Coping with Parkinson’s Disease: Finding Joy Amidst the Roller Coaster of Emotions

I just finished another “Hero’s Journey” with the help of Pixar’s “Inside Out” as a guide. I thought it would be good to summarize some of my writing and what I learned from the last 16 weeks of exploration of my emotions.

I think the first day I felt fear about having Parkinson’s(PD) was also the same day I first felt sadness about the PD. It was a party of emotions that day. Sadness made me cry and grieve for yet another illness to add to my list with Fibromyalgia, Sjogren’s Syndrome and Celiac Disease. Anger made me think, “NO! I don’t want another label. Fear made me realize that a lot of recent behaviors I had were related to the PD and it scared me! I had no filters. I felt lost and out of control not knowing how quick I’d change or deteriorate. 

Fear opened the door to panic. I thought of my kids and how frustrated and hopeless I already felt about them needing help to launch. But now I believed, because of my fear, anxiety and panic, that I could no longer be their launch pad or vehicle. My booster power, the dopamine in my brain, was already severely drained. I was no longer able to guide them. I became too easily irritated, confused and overwhelmed. There are days when it feels like I am only an observer watching my mental control, ability to speak sensibly, and my general health slip away. This crisis of my body and mind changing due to PD is stealthy, treacherous and can be swift.  

So what’s the resolution here? There isn’t one really. Trying to manage my difficult emotions has been a long and constant quest since having PD. One thing I have learned is that a better way to manage out of control emotions is to acknowledge them and let them have their say, then let them be. This takes their power over me away from them.

My dear, departed dog, Daisy, always helped me feel better. No advice given, no questions asked. She’d just be with me. She brought joy into my life. When sadness would overcome me, Daisy was there with joy, waiting to re-introduce us. I’m learning that my joy and sadness need to co-exist with each other and they just need to be with me. I need to be with them as well. I need to just “BE”. And now I have Tena. A sweet, mellow rescue pup who’s sole desire is to sit on my lap. This is why I feel that Daisy sent her to me. When you have a dog in your lap, loving you, it’s pretty easy to be in the moment and just “BE”.

Embracing Uncertainty: Navigating Parkinson’s and Emotional Crossroads

Since Pixar has released their newest animated feature, “Inside Out 2”, I thought it was the right time to start releasing the writing work I did recently through the Day One Cinema Therapy program. (yesandexcersize.org) “Inside Out”, the first film, was the film that guided us through 16 weeks of writing from January – May, 2024. There are eight chapters to this story, here is part one.

I find myself taking another Hero’s Journey, so soon after the first, where I explored what it was about Parkinson’s (PD) that made me feel imprisoned. I am trying to discern my choices for moving forward.  There are multiple paths worthy of exploration. Which path is the true quest and what makes it “true”? My singular duty to make this choice is a “Let’s Make a Deal” moment. Will I take the sure thing – $100 dollars?  Or will I take what’s behind curtain #3 – the unknown? The answer has to be curtain #3! My life’s path is never a sure thing. It’s already taken so many remarkable turns. Some good, some bad. There are no wrong paths. Only new paths we didn’t know we were meant to walk.

Having to make decisions has become very difficult for me because of my Parkinson’s (PD). When I am faced with making choices, whether it’s vital to my existence, or something simple like whether I want coffee or tea, I grapple with making choices to the point of shutting down in frustration and great disappointment in myself and anger at PD. Stupid PD, you are so pathetic!

So, what was it I needed to decide on? Oh right, I want to find a succinct definition of how PD affects me so people in my life can understand what it’s like to live with it daily. I’m also thinking a lot about how my 17 year old dog Daisy’s death has affected me and plays a part in any path I choose to move ahead. Every day I question and hope that I was enough for her. I hope that she could feel her own unconditional love for me reflected back to her. There was barely a negative emotion in her life. If there was, it was fleeting and had no place in her life. 

I think one of the keys to this exploration is to face all the emotions that frequent my life. I feel like I need to really understand them so I can manage them. The same way I feared, then confronted my apathy. “Apathetic Annie” never bothers me anymore. I see her in passing. Like an unwanted solicitor at my door, I acknowledge her, but I don’t let her in.

So to mythologize this second journey I will start where I left off on the first. Having defeated my apathy – “Apathetic Annie”. 

