Observations From a Suicide Loss Survivor With Parkinson’s

Editor’s note: This column discusses suicide. Please find resources for help at the end of the column.

November 21 is International Survivors of Suicide Loss Day. Unlike when loved ones are left behind after a death caused by an illness, old age, or tragedy, those left behind after the loss of a loved one by suicide are called “survivors.” Steve, my life partner for over 33 years, took his life on March 15, 2015. I am a suicide loss survivor.

In October 2015, I was diagnosed with Parkinson’s disease.

These circumstances have allowed me to observe similarities in diagnosis, the search for cures, disease progression, stigma associated with the two, and challenges with medications that exist with both mental illness and Parkinson’s.

Over the years, Steve was diagnosed with many mental illness labels, including  that he was manic depressive, that he had a personality disorder, that he was obsessive-compulsive with his thoughts, that he had an anxiety disorder, and so on. He ultimately was diagnosed with bipolar disorder.

About six months before Steve died, I witnessed him experiencing a panic attack. Seeing someone you love in such a state is devastating. I remember helplessly dropping to the floor while my body was wracked with sobs. Steve was in so much mental pain, and our relationship was falling apart.

I clearly remember feeling something “snap” in the back of my head. It wasn’t pain I felt, but I recalled thinking it was an ominous occurrence that would eventually impact my long-term health. I didn’t think about that moment again until I received my Parkinson’s diagnosis seven months after Steve died. More than one neurologist has told me the onset of my Parkinson’s could have been triggered by the emotional trauma I suffered before and after Steve passed.

Diagnosis, cures, progression

No blood tests or MRI scans exist to help determine a definitive diagnosis for either Parkinson’s disease or bipolar disorder. Since there is no biological marker for bipolar disorder, its diagnosis is based on a review of symptoms and potential medical explanations for those symptoms.

With Parkinson’s disease, diagnosis is based on a person’s medical history, answers to certain questions, and a physical examination. In both cases, clinical diagnosis relies on the doctor’s expertise and judgment. Since diagnosis for both of these illnesses is fairly subjective, small seeds of doubt regarding diagnosis may haunt the individual.

Over the years, I could see how Steve’s bipolar episodes were increasing, both in duration and occurrences. This disorder is a lifelong condition. Treatment focuses on managing symptoms.

Parkinson’s also is a progressive, incurable disease, and treatment consists of managing its symptoms.

Bottom line: For both afflictions, it’s like living with the sword of Damocles hanging over one’s head.

Treatment with prescription medications

When it comes to treatment medications for both bipolar and Parkinson’s, there are a lot of commonalities. They include:

• The side effects of the medications can also be what the medication is attempting to alleviate.
• New treatments appear to be other drugs that treat side effects or enhance the effect of a drug that has already been prescribed.
• Typically, in a trial-and-error exercise, doctors have patients try various medications, balancing side effects and symptom improvements. What may provide symptom relief for one person might have unacceptable side effects for another. Also, a treatment may work for one but not another.
• It can take weeks or even months to know if a medication will be effective.
• Most medications can’t be suddenly stopped. One must be weaned off the drug. The potential also exists for suffering withdrawal symptoms.

Stigma

Things may not always be as they seem in individuals with Parkinson’s or a mental illness.

For many who suffer from Parkinson’s or mental health issues, the mask of “all is well” is worn. However, the individual is struggling and can be torn apart inside. The energy it takes to maintain that mask is draining and stressful, which can further exacerbate the condition.

Parkinson’s symptoms can be misinterpreted, causing a stigma. As examples, slowness of movement or speech might be perceived as intellectual disability, imbalance as intoxication, and tremor as nervousness.

Negative stereotype attitudes and beliefs toward people with a mental health condition are fairly common, and assumptions are sometimes made that the individual could be unstable, violent, or dangerous.

Lessons learned

Witnessing Steve’s struggles over the years has given me the ability to more deeply empathize with the challenges Steve and others like him have had or are experiencing. There are many parallels with Parkinson’s and mental illness. Both conditions have imperfect treatment solutions, stigma, and uncertainty.

Also, as a suicide loss survivor and a person with Parkinson’s, I am at risk for a higher suicidal ideation rate than the general population. I must remain vigilant when I start feeling despair and hopelessness. If I start to tumble down the rabbit hole of depression, I cannot self-isolate, and I must reach out for professional help.

I am a Parkinson’s warrior and a suicide loss survivor.

“If we can share our story with someone who responds with empathy and understanding, shame can’t survive.” — Brené Brown

If you or anyone you know is experiencing suicidal thoughts or needs someone to talk to, please call the National Suicide Prevention Line at 1-800-273-8255 or visit suicidepreventionlifeline.org.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.