Time passes slower for the lonely soul. When loneliness happens, It can be just as profound in a crowded room as it is when one is truly by themselves. Most people don’t understand. For those of us battling Parkinson’s disease, the loneliness some of us feel in crowds is all too real. 
Frustration caused by movement and communication issues, struggling to make sense and stay upright is harder than it looks. While our facial expressions change, it adds to the confusion. We try to explain but the struggle to be understood just adds to the anguish many of us feel. True communication breakdown. Causing stress, loss of time, and loss of will until apathy creeps in. Then caring and the patience to keep trying to make others understand flies out the window.
Loneliness is mentally crushing and debilitating. It leaves you waiting, wondering and worried about everything. About the present and the future. Being misunderstood by family and friends is the worst form of feeling lonely. This is where healthcare professionals have to play a better role in explaining to family members about the psychosocial side of Parkinson’s. Not just leave it up to the person diagnosed to figure it out as they go along.
When they first added carbo/levo to my already full pill regime the neurologist explained I might see a fluctuation in my moods. My mom was still alive at the time and I remember talking to her about it when I felt things begin to shift. I was thrilled I found a medication that was addressing my movement disorder and speech issues. I took the bad with the good. Figuring that at some point it would balance out.
Only I was wrong. It helped many things and removing unnecessary medications improved my overall health. My quality of life deteriorated due to the sheer misunderstanding of how PD looks different for everyone. Especially for women who are also going through the perimenopause phase of life.
I’ve never really been a stranger to loneliness. Living in rural areas for most of my adult life didn’t help. Depression and anxiety were the norm for me when our family of three became a family of 4. Some of my issues with balance, facial abnormalities including drooling, and left side symptoms go back as far as my early 20’s. Speech abnormalities go back to early childhood. Causing awkward social anxiety from birth.
A week after I suffered a cracked rib during a mammogram in 2010, I was reduced from a young mother to an old woman walking with a cane overnight. It was a whole new kind of loneliness. One they called everything from fibromyalgia, possible stroke to a slight case of gamberaia. My world was forever rocked off its axis. My small family and school-aged children weren’t prepared. We did the best we could. What little independence I had disappeared. The loneliness in my head became more profound, amplified by shame and grief over the basic life skills I had to give up.
2016 found us in a different state with a different diagnosis. Young-onset Parkinson’s disease. Left up to me to figure out and explain to my family who were busy growing up and moving away. Again, I was happy I found a pill that worked. Only my family couldn't and wouldn’t accept what that one pill meant. They couldn’t get the progressing images on Michael J. Fox out of their heads. Refusing to believe that while I was losing weight and improving my health, I could have any form of Parkinson’s Disease.
As anyone who has taken this medicine for a long period of time knows. It wears on your mentality. I did what I could through research. I read about Pamila Quinn and Jimmy Choi and followed the advice of Micheal Okun while I changed my diet and tried to ‘cure’ my PD on my own. Talk about a lonely road.
Yes, and every attempt I made to include my family in my research and show how I was improving because of everything I learned. The more they pulled away.
My loneliness grew. The one local support group I tried was a trainwreck. While my symptoms progressed to the point where I wasn’t sleeping well. I spent many nights having imaginary conversations in my mind with doctors I couldn’t afford to see. Specialist who might be able to help me explain what I was going through. Taking notes for a book no one wanted me to write.
Shame, blame, guilt, denial and crippling loneliness were mine. Yes, and they still are. Only thanks to my growing network within the PD community. While I still feel a great deal of loneliness. I know I am not alone.
Yes, and while the book I’ve spent several years trying to write is still in limbo. Mine and many others like me are at last making a difference. No one deserves to navigate their PD journey alone. We all have the right to tell our story, and we need to now more than ever. All I’ve ever wanted is to love my family and make a difference in this world. Now I can. One, brutally honest story at a time.
