Coping with Mental Health and Parkinson's Disease

It was a Tuesday morning mid-winter and the snow was already falling. The forecast told for a blizzard and already the hospital discharges for the day were being delayed by family and friends being unable to come and pick up their loved ones. Judy* slept overnight by her husband, John’s side on an uncomfortable but durable cot. During our brief check-in, John and she lamented over the weather and their disrupted plans. John was hoping to head home that day in order to celebrate their grandson’s birthday. Usually it was the Parkinson’s disease that altered their plans, she remarked. Today, yet another factor outside of their control was intruding. Understanding the new normal The conversation swiftly moved into Judy and her husband, recently retired, discussing the larger theme of canceled plans and disrupted expectations. Both had worked both in and outside of the home for their adult lives, saving up for what they hoped would have been a carefree retirement. Free of responsibility, they had expected to spend their time traveling and nurturing respective hobbies. John remarked “I thought we had time” and went on to share how he wished he had retired earlier. Judy attempted to comfort him, sharing that they could not have known or predicted his diagnosis or how it would impact their lives. Like many couples coping with Parkinson’s disease, they were coping with the loss of future they had envisioned and learning how to radically accept and make meaning of their current reality. Coping with the diagnosis In the midst of the medical treatment of Parkinson’s, it may be useful to consider how psychological and emotional processing is affecting your overall coping. For some, the emotional adjustment to Parkinson’s can be as difficult as coping with the physical symptoms. It can include coping with one’s body changing along with the need for new personality characteristics, such as increased dependence on others. For caregivers, there can be a different adjustment. Caregiving often occurs in private. Attempting to minimize the impact of providing daily support along with the personal cost of caregiving (i.e. reduced sleep) can lead to the experience of ongoing sadness, grief, and sorrow.2 People with Parkinson’s may also experience chronic sorrow related to disrupted plans, the need to ask for help and depend more on others, as well as limited socialization and challenges related to participating in former hobbies.1 It's okay to grieve Acknowledging the emotional toll of Parkinson’s is not necessarily easy however, I’ve noticed it can sometimes bring one to a greater sense of overall acceptance (not approval!) for the experience of living with the disease. This awareness or grieving process can occur independently, through the practice of mindfulness or prayer. It can also occur in the shared setting such as with other family members or in a Parkinson’s Disease support group. Some patients and caregivers choose to reach out to a mental health professional for support and processing especially if symptoms of depression or anxiety arise. Regardless of how one chooses to cope, it can be useful to remember you are not alone and this is a part of the process of coping with Parkinson’s disease. What areas have you had to grieve since experiencing Parkinson’s either as a patient or a caregiver? How has living with Parkinson’s affected you emotionally? What has helped? *Names and identifying information changed to protect privacy. Engage with the community by asking a question, telling your story, or participating in a forum. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] It’s a tragedy that just doesn’t get addressed nearly as much as it should. I am talking about the tragic hint of thought to harm oneself or worse. I am not a mental health expert nor am I a doctor of any kind. As a long time and active blogger on Parkinson’s disease, sadly, I am occasionally approached by people with Parkinson’s who see no way out. Appearances can be deceiving The tragic death of designer Kate Spade is just one of the many shocking deaths that prove that appearances of having and achieving that perfect dream and care-free life is nonexistent. Depression can attack us all. Keeping up appearances and projecting the image that all is fine and good is a popular reaction to living with an illness. Denying that there is a problem, is just that, a problem. Maintaining a life of denial and cloaking one’s feelings hinders our ability to recognize that a problem is looming. No embarrassment in seeking help There is no embarrassment in seeking help when we need it. Recognizing our need for help or for outside advice is nothing to be embarrassed about. Adding a mental health practitioner to your care team may be just what you need to put you back on track. Secrecy is a difficult roadblock to knowing about someone’s life and mindset. Unless we are alerted or let in, only then can we refer those who are struggling, to experts in mental health and neurology. Regretfully, some people