An amazing thing has happened! “Apathetic Annie” has offered to help me face the other emotions I’ve been dragging behind me. She thinks that I should recall the thoughts and feelings I had dealing with her and apply those to dealing with my other emotions. I dread facing them because they drag me back to a time in my life I most felt alone and abandoned since being diagnosed. That was when I started delivering the news to family and friends that I have PD. The reception of my news was mostly thoughtful and kind, but even the most loving and supportive response still made me feel like I was put into a small isolation room.

But now I’ll step out of that isolation and try to understand the difficult emotions I have carried with me for so long. I hope it will be my “true” path.  “Apathetic Annie” steps in and rounds up the contentious crew of troublesome emotions. I no longer have my van, so they all pile into the back of my little EV, filling it up like a crowded clown car. Buckle up! This is going to be, ahem, interesting.

Unveiling the Chaos: Rediscovering Order Amidst Parkinson’s

I arrive home, parking my car in the driveway. I say to my passengers, my emotions, “Everybody out. We’re home”. Yes, I am bringing them back home. I’ll be able to work on my relationship with each of them better if they are in my immediate presence. This is a very daunting plan for someone who has increased anxiety and gets overwhelmed easily.

“Apathetic Annie” steps out of the car and stands next to me. We are both looking at this unbelievable, huge ball of squished emotions that rolled out of the backseat and is now sitting in front of us in the driveway. It’s a behemoth! They are all mixed up and intertwined with each other. “How am I going to sort them out?”, I exclaim with panic. “Apathetic Annie” says “How about we do an emotional inventory first? Let’s pull them out of this ball one at a time and name them.”

“Okay, Annie. Thanks.” We reach in and start pulling them out one at a time. After Roll Call, we have “Doubtful Dennis”, “Worrisome Wanda”, “I’m too tired Tucker”, “Indecisive Izzy”, “Grieving Gertrude”, “Lonely Louise”, and “Sad Sammy”. Then curled up in the nucleus of this heap was someone new, “By-the-book Benny”. 

We ushered them all into the house. I look at them all sitting in front of me, not knowing where to start. “What am I supposed to do here?” Feeling overwhelmed, I collapse on the couch and start crying. I am desperate for all this confusion and my responsibilities to be gone. I feel like I am breaking into pieces. I am a shattered stained glass window. I don’t know where they came from but there are lots of mixed up colored shards and slivers of glass all over the floor. I looked at them and realized that each color and shape and size of the broken glass is a different aspect of who I am. Then my emotions start picking up the pieces. It is interesting to see each of them gravitate toward certain colors. Most of them wanted blue, because it reflects Doubt, Worry, Grief, Sadness and Loneliness so well. “I’m too tired Tucker” wanted green because it was so soothing. “Indecisive Izzy” couldn’t decide what they should have so they took some of each color. (Blue, green, red, yellow, white, etc.) “By-the-book Benny” just watched this play out before him and took notes. I’m not sure what they are going to ultimately do with the glass, but for now they’ve each picked out some kind of container to keep it in.

I’m still sitting on the couch with a tear-stained face and am trying to figure out what these emotions have to do with my constantly feeling overwhelmed. Then it dawns on me that Benny has surfaced through all these other emotions to bring back some core memories from my early career as a stage manager. I loved being a stage manager. I was damn good at it! Being a stage manager was everything to me. So much that the stage manager skills and tasks I performed over the years became a way of running all aspects of my life. As a stage manager, I created a “call book” for every show. It’s the stage manager’s bible. It contains all the notes, directions and cues needed to run the show. Without it chaos reigns. It’s critical to every aspect of the production. 

Thinking about it now, I am struck with the realization that I have been creating multiple call books for all the aspects of my life. Having a call book to follow through my everyday life gave me peace of mind. I was organized and knew what to expect. I also knew how to deal with the unexpected because contingency planning is an integral part of every call book.

But something happened that caused me to lose the ability to create and follow my life call books. Parkinson’s (PD) happened. It stripped the veneer I had built up to manage my personal life. It’s also called “having no filters”. No protective barriers. No controls. That is why I am anxious and get overwhelmed so easily. No filters to protect my nervous system. I feel like a raw, exposed bundle of nerves most of the time. Regardless of taking medication to treat my PD symptoms, medications do not fully work to quiet the internal tremble I have. Medications do not restore the confidence and organizational skills I once had and so desperately need to run the business of my life.

