Like Me               DaTscan               NOT Me

In an earlier post, I mentioned “a distraction” that has monopolized quite a bit of my time in the last few months. Not the hernias that seem, in retrospect, a non-issue in comparison. That was dealt with in quick order, and with the exception of two tiny and quickly fading incision scars, hardly deserves any mention at all.

The “distraction” started back in the early spring of 2021 with a general wellness exam with my new primary care physician. But more accurately, the distraction FIRST made a significant appearance in May of 2016 when my Route 66 tour group I was leading for Adventure Cycling took a rest day in Santa Fe New Mexico. We were holed up for two nights at a hostel and I had a lower bunk in a co-ed dorm. In a dream one night, I experienced something attacking me and kicked at it. I quickly woke up realizing that yes, I kicked at the offender in my dream, but also kicked at it for real. I kicked so hard, I broke my big toe on the underside of the bunk above me.

The tour was challenging enough, but took on a new flavor riding the rest of the route to Chicago with a broken toe.

Since then, the frequency of acting out my dreams has increased and Karen can verify that I’ve become increasingly “difficult” to sleep with. (I’ve been told that before, but never really thought about it in quite that way.)

​In fact, Karen has witnessed / experienced enough of my nocturnal outbursts to raise concerns about it, her own safety in particular.

So in the general discussion with my PCP last spring, I noted this issue, asking what might be going on here. I thought perhaps she might recommend seeing a shrink … that would seem reasonable. But no, not a shrink (just yet perhaps), but a sleep study … a polysomnogram. OK … So I go to the University of Rochester sleep center one night, get all wired up and hit the sack. Shortly after, I see the report:

“There was increased muscle tone and gross motor activity during stage REM, consistent with REM Behavior Disorder.”

Idiopathic REM Behavior Disorder, a parasomnia … aka RBD. “WTF?” I ask. The internet comes to my rescue from ignorance. RBD is a condition where the normal skeletal muscle paralysis during REM stage of sleep doesn’t happen. The reason paralysis is “normal” during REM is exactly so that you don’t do what I’ve been doing … kicking, punching, flailing around, jumping out of bed, etc, etc. … so that you don’t hurt yourself, your bed partner, or destroy your bedroom furnishings.

So, the sleep center docs take me under their wing and counsel me on how to prevent injuries. Sleep alone, put your mattress on the floor, remove everything (including weapons … they’re serious … I’ve read the stories!) from the area, pad corners of furniture … essentially create a padded cell. And … there are drugs to help. One commonly used one has some nasty side effects, so they recommend melatonin as reasonably effective, but far safer. OK!

So, I hit the interwebs to learn more about this crazy thing, and I learn something else. You could call RBD “brain damage” or “brain disease” if you like, but that’s nothing compared to what it could ALSO be: a prodromal symptom of a synucleinopathy, like Dementia with Lewy bodies, multiple system atrophy (MSA), or … Parkinson’s Disease (PD). Depending on which source I read from … Parkinson’s Foundation, Davis Phinney Foundation, Michael J. Fox Foundation, NAPS Consortium for RBD … I see estimates of between 75 to 91% of people with RBD eventually develop Parkinson’s primarily, and the other two significantly less frequently, but no less scary.

To be honest, I’ve never been the kind of person who ever thought: “Oh, that will never happen to me!”  like so many people do about things like getting caught drunk driving, dying of cancer, or getting killed skydiving. Getting close to the last of those three taught me otherwise. 

And I learned a lot about the research that’s been done to date regarding risk factors for PD. They say genetics loads the gun, but environmental factors pull the trigger. Suspected risk factors include:

1. Exposure to heavy metals.

    Does melting lead bullets on a skillet in the kitchen as a kid to pour into molds to make fishing sinkers count? How about working in the foundry of a car battery factory molding the lead grids?

2. Head trauma.

    That wicked crash on my mountain bike where I did a pile-up on my head, ended up in ER with a concussion, and was a spinal wreck for a good 6 months before I could even get back on the bike … I still occasionally visit the bone jerker to unkink the neck.

3. The “gut-brain axis” … H. Pylori infection. 

    Check! Even ended up with a duodenal ulcer.

4. Industrial solvents: Trichloroethane.

    15 years in mold making and using “T” on a nearly daily basis. Check!

I understand enough about statistics and risk factors to recognize what that 75-91% mentioned above really could mean for me.

I’ve read all of Michael J. Fox’s books and I’m reeling at the impact on his life, but damn thankful for what he’s accomplished. I’m learned that some friends in the bike club have volunteered to ride and raise money for Parkinson’s research because it hit close to home for them. And I’ve also learned that a couple friends in the club have developed PD, and that helps me face the statistics as well.

So what to do?

Volunteer! What have I got to lose? I plan to join the bikers in the next Ride for Parkinson’s this year to raise $$ for the Fox Foundation, but that doesn’t seem like quite enough when I could help with a clinical study, and there IS one the UofR is involved with … the Parkinson’s Progression Markers Initiative (PPMI) funded by the Fox Foundation. They need people who have “risk factors” (RBD being a big one) but not yet diagnosed and taking meds for PD. That’s me, so I sign up to volunteer!

They have to screen candidates for the study and step one is a smell test. It seems loss of smell (NOT related to COVID, obviously) is an early sign. Karen has always commented on how I can’t seem to smell anything she picks up easily. I assumed my nose was blown out from trichlor! I take the test and wait for results. The next thing I know, I’m asked to proceed to the next screening test. I guess I failed that one spectacularly!

The next step is a DaTscan. It’s a brain imaging test that can see dopaminergic activity, or the lack thereof, in the area of the brain that’s responsible for PD. I get that done, and wait.

I got a call back from the PPMI study coordinator at UofR.

The DaTscan results:
+++++++++++++++++
FINDINGS:
There is bilateral normal symmetric uptake within the putamen and caudate nuclei.
Impression
Findings not suggestive of Parkinsonian syndrome.
+++++++++++++++++

I’m NOT eligible to participate in the study. And I found myself quite disappointed, a bit sad. Too much time as a Boy Scout, too much time as a Coast Guardsman, too much time volunteering for all kinds of things over a lifetime has kinda made my life all about serving and helping others. And here, where I thought I might have a way to really help find a way to stop this terrible disease, I’m not invited.

But then, a sigh of relief. A huge weight off my shoulders. I realize that I’m a statistical anomaly. I’m surprised considering all the risk factors (and some non-motor symptoms) I’ve checked the boxes on. That’s not to say there’s NO chance I might have something develop later, and I still have to deal with the ongoing impact of RBD, but for the moment I’m happy to know I’m NOT expected to develop PD. I’ve dodged the bullet.

For a comedian's take on RBD ... funny ... but ...  

https://www.youtube.com/watch?v=B02NsP33pRM&t=7s

​Now, back to Biking!

What a difference 24 hours can make!

A cool and foggy / windy day to start the New Year. But then ...
​

​2022 off to a great start! Cheers!