You may have noticed I’ve been AWOL lately, but I’ll return with more TV movie reviews this summer. Earlier this month I planned to write a post about the ways in which my life has — and hasn’t — changed since being diagnosed with young-onset Parkinson’s disease last June. The anniversary of that date came and went, lost in the shuffle of everyday life, including some YOPD nonsense that’s been taking up a lot of my time these days. I might as well address some of it now.
8/27 update: Twirl review coming by Tuesday at the latest; got waylaid by continued shoulder problems. Thanks for your patience!
TV movie fans: I’ll be back soon with a look at “Twirl,” a very special exploration of the ultra-competitive world of baton-twirling starring Lisa Whelchel and Erin Moran.
“How has your mood been lately?” the neurologist asked last week at my first follow-up appointment since being diagnosed with early-onset Parkinson’s in June. I was there for the neck and shoulder Botox injections that were previously delayed by levodopa adjustments, but she set aside extra time to discuss the diagnosis itself since our last meeting had been rushed.
Let’s cut to the chase for this one, without our usual banter. This week the neurologist confirmed that my recently diagnosed dystonia is a symptom of what we hope is young-onset Parkinson’s disease. We hope because there are less attractive options, including multiple system atrophy and progressive supranuclear palsy. All are clinical diagnoses, not things she can order an easy test for, and they share many symptoms. If it’s MSA or PSP, it will become more apparent in time. For now, we’re calling it early Parkinson’s, since the other options usually afflict older patients. You can read more about YOPD here.
My wife, Crankenstein, accompanied me to the appointment because she knew what was coming and wanted to talk with my movement disorder specialist (MDS). She shared observations about my muscle rigidity and bradykinesia, reduced arm swing, diminished sense of smell and increasingly inexpressive face, which the doctor also noticed. We cataloged the positive changes that I experienced after treatment with Botox and levodopa. I mostly sat there and looked pretty when I wasn’t failing the usual movement exam.
First of all, TV movie fans, I’ve planned something special for Mother’s Day, so stay tuned for that. But this post is about a sleep experiment recently conducted to better answer my neurologist’s question about overnight behaviors. An ex complained quite a bit about my sleep but my deep-sleeper wife never has, so I needed a way to watch it myself.
On this night in Bruce Springsteen history, the E Street Band took the stage at the Los Angeles Memorial Sports Arena in 1988 and performed a stately, slow-burning rendition of “Tougher Than the Rest” that appeared on the Chimes of Freedom EP and became a music video. The video, which intercuts that live performance with clips of couples goofing around or canoodling during the Tunnel of Love Express Tour, is notable for its inclusion of same-sex pairings, but we’re here today to discuss something else entirely.
“Tougher Than the Rest” is, in Springsteen’s estimation, his best love song, an eloquent but rugged ode to emotional staying power. Its official video has been viewed more than 140 million times on YouTube, where comments testify to its near-universal appeal. There you’ll find countless reminiscences of enduring loves, late spouses and what “Tougher,” with its boast of “Well, if you’re rough and ready for love/Honey, I’m tougher than the rest,” meant to those unions. I’m not exempt from that sentimental impulse; the track means a lot to me as well.
The Los Angeles concert was filmed in the waning days of Springsteen’s marriage to actress Julianne Phillips (of Sisters and Original Sins). Theirs was one of the most scandalous celebrity splits of the ’80s, and the “Tougher” video illustrates why: The romantic tension between Springsteen and bandmate Patti Scialfa—soon to boil over publicly, when they were photographed together on an Italian hotel balcony, bleary-eyed and barely dressed—was such that Phillips could’ve submitted the tape to any judge in the country and been granted a swift divorce.
Last month I pledged to answer questions about the strange turn my lengthy medical mystery took after I was sent to a neurologist. Here it is, in Q&A form. To spice things up, you can pretend the late James Lipton, host of Inside the Actor’s Studio, conducted the interview. And, as always, more telefilm reviews are coming soon, including special appearances by our patron saints, Kate Jackson and Judith Light.
The first round of Botox is already wearing off, which is normal earlier on, as the doctor experiments with dosages and injection sites. The levodopa has been great for my dexterity, slowness and rigidity, which confirms the neurologist is on the right track. Now the question is whether I have dopamine-responsive dystonia or young-onset Parkinson’s. In June I’ll learn whether I have to undergo more tests or if the doctor has already made a decision.
All good slippers are ancient and covered in dog fur; mine are no exception.
Some of you have reached out in recent weeks with words of encouragement or to ask what’s going on, and I wanted to provide a quick update and also say thanks. Here’s where things stand:
After nearly two years of strange health problems and many unhelpful tests and appointments, my PCP referred me to a neurologist. That doctor then referred me to a movement disorder specialist (MDS), another type of neurologist, believing I had cervical dystonia.
In February, the MDS confirmed that diagnosis and also found I was generally dystonic. I’m an all-around shaky sonofab*tch, and she noted other movement disorder symptoms that are mentioned here.