So what’s the resolution here? There isn’t one really. Remembering how good I was at my job and managing everyday life before PD is just an irritant and only serves to injure my ego. But maybe some memory, stored inside a vaulted section of my brain will still surface to bring me closer to facing this new nemesis, constantly feeling overwhelmed.

Emotional Respite: Finding Serenity and Guidance in the Cave from Daisy

I’m nearing the entrance of that damned cave again. I’m bracing myself, expecting that I’ll be met inside by my wayward emotions:  Worrisome Wanda, Doubtful Dennis, Indecisive Izzy, I’m Too Tired Tucker, Grieving Gertrude, Sad Sammy, and Lonely Louise. I really do not want to deal with them right now. Anxiety and Being Overwhelmed sitting on my brain is plenty of emotion to try to handle.

I stop at the proscenium and peer into the cave. It’s quiet. I walk in and am presently drawn to following a circle of light reflected on the ceiling.  I walk around looking for the source of the light. The ground is soft and dry, like a layer of fine sand. I hear a break in the silence. A dripping sound. I follow the sound and also find the source of light. There is a hole in the ceiling of the cave. The quality of the light is soft white and gray. It gently shines down on a small, shallow pool of water, about 8-10’ diameter, directly underneath the hole. It’s a reflection from this pool  that I saw when I entered. There is a single, very large stalactite hanging over one end of the pool. It is slowly dripping water into the pool. Drip……drip……drip. This is the only sound in the cave. I notice that some of the beams of light have sparkles in them. They are floating joyfully, down, sideways, twirling, up and down again. I watch a cluster of these sparkles dance their way down to the opposite side of the water pool. Sitting in the beam of light and sparkles, next to the pool, is Daisy, my dear departed dog. She looks so happy and peaceful. I can’t believe what I am seeing! I cry and rush to her. Falling to my knees I wrap my arms around her for some big warm and fluffy hugs.

After a solid minute of hugging, I pull my arms back and set them in my lap as I sit kneeling in front of Daisy. I wipe away my tears and take a deep breath to calm my excitement at seeing her. I ask, “Daisy, how did you get here? Why are you here?” Daisy puts her front right paw on my knee, then tips her head down to indicate she wants me to tip my head down also so we can touch foreheads. As we always did whenever I left the house, when we said goodnight, and it was the last thing we did as she passed. She also made low rumbling noises. Like a mother dog to her pup.  I call them cuddle noises. I put my forehead to hers and listened to her gentle cuddle noises. 

In the rapture of this moment, I felt Daisy’s thoughts, straight from her heart. She let me know that she was no longer in pain and that she was very peaceful and happy. She also told me that she was there because she had been keeping an eye on me since she died. She wanted to make sure I would be okay. She saw that I was lonely, sad, grieving, anxious and overwhelmed.

She told me that she would be sending another dog to take away my loneliness. She also relayed that this other dog would really need me because she has had a hard life. That I would rescue the new dog, and she would rescue me back. So Daisy wanted me to know that all I really needed to do to stop feeling so anxious and overwhelmed is to listen and watch and be there for the new dog. She would need me to sit with her. A lot! “So I’m supposed to sit and pet the warm dog in my lap and let all the anxiety and doom in my mind just slough off of me?” I asked. “Yes”, Daisy tells me. “That’s it. Just Let go. “What about my other emotions?” I wondered. Daisy tells me, “They will find their place just like Apathetic Annie.” 

I shake my head side to side and smile in astonishment at this wisdom. I am so happy to have this time with Daisy! I reach out to pet Daisy from the top of her head and down her back, then I give her a little scratch under her chin as I always used to do. She briefly tilts her head back in delight and smiles at me. Then she places her paw on my leg and invites me to touch foreheads again. Daisy tells me, “I must leave you now”.  In that moment my tears flowed again, but softer. Daisy continues, “But my love for you will always be with you and I know how much you love me.” She starts fading away, turning into the very same sparkles of light that brought her to visit me. As she departs, she tells me, “You’ll recognize the new dog by the collar she’ll be wearing. It will have daisies on it.”  I let out a big sigh and stopped crying. I stand up and look around me. The light entering the cave is not as bright, but still glows gently. I hear the slow drips of water again. I take one last look at where Daisy sat then turn around and find my way back to the cave entrance. 

This was not what I expected at all when I entered this cave. Not one of my pesky gang of emotions in sight! Where are they? What are they up to? No matter, I feel like I’ve been given a respite. I’ve been washed with calmness and serenity for the time being. Thank you, Daisy.