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Settling Into My Parkinson’s Disease

A Personal Perspective: Watching my symptoms in year two and year three.

Key points

  • Parkinson's brings myriad symptoms, and everyone is different.
  • Memory and attention problems may come from Parkinson's or just aging.
  • As a scientist, I observe my experiences with Parkinson's as they unfold.
 BRAIN GDJ/Pixabay
Source: BRAIN GDJ/Pixabay

Diagnosed in August 2019, I am approaching the end of Year Three with Parkinson’s. I would like to feel as though I have “settled in” with my Parkinson’s but that is not really accurate. In reading my Year Two blog post, I realize that many of my concerns nearing the end of my third year remain while others have increased. The most obvious ones and the most troubling symptoms, for me as a scientist, surround my memory and attention. I have seen my memory for words or names diminish.

I have seen my ability to multitask all but disappear. I have seen my typing continue to decline. I have seen my ability to follow directions begin to be problematic. I have seen my mood surrounding my cognitive functioning decline punctuated by periodic bouts of anxiety, some nearing a panic attack.

All these symptoms are also symptoms of aging and I have, at 72 years old, an inability to determine whether they are due to PD or simply getting older. This makes my experience of my cognitive problems troubling. I struggle with whether each cognitive misfire is simply because I am getting old and our brains and thinking abilities diminish with age or my PD is the cause.

For some, I can chuckle and just attribute them to getting older, but others still trouble me. In the last year I was administered the Mini Mental State Exam twice about six months apart.

You may remember Donald Trump being interviewed by Chris Wallace and boasting about his fantastic brain. At one point he wanted to show Wallace how good his memory was, and he named five objects that were within his field of view (person, woman, man, camera, TV) and asked Wallace to ask him later to repeat the five words. This is not a traditional brief memory test. On the MMSE you are given three unrelated nouns (and certainly not words that designate physical objects in your field of view) and later asked to repeat them. Both times I was unable to recall all three. I did fine on the other parts of the MMSE but this memory test failure is very distressing.

Digging deeper into my cognitive issues I realize that I am not very good at remembering what I just saw on TV nor am I very good at remembering events/conversations from only a few days prior. And it is not that I don’t have a complete memory of those events/conversations; most often I cannot recall them at all. Many times, when I read something in the newspaper, I cannot recall much. Now, that may just be aging but it is still troubling.

The scientist in me notes those events and as they become more frequent and more salient, I become increasingly more anxious about my cognition. Another oddity is how I will say not only a wrong word but the opposite of what I mean to say. For example, recently I meant to say “yesterday” and instead said “tomorrow.” This happens daily. I am not sure what this means but I have it on the list of symptoms to share with my doctor when I see her in July.

I have always loved to drive, particularly long distances. I used to find it very calming as I listened to music or a ballgame. I no longer can drive at night without getting anxious. I am basically okay driving when I am going somewhere familiar but have problems following Siri’s instructions to places that are not familiar. I turn too early, or I miss a turn. Very frustrating for me (and my wife).

I also seem to have depth perception problems. For example, when I try to pull into a perpendicular parking space, I find that my car is either over the line or at an angle rather than straight in the space. On the freeway, I sometimes have trouble keeping my car in the lane. Again, aging or PD?

Finally, I now have RBD – REM behavioral disorder – which basically means that I act out my dreams This happens about once a night and it is weird, to say the least, to get woken up by my wife telling me that I am slugging the air or pounding the bed. Again, the scientist in me observes.

I am not complaining, just reporting. I have good support systems and use them when I feel like I am losing it. A good support system is most important in fighting all these challenges. My PD doc and nurse practitioner are both very helpful when I am upset. In fact, I recently had an MRI and some neuropsych testing and lab work because I requested them and “look forward” to discussing the results with my doc in my next appointment.

I realize how important my medical support team is and learned very early on that going on the portal and asking the nurse practitioner questions means I get a quick response. I have also joined the mentor program with the Parkinson’s Association of San Diego where I have been able to talk to mostly newly diagnosed people. This helps me realize that while my problems upset me, many of those I talk with have much more serious problems. I feel lucky in comparison.

All in all, as my PD progresses, I try to pay dispassionate attention to my challenges as I maintain my scientist role. Increasingly, however, I slip back out of that role and struggle with aging vs. Parkinson’s symptoms. I think that mostly I am okay, but I am lucky to have so much support when I am not. I am part of a support group of three other PDers that I met in a Rock Steady boxing class for people with Parkinson’s.

We used to meet weekly and now we mostly share and bounce things off each other as we have less time emerging from the pandemic. I have a weekly Zoom happy hour with my oldest and best friend of 51 years and an every-other-week happy hour with my youngest son. My other children are omni-available when I need some support. And most importantly I have my wife. She is always there observing and sharing what she sees. I know it is not easy for her, but she is my in-house support system.

Thanks for reading about my Parkinson’s from both a personal and scientific viewpoint. My meds keep my tremors stable and now it is just dealing with the other symptoms that crop up. I am determined to keep watching my symptoms both as a scientist and as a feeling human being.

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