thinner, hunched-over shell of your former self. Sleep is problematical and not often restorative. You feel fatigued. In the middle of the night, your legs become prickly, or the calves cramp so tightly that you find yourself pushing a walker around your living room trying to work out the knots. If you are lucky, you do not hallucinate or have bad dreams. Where is there joy in this?

Are you clinically depressed and in need of medical help? Alternatively, are you feeling sorry for yourself? I think it is important to sort this out.

In earlier posts, I have addressed how the Parkinson patient can work around some of the inevitable problems of PD. I refer to previous posts:  Walking, Talking, Eating, and Sleeping. Each of these seemingly normal human functions of daily life becomes a hurdle that requires the Parkinsonian to think first and then take intentional action. Failure to think before trying to move or eat can lead to falling or choking, both causes of death of Parkinson patients.

Sadness and Depression

Everyone feels sad sometimes and for many good reasons—so good that if you do not feel sad, people will wonder.⁶ Our coping mechanisms for sadness are crucial. I have found I am better off grieving and sharing my loss sooner rather than later.  Writing this blog is an example of sharing my sadness about having Parkinson’s Disease with others who have the disease or have loved ones who suffer from it. Forcing myself to read, study, discuss, and write about my disease has often led to solutions and happiness!

Sadness can go on for days, perhaps even weeks. Some days, you feel crummy, and the weather matches. Give yourself a sadness pass. You may go so far as to say, “Okay, today I will be sad for six hours, and that’s that.”

However, if the grey feeling persists and you experience listlessness, apathy, excessive sleeping (or insomnia), overeating (or decreased appetite), and a lack of desire to move away from despair and sadness, then it might be depression, a much more serious condition requiring a doctor’s visit.⁷ Your doctor should ask about your medications—all of them, even supplements—for drug interactions can cause mood change. The first stop should be your family doctor followed by your Parkinson’s doctor. In the last 15 years, I have survived frightening drug interactions and incorrect dosages, including too much of a drug that resulted in fainting. If your depressed state is unusual, or you have changed your medicine, talk with your doctor as soon as possible and provide him or her with a complete list of your medications, when you started taking them, who prescribed them, the dosage and time of day you take them, and if you take them with or without food. Your “depression” may result from your medicine.

Measuring Sadness

I am a measurement fanatic and seek ways to quantify. In an earlier post on sleep, I mentioned that I was experimenting with an iPhone app to measure various aspects of sleep. I was expecting to obtain data on how I slept, but I also received a history of how I felt.  In the morning, the app wakes you with a gentle alarm and, before you rise, asks you to perform two tasks. First, it presents you with a screen containing three smiley faces and asks you to select the one that best represents how you feel: happy, neutral, or sad? Second, it instructs you to place your index finger over the camera and takes your heart rate.

Figure 1

Then the app provides you with extensive statistics on your sleep patterns by day, week, month, and since you started using the program. It also counts your steps by day and knows how well you slept in various locations, along with the weather conditions, barometric pressure, and the phase of the moon. When I started collecting the data, I did not give much thought to the smiley faces except to answer how I felt at that moment: happy, nothing, or sad. Then the data revealed their treasures as reasonably objective measures of my moods. Of course, this information is subjective, and when I became aware that I might publish this information, I had to face the risk that my intentions biased future data. I was both the data creator and observer, and I could provide distorted answers that reflected my bias about my state. This data problem is well known as the “observer effect” or the “Hawthorne Effect.” ⁸ To add a touch of objectivity to this experiment, I sent the data file to a friend to analyze.⁹ I was interested in three things. First, what was the cumulative result of the smileys if you assigned “+1” to happy, “0” to neutral, and “-1” to sad. The idea is that an upward curve would suggest more happy than neutral or sad days, and a downward curve would reveal a prolonged period of sadness, bordering on depression. Figure 2 displays the cumulative curve. The occasional dips or flat areas indicate sad or neutral days.

Figure 2

Next, my friend plotted each of the three smileys on a separate cumulative curve. This result is in Figure 3, along with a table of the various outcomes. The total sample consisted of 463 nights/days; 54% of the time I selected a happy face, 40% of the time neutral, and 6% of the time I chose a sad face. This self-assessment occurred first thing in the morning, while I was still in bed, before PD meds or coffee!  I was surprised.

Figure 3

Finally, I wanted to know if I had prolonged periods of sadness, where day after day I could not pull out of it. As you will see below in Figures 4, 5, and 6, the answer is decidedly no. I had a few cases of several days in a row of happiness and neutrality, but interestingly, except for one four-day period of sadness, I managed to follow most sad days by a happy or neutral day. On average, I experienced about as many “happy” days as I did “neutral” and “sad” days. My glass was indeed half full!

