This week’s blog is an excerpt - chapter 15 - from Dennis’s latest book, Parkinson’s & Recreation: One Man’s Journey Through Parkinson’s…So Far.
“I think I am losing my mind, but nobody can tell the difference.”
— Anonymous
According to the Alzheimer’s Association website, alz.org, Parkinson’s disease dementia is a decline in thinking and reasoning skills that develops in some people living with Parkinson’s at least a year after diagnosis. The brain changes caused by Parkinson’s disease begin in a region that plays a key role in movement, leading to early symptoms that include tremors and shakiness, muscle stiffness, a shuffling step, stooped posture, difficulty initiating movement and lack of facial expression. As brain changes caused by Parkinson’s gradually spread, the person may also experience changes in mental functions, including memory and the ability to pay attention, make sound judgments and plan the steps needed to complete a task. Because Parkinson’s disease and Parkinson’s disease dementia damage and destroy brain cells, both disorders worsen over time. Their speed of progression can vary widely.
I know PD will eventually affect my mind. It is a degenerative disease, meaning it is characterized by progressive, often irreversible deterioration, and loss of function, especially relating to my ability to move and in my brain’s ability to process information somewhat rationally. In the case of PD, my movement and brain function are slowly (at least it feels that way to me) deteriorating. The physical symptoms are the most apparent at this point. Others may argue the mental symptoms are leading the way and have been for a long time! Certain things that occur in my life tend to leave me riding the fence as to whether my brain function is normal or if I am experiencing diminishing brain function. Here are a few examples.
Melinda and I are so opposite in myriad ways. She’s a woman. I am a man. She is an extrovert. I am an introvert. She is bluntly honest. I avoid confrontation. She sees the world in black and white. I see it in grey and vivid technicolor (just humor me...I have Parkinson’s). She does not suffer fools. I am a fool she promised to suffer in our wedding vows (a fool in the sense that I love a wry and silly sense of humor and foolishly go out of my way to come up with a good dad joke). She loves Hallmark and Lifetime movies. I would rather face a firing squad. She speaks her mind. I am overtly diplomatic. She reads music like a pro. I play by ear. She is super girly and lives for accessorizing and tea parties with our granddaughters and I enjoy rough housing with our grandsons all over the floor until I become an exhausted, sweaty, immovable blob of a grandpa at the bottom of the boy pile. My point is, being married to one another has caused us to see marriage as an intricate dance because we see life so differently from one another.
Knowing Melinda is like trying to solve the greatest mystery of the universe while dancing to the most romantic music the human soul can muster, all while trying to avoid stepping on her feet…
In college, I would sneak away from the Baptist university I attended once a month to attend a dance at the nearby Catholic college. We could not use the word “dance” on campus, so we called this monthly dance-a-thon a “function.” I was the guy who was raised with African American friends who taught me how to dance. This served me well in college.
Yes, I was the guy at the function who, once the music started ramping up, went into a zone. I became the guy all the girls wanted to dance with because I was so uninhibited (hard to believe, but true) and fun. On more than one occasion, my friend and one of Melinda’s roommates, JR, and I would be going at it so intensely — Saturday Night Fever style — that the dancers would clear the dance floor around us as people moved out of our way to let us freestyle.
I don’t dance much anymore…except with my wife. We have very intimate moments when we are all alone and I put on two of our favorite slow dance songs, both by Ed Sheeran: “Perfect” and “Thinking Out Loud.” These are moments of purest ecstasy and are like a healing balm for my soul. If I were to continue describing our slow dance times, this would be the time where you say with disgust (and a tinge of jealousy), “You two need to get a room!”
Dancing with Melinda is such a blessing to me, but to be honest, the dance gets quite confusing for me sometimes…like when she is needing to talk about her day.
In his article, “A Willingness to Communicate,” online at drjamesdobson.org, respected founder of Focus on the Family, Dr. James Dobson, says a woman needs to say as many as 50,000 words in a day while a man needs to say about 25,000. By the time a man gets through with his day, he has used most of his words. A woman has not! This seems very reasonable and true to Melinda and me!
Throughout the course of our (so far) 39 years of marriage, we have danced the dance of communication fairly well. I have learned to let her talk and have refined the skill of knowing when to interject an occasional, “Is that right?” or “Oh, I’m so sorry” or “Mmm-hmm.”
We perform this part of the dance very well. She gets to share her emotions in words and I listen…until I don’t. I know the you-know-what has hit the fan when she suddenly asks, “Are you even listening to me?” My pre-planned “Of course I am listening” falls apart the moment she asks the dreaded question, “What did I just say?!” Major step-on-foot-of-my-dance-partner moment.
Through such moments, I really have gotten better at listening, but in all fairness, her ability to talk about three or four different subjects at the same time tends to confuse the heck out of me. One second, she’s talking about a conversation she had with her friend Twyla and the next she is talking with me about a jewelry design she has just come up with and then is on to how the children are doing and what cuteness came forth from one of our 13 incredible and amazing grandchildren today…and is suddenly asking me my opinion.
I responded to the last reasonable thing that came out of our conversation with, “I don’t think our 3-year-old grandson should be punished for saying the word “poop.”
She replied, “What are you talking about?! I asked you what you think of these new pink earrings! You aren’t even listening to me!”
I then calmly went through the lineup of conversation topics in the order I received them, resting the defense’s case with the concrete fact that her last comment to me was about our grandchildren.
Her response: “But I was asking you about the earrings!”
I once again went through the conversation in proper sequence and asked, “How was I supposed to know you were asking about the earrings?”
Her very sincere response? “You’re just supposed to know.”