are just too skilled at keeping secrets. Communication is crucial. Identifying new approaches There are times in our lives where we must regroup and take another approach. If your approach isn’t working for you, you may want to look at the issue with fresh eyes. Be patient and willing to try a new approach to the same issue. Don’t give up. Be creative and seek options. If one approach doesn’t work that doesn’t mean that you have to abandon other new potential opportunities. There are choices for all of us — it just takes identifying those options. If you have suicidal thoughts or feelings tell your physician, your neurologist, and seek out professional expert mental health in your area. Unleash your feelings to those close to you for the help that you need. If you need it, the National Suicide Prevention Lifeline is available at 1-800-273-8255 and www.suicidepreventionlifeline.org. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"],My wife and I were traveling to Virginia for Labor Day weekend. With her at the wheel, she was able to navigate the rain, traffic, sounds, and lights so I could count down the miles while listening to Pitbull repeatedly scream, "MR. WORLDWIDE!" Besides, that combination of mental effects and anxiety is way too much for my Parkinson's disease (PD) state of being. On Route 81, which runs parallel to the Shenandoah Mountains, rush hour on Fridays can get dicey. For the most part, we knew it was going to be a long drive in the dark. Hence, my wife chose to battle the road to keep me out of overload status. Parkinson's and hunger We started out late, so I was hungry, and I know, like the Snickers commercial implies, I'm an angry bear when I'm hungry. In order to avoid that opportunity for an emotional overload, we stopped to eat as soon as we could. My Parkinson's disease mind seems to feel every single bit of my depleting food reserves. It isn't pretty. If we're out with other people and they can't make a decision, I'll make it for them or encourage momentum. If this means not doing a group outing, so be it. That said, if we can start the debate earlier, all the better. Things just need to be solved before they're unraveled. In my PD past, the mix of lights, motion, and hunger hit me really bad when I returned from Iceland last year. It was at this point that I instituted the "it's not you; it's my PD" apology. It generally works, but it's still loathed since it means a part of "Dan" that is no more. Grrr. Knowing my triggers There are other things that let me know I'm in danger of a sensory overload. I can feel it when my brain is getting woozy. Sure, I can hit Tylenol, but I know I just need to zone out and forget about it until the meds kick in. Additionally, the wrong kind of music during this time, anything thumping, has to go. Cue the mellow or mellower music! Avoiding angry news is also essential, but now, this means being uninformed about everything. Thus, balance is everything. Learning to let go of control I've never been a good passenger, but I'm working on it. I am preparing for the day I give up the keys by learning how to be a passenger. However, on that drive when my wife was faced with road construction, a terrible driver swerved in front of her at the last minute. She had to slam on the brakes and my mind went into overload screaming for her to stop. Granted, she had control of the vehicle, but this other driver appeared, and I thought we were going to slam into him. We didn't, but as we slid closer to him I felt like screaming and vomiting and coming out of my flesh as my wife felt I was criticizing her driving. With no control of the moment and so many things going on, I had absolutely no control of my future, and it was scary, draining, and explosive all at the same time. Even thinking about it now, a part of me is crawling into the emotions of that moment. This is why I explain and apologize ahead of time while I'm still in control. It's not Dan, it's PD. Managing my emotions About a decade ago, I remember working with a little boy (about 6) who was diagnosed with PDD-NOS (an older autism diagnosis - pervasive developmental disorder not otherwise specified). In looking at my explosive feelings of emotion in those moments, I realized what he was going through. It seemed that when he got the emotion out, he was able to be himself again. Because he was young, he only knew one way to get out the pain: scream, cry, refuse. Thinking back to his pain puts perspective on my own physical and mental dealings. Here, I can't take it out on others, though I have. Instead, I need to walk away and chill out or avoid these places altogether. If I'm heading there, I need to give warnings and remove the instigators if possible. Robot voices on a GPS, self-checkout lines, or a phone tree are horrific to me. Really. I'll wait in line before I self-checkout. Besides, the grocery store isn't paying me to work there. Frustration and anger My first memory of having an overload was in Cancun. I couldn't snorkel, and I couldn't get the sea scooter to carry me over the