Figure 4

Figure 5

Figure 6

For this “smiley” analysis to be legitimate, you must believe that the Hawthorne Effect was not in play or that it may not matter. During the study period, I focused on collecting sleep data and tried to indicate on the smiley page how I felt about each new day. If I were to attempt a similar study today, I would not be able to avoid the fact that I was both the creator and observer of the data and my answers would be affected by this knowledge.

Remedies

Since depression is such a significant risk as Parkinson’s Disease advances, it is worth considering ways to prevent it or modify the severity. A standard answer is antidepressants. These medications have saved many lives, but I suggest a few steps before that.

I believe the first line of defense is to read as much about Parkinson’s Disease as you can. When you know what you are facing, you can adjust your expectations about your life. The path the disease takes varies from person to person, but the declining ability to walk, talk, eat, and sleep eventually impacts everyone and everything you wish to do. For me, and many PD patients I have spoken with, it is the change in expectations about how you will live the rest of your life that is initially overwhelming and depressing.

An important preventive measure to minimize sadness and depression is to stay socially engaged. This feat is not as easy as it sounds. Misconceptions about the disease often lead to discrimination, and “friends” seem to disappear. If continuing to work is not an option, then volunteer to help organizations for which you could add value. Another great way to stay socially engaged is to attend the many classes offered at hospitals that have departments specializing in Parkinson’s and other movement disorders. You will find classes in dancing, meditation, yoga, and tai chi, as well as seminars and webinars offering updates on research. In addition to hospitals, the Parkinson’s foundations are great resources for information on research for medicine will that slow down or even reverse the progression of the disease.  They also command a wealth of information to help make your daily life more comfortable.

A growing amount of evidence points to exercise as a therapy that may slow disease progression as well as help alleviate depression.^10,11 Exercise for the sole purpose of exercise has never interested me. However, walking is a way of life in New York City and, when healthy, I walked everywhere. My favorite vacation was to go hiking, especially in the White Mountains of New Hampshire. Now I face the dilemma that I must exercise, as it may retard the Parkinson decline, and I meet regularly with a physical therapist, a yoga instructor, and a massage therapist.

Parkinson’s patients are finding exercise in dancing, tai chi, yoga, boxing, stationary bicycles, treadmills, and rowing machines, among others. Stationary bikes and rowing machines have the significant advantage that you are unlikely to fall and can use them even in later stages of Parkinson’s.^12,13Conclusion

Depression and sadness are as integral to PD as trembling hands and shaking legs. You must understand the difference between these two conditions to determine your response. Both are justified. Life as a Parkinson’s patient is tough going. Sort out what is going on with yourself. If necessary, get help. Whatever you do, exercise, engage with friends and keep your mind active.

Footnotes

1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2040268/
2. http://n.neurology.org/content/69/4/E2
3. https://parkinsonsnewstoday.com/2017/08/23/five-stages-of-parkinsons-disease/
4. https://www.atsjournals.org/doi/full/10.1164/ajrccm.158.2.9705094/
5. https://www.michaeljfox.org/foundation/news-detail.php?swallowing-and-parkinson-disease/
6. Sadness: https://en.wikipedia.org/wiki/Sadness

Sadness is an emotional pain associated with, or characterized by, feelings of disadvantage, loss, despair, grief, helplessness, disappointment and sorrow. An individual experiencing sadness may become quiet or lethargic, and withdraw themselves from others. An example of severe sadness is depression, a mood which can be brought on by major depressive disorder or persistent depressive disorder. Crying can be an indication of sadness.

7. Depression: https://en.wikipedia.org/wiki/Depression_(mood)

Depression is a state of low mood and aversion to activity that can affect a person’s thoughts, behavior, tendencies, feelings, and sense of well-being. A depressed mood is a normal temporary reaction to life events such as loss of a loved one. It is also a symptom of some physical diseases and a side effect of some drugs and medical treatments. Depressed mood is also a symptom of some mood disorders such as major depressive disorder or dysthymia.

8. https://en.wikipedia.org/wiki/Hawthorne_effect

The Hawthorne effect (also referred to as the observer effect) is a type of reactivity in which individuals modify an aspect of their behavior in response to their awareness of being observed. The original research at the Hawthorne Works in Cicero, Illinois, on lighting changes and work structure changes such as working hours and break times was originally interpreted by Elton Mayo and others to mean that paying attention to overall worker needs would improve productivity. Later interpretations such as that done by Landsberger suggested that the novelty of being research subjects and the increased attention from such could lead to temporary increases in workers’ productivity. This interpretation was dubbed “the Hawthorne effect”.

9. Morrison & Associates
10. https://jamanetwork.com/journals/jamaneurology/article-abstract/1389387/
11. http://news.feinberg.northwestern.edu/2014/11/Simuni-exercise-Parkinsons/
12. https://www.theracycle.com/theracycles/
13. https://www.concept2.com/