At that moment, I realized either I’d had Parkinson’s for the last 39 years or I have a much longer dance to go in the journey of unraveling the mystery of who Melinda is than I realized!
Recently, Melinda was working on her phone, doing a bit of marketing, and asked me to be quiet so she could select music for a post about her latest jewelry piece. She then said, “Ok, I am done.”
I started watching some dad joke videos on my phone and she said, “I told you I needed you to be quiet.”
I asked, perhaps foolishly, “Why? You said you were done.”
She said, “Because I’m not done.”
How would you interpret that? I have Parkinson’s but…
Melinda has a way of making me laugh that no one else can duplicate. She just lives her life honestly and literally and rolls her eyes at my dad jokes, which only makes me laugh even more. Yet, there are many more occasions when she does something so unexpected that it catches me off guard and makes me laugh uncontrollably.
As an example, we were getting ready for bed recently. Melinda always uses a nasal spray just before bedtime. She had worked very intensely on her jewelry all day and we had received news that a close family friend had been rushed by ambulance to the hospital, so her mind was being pulled in many different directions as we prepared for sleep. Melinda grabbed her nasal spray and, rather than spraying it into her nostrils, sprayed the mist into her mouth. She began choking and laughing and I asked her why she was laughing. She said, “I just sprayed nasal spray in my mouth.” I snorted in laughter, and we got so tickled we could not stop giggling.
After we settled down a bit, she kissed me goodnight and I said, “Wow! That makes my mouth feel so clear and uncongested.” Once again, we began to giggle uncontrollably. As we were still laughing about that, I got a text with the friend's health update and I was trying to read it to Melinda while trying to suppress my giggles. As I attempted to read this very serious text, I sucked in my stomach so as to gain control…and my shorts fell down around my ankles, leaving me completely naked. Thank God none of the grandchildren were spending the night that evening! When that happened, our laughter turned to sheer convulsion and we gave up trying to stop giggling. I slept well that night!
Back to my son Ezra and his way of making me feel loved in the midst of Parkinson’s (death threats aside), in October of 2022 he asked me if I would be offended if he went as me for Halloween. He explained the costume would consist of him walking around with a tremor in his right arm. I told him that would be fine and that I would not be offended. After thinking about it a bit more, he thought it would offend other people, though, so he went as something else. For some reason, it just makes me happy that he would even think of such a costume.
Why do I share such stories with you? Because life is full of moments when we wonder if we are losing our minds. Some are funny moments. Some not so much. I know PD affects my mind…my brain…but I have to be vigilant in renewing my mind and choosing right thoughts despite moments that make me think I might be losing it, whether silly or serious.
I often questioned my sanity long before I was ever diagnosed with PD. On more occasions than I care to count, I have been told I have lost my mind concerning certain controversial matters. During such times, I have often felt overwhelmed by the world’s point of view to the point of questioning my own sanity. Call me crazy and call me demented, but I have a choice as to what I think, and I recognize there may come a day when, due to my age or PD or a combination of both, when I lose control of my thoughts. I am taking steps to counter such a day.
I continue to realize the importance of renewing my mind by speaking and choosing to believe God’s Word about me. I have shared some humorous memories that remind me life, even in its harshest times, can be seen from a joyful point of view. This helps keep my mind healthy. Until the day I die, I will continue to practice renewing my mind.
Here are a few examples of some of the thoughts PD has brought about and how I have chosen to view them:
There are times when I find myself thinking Melinda does not find me attractive anymore. The truth: she tells me daily she is on my team, that we are in this together and that she will give her physical love to me any time I need it. She calls me her man and calls me big daddy and she makes me feel like a man.
There are times when I find myself thinking she needs me to die at a certain age to be best positioned financially for her future. The truth: as a man, I see myself as her provider and will continue to fulfill that role as long as I have breath and capability. She wants us to grow old together. We are getting ready to purchase cemetery plots and are taking legal steps to make our final days a blessing and not a burden to our children. This is what a responsible man does…but I plan on being around as long as I can!
There are times when I find myself thinking people are judging me due to my tremors or facial expression or slowed or slurred speech. The truth: some are. Most don’t. Either way, I am still here and still planning on living the most joyful life possible, PD be damned!
And do not be conformed to this world, but be transformed by the renewing of your mind, so that you may prove what the will of God is, that which is good and acceptable and perfect. — Romans 12:2 NASB
I cherish the funny moments of life and, at the same time, I have found maturity to keep on living by receiving God’s grace during the trying times. This has been accomplished by constantly renewing my mind.
One of the practical ways I am renewing my mind is by refusing to be an angry, selfish man should dementia be a part of my journey. I plan on being kind in my old age, even if I lose my mind. Something that gives me great joy in making such a statement is that I am programming my mind now for losing it later. Seriously.
If I should lose my mind, I want my children and grandchildren to find such joy in talking with me in that state of mind that they fill the treasure troves of their memories of me with funny things I say or do, be it spraying nasal spray in my mouth or be it losing my shorts and mooning the world. I am counting on the grace of God to fill even the mindless ramblings of an old man with such deep joy that I step out of this life into the next with laughter…leaving a legacy of the laughter of a family who dearly loves me and entering into the laughter of a Father God who is so glad I am home He can’t help but laugh!
Dennis Jernigan
This week’s blog is an excerpt from Dennis’s latest book, Parkinson’s & Recreation: One Man’s Journey Through Parkinson’s…So Far. That book is available in paperback, ebook, and audiobook formats at https://tinyurl.com/2s446dnc
Photo courtesy of https://pixabay.com/photos/hat-fashion-style-happy-man-591973/