waves, much less utilize the fins. There I was, grumbling at how this beach adventure wasn't going my way. The previous day, I couldn't do the BOB scooters either. That second day my head was thumping, and since I didn't know the local language (my fault), I was finding myself more and more frustrated with the underwater pressure. Would I lose my chance to do this fun adventure or even be alone to surface from the trap I was in? On this second day, I was freaking out double for both days. I felt the anger and anxiety as I wanted to hurl the contraption. Then I realized I was acting like a spoiled brat. I calmed down, apologized to the woman who ran the tour, and let my wife go by herself on the underwater museum tour the next day. Be open about your anxiety Now, I know scuba and snorkeling aren't for Parkinson's me. Sadly, a fair bit of my May 2016 Cancun memories are me dealing with my diagnosis of Parkinson's, which was coming quickly with this symptom and more. That said, there are a lot of good memories, but the memories at sea and in the rickety buses, not so much. PD anxiety is horrible. Apologize sincerely, often, and upfront. Find your happy place. Tell people about these moments before they happen. Avoid stress if possible. Enjoy life. Become bilingual. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Parkinson’s disease (PD) is a thief. I did not understand this when I was younger. Now, after losing two loved ones to PD, I do. Shortly after my vibrant, sociable grandmother moved to an assisted living facility, she stopped leaving her house. The first time I visited her at her new home we walked across the parking lot to the local Braum’s – one of her favorite restaurants – to get ice cream. The next time I visited she refused to do the same. Instead, we had bowls of ice cream in her room and watched Elmer Gantry. Later, I asked my mother about my grandmother's behavior. With a short chuckle, she said, “That’s just your gran. Probably didn’t want to be seen with her walker. Doesn’t want anyone to think she’s a burden.” Losing sight of self-worth And that’s exactly what it was. Once my grandmother’s illness became visible, she didn’t know how to cope. To her, she’d become a burden and an outcast. This is a thief of a different kind, and it deserves just as much attention as the theft of movement, independence, and bodily control. Another loved one lived with Parkinson’s disease for many years, moving first from living at home to living in an independent living facility to finally living at an assisted living facility. When the time came that she needed even more help, she opted to pay for a dedicated nurse rather than moving (again) to a nursing home. As her level of care needs rose, we watched as her spirits sunk. And, in those final months, when she was alone in her room at night, she started falling. She fell, time and again. Always in her room. Always when no one was there. And after a few instances, it became clear to those of us who loved her that she was doing it on purpose. Ultimately, it was those falls that led to her death. [native] Mental health awareness Mental health doesn’t get a lot of attention in articles about Parkinson’s disease. This is understandable given the wake of physical devastation left in the disease’s path, but it does matter. And it’s something we need to talk about and address. Depression is often comorbid with chronic illnesses. In some cases, depression may have come first. In many cases, however, the depression comes about as a result of the stresses of living with chronic illness. According to the National Institute of Mental Health, the changes in the brain caused by Parkinson’s disease may play a direct role in depression. Signs of depression Depression can affect people in different ways, but the most common symptoms include: A negative view of self Fatigue Problems with sleep A negative view of the personal world Loss of interest in activities and hobbies A negative view of the future Problems with appetite Think you or a loved one is at risk or experiencing symptoms? These Mental Health Screening Tools may be useful. Getting help There are many mental health resources and treatments for the chronically ill. Cognitive behavioral therapy is an effective treatment for depression that can help people with chronic illnesses address and rectify negative viewpoints. Certain anti-depressant medications can help treat the chemical changes in the brain that lead to physical symptoms. Talk therapy also can be useful for working through the stresses and emotions associated with living with a long-term illness. For help in finding treatment in the United States, reach out to the Anxiety and Depression Association of America, call Mental Health America at 1-800-273-TALK, or review options at MentalHealth.gov. For immediate assistance with severe depression and suicidal thoughts, please call the National Suicide Prevention Lifeline at 1-800-273-8255. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],

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