The most effective treatment for dystonia is Botox. Today was my first round of neck injections, with a bonus shot or two in my shoulder. I’m not fearful of needles, as you might expect of someone who injects immunosuppressants 78 times per year, so that was uneventful, though I’m concerned my neck might start behaving like a Real Housewife now that it’s been Botoxed. If the injections work, she’ll administer them quarterly.
This week the MDS additionally suggested I try carbidopa/levodopa, also known as Sinemet. This can help with some forms of dystonia, though it is more widely known for treating Parkinson’s, which has its own special relationship with dystonia. I agreed to try it. That experiment begins in the coming days and I’m having a brain MRI next week. My symptoms are largely left-sided and that can help rule out a stroke, which is unlikely at my age.
3/20 update, Botox: It took the Botox a week to settle, just as the doctor predicted. My neck is no longer stuck in one place, and any fears that it would turn into Luann de Lesseps were misplaced. Unfortunately, my shoulder remains a work in progress. It was hard to open my mouth for a couple days post-Botox, which dampens whatever interest I might’ve had in attempting to treat my oromandibular (jaw and mouth) dystonia with injections.
3/20 update, MRI: My brain MRI was normal, as the neurologist expected; it was a formality to verify there was no evidence of stroke or multiple sclerosis. There was also a neck MRI, which showed arthritic damage and several “mildly bulging discs” that might exacerbate my arm and shoulder problems.
3/20 update, Levodopa: I’m taking carbidopa/levodopa to see if my motor symptoms respond to it. I’m not sure what upset my wife more, that I was prescribed this medication or that I’ve had a positive response to it, but so far it has gone well. If that continues, it raises the question of whether I have dopamine-responsive dystonia (DRD), which seems unlikely for a couple reasons, or if my dystonia is a feature of Young Onset Parkinson’s Disease (YOPD). Since I have some symptoms of the latter, going back to as early as 2013, we’re more concerned about that possibility right now.
How do I feel about this? I don’t know. It seems pointless to get worked up over anything when we’re uncertain whether the dystonia will worsen, or if it’s a standalone issue or harbinger of something else. My wife is wired differently and this has been hard on her—she was unmoved by my idea to review Awakenings (streaming free at Amazon!) once I’ve taken levodopa for a few weeks.
This embroidered piece is my latest Hitchcockian artwork acquisition.
The brain is my wife’s favorite organ, one she studied for years even prior to medical school, and she speaks of it with the kind of passion and reverence I normally reserve for Judith Light. When we met, she could tell I was neurologically “different,” which means less than you might think. “Different” brains, like bad childhoods and pretty much everything else that’s currently having a prolonged (and occasionally irksome) cultural moment, are a dime a dozen. Possessing one makes you no more virtuous or villainous than anyone else, no matter what the Internet tells us. Heck, most of you reading this right now probably have unusual brains—who else enjoys Afterschool Specials that much?!
Nevertheless, in the early days of befriending and then dating a physician, I often felt strangely vulnerable. It reminded me of how tennis players describe the brutal solitude of the court in exposing their deficiencies. (Pete Sampras, a master chronicler of this, said “It’s one-on-one out there, man. There ain’t no hiding. I can’t pass the ball.”) Before our first date, I laid my cards on the table: the lifelong history of IBD, the surgeries, the related conditions. And, less importantly, a former partner’s insistence, equal parts bitter and rueful, that I was autistic and therefore at least partially defective.
Here’s the obligatory follow-up to the ongoing saga of my body not being a wonderland: I saw the neurologist at the movement disorder clinic this week, which was earlier than expected. She confirmed the diagnosis of cervical dystonia and threw in a curveball that hit me right in the face (on account of the clumsiness) by asserting that I belong to a smaller subset of patients whose dystonia extends to other locations. It’s not just confined to my neck.
To be clear, I’m not shaky on the order of Katharine Hepburn… yet. But who knows what the future holds, because she explained that, for some of us, things “progress.” This isn’t what one expects to hear at the culmination of a long strange trip with origins in their underarm, of all places. Admittedly, I’ve not been a model of great health during my brief tenure on this planet, but my biggest problems have reliably involved bodily systems light years away from the brain.
Not pictured: Dr. Seth Hazlitt, who was busy with chowder.
This week I disappeared from the Internet (much to the Internet’s relief) to take care of a medical issue. I’ve had problems with the upper left part of my body for over a year now and was subjected to CTs, mammogram and an MRI during that time, mostly to confirm nothing needed to be biopsied. Fortunately, I got the all-clear on that. But the unexplained pain and discomfort continued, disrupting my sleep and enhancing my crankiness.
I returned to the PCP recently and asked what to do next. She considered an orthopedist referral before sending me to a neurologist. This week, after a physical exam, the neurologist thinks he has identified the problem. It’s something I hadn’t heard of before: cervical dystonia, also known as spasmodic torticollis. The word “spasmodic” conjures images of wrenching spasms or tremors, but I’ve experienced neither.
