I’m delving into the personal today, so bear with me. This is not an easy blog to write. As you know, I feel much more at home staying away from home and looking at the world from a safe distance of at least 30,000 feet. Hmmm, maybe that’s why I became a pilot. That’s probably another blog and another few months of therapy, and I am not here to write about me…not really.
I’m a big believer in just letting it out there, in ripping off the bandage and getting the screaming over and done. It only hurts for a second, right? And then one can get on with dealing with whatever circumstance dares infringe upon an ordered life. That philosophy has served me well over the years with the exception of that which is most personal. I’m a compartmentalizer; I shove it to the back of my mind and think about it later when I’m sleeping…which probably explains why I never sleep, and that’s another session for Dr. Glass. Not today, however. I have a little public ripping and screaming to do in anticipation that perhaps our family journey can be of some comfort to others.
Deep breath, swallow that lump, and let the cutting loose begin…
Regular readers know, or at least have an idea, that I have been in a loving, committed relationship for more years than I am worthy. In most states, that would legally be a marriage, but not for us. We have long sense made our peace with the inequalities of wedded bliss in the United States, and we have bound ourselves legally in other ways…the pocket-power-of-attorney; don’t leave home without it. Standing in the majesty of nature’s purple mountains, we made our own vows. It is not a stretch to imagine that archaic “obey” oath being excluded to the preference of compromise and respect, but it was important to us both to include the traditional “in sickness and in health”. You just never know…
*insert sound of flesh being ripped apart from the Band-aid*
A few months ago, at the age of 36, my Randi was definitively diagnosed with Parkinson’s Disease.
*insert scream and four-letter expletives here*
Before I go on, I want you all to work through the shock and those images of Muhammad Ali and Michael J. Fox in your head. It’s fine, we have. In fact, the first year and a half with symptoms we expertly navigated the murky waters of denial.
“What do you mean you can’t work the computer mouse? It’s broken, throw it away and we will get a new, more sensitive one…”
“A tingling, and painful right arm? It must be overly compressed cervical discs…and there’s a doc for that. Surgery? Sure…”
“What, after all that, there is no change? A neurologist? A movement disorder specialist? Sure, I’ll go with you…”
I sat there watching Randi struggle to tap her right toe, repeatedly wrestle with touching her right finger to her thumb, and try over and over with little success to “screw in a light bulb” with her right hand. As the second opinion was announced, my scientific mind dropped the pretense and my heart sank into a silent scream…thus ending my own personal journey on the surface of denial.
I am certainly not one of those of the conviction that the onset of death and disease is God’s will. My God doesn’t pull vengeful shit like that. The human body, though miraculously created, is a complex, organic cluster of chemical reactions that unfortunately fail sometimes. I admit there is a certain psychological comfort provided by blaming this on some higher power, but in my mind, I knew better…I know better.
We all plot our personal course of comprehension at different speeds, so I held my life partner as tightly as I could to her repeated chorus of, “no, no, no…” Randi is a spreadsheet builder, a number cruncher, and an executive financial officer whose professionalism leaves no doubt why certain levels of her career choice are called controller. She needed a picture, something definitive to point to, and then sum it all up. In a couple of weeks, we got that opportunity. From the Michael J. Fox Foundation website, Randi sent me a link to a new diagnostic tool, called a daTscan. The Fox Foundation blog post was announcing the FDA approval of this particular brain scan in determining presence/absence of dopamine, a neurotransmitter released by nerve cells in the brain to send to other nerve cells in the body. Parkinson’s is caused by loss of dopamine-secreting neurons in the mid-brain.
The search was then on to find a hospital and a daTscan. The technology is so new that most of the instruments are for research hospitals only and are not commercially diagnostic. We sat at the computer and kept searching. New York City. OK, there are a few friends that we owe a dinner and a conversation, so that’s doable. Minnesota? Ooooh, too cold right now. Mayo in Phoenix? That’s certainly manageable. We can make a day trip out of it; call and make the appointment. Upon making the call, we learned that the website had not been updated, and there is an instrument here in town. Good news at last. Here is an example of the scan.
The bright red comma shape of a healthy hemisphere compared to the stark, point of a Parkinson’s-like period, is all Randi needed for acceptance. Now, I won’t voice my disdain here for insurance corporations and what five politicians in black robes might do to a limited but better than nothing Obamacare, I will just say that no matter what the out of pocket expense for the commission of this particular portrait, it was worth every dime. That picture became the vehicle upon which we, as a family, could move forward together. Well, after a small meltdown session, and a day on the couch eating ice cream and watching marathon house hunting on Home and Garden TV.
It’s been a few months now, and life goes on. I know there are probably a few questions from those who know us about symptoms, so let’s get to it. Does Randi shake? Not noticeably, but yes, she shakes when she gets emotional, and you can pretty much blame me for much of that. Just like any spouse, I am exasperating at times. I leave my shoes on the floor, my bowl in the sink, and my coffee cup(s) everywhere…not to mention on the very rare occasion, I can be a bit of a smart ass. Sometimes, though, I think she picks a fight with me on purpose…there seems to be a direct correlation between our fights and the sound of ice in the martini shaker.
Does Randi drag her arm when she walks? Sometimes, but I bought her a fabulous new purse with a shoulder strap that seconds as somewhat of a sling…but who notices the arm with that gorgeous purse around it?! And some people say shopping is a waste of time. Does she limp? Only when she walks. Randi also has an impressive, but unfortunately unnecessary, scar from disc surgery that runs horizontally across her neck. I have to say here, honey, please stop telling people you got your throat cut wrestling me out of a biker bar. I’ve had my rebellious years and I still love leather, but the Harley drivers I know presently are mostly attorneys. The closest I ever get now to the real Sons of Anarchy is following Kurt Sutter on Twitter.
Is there pain? Yes. Only about one percent of patients have associated chronic pain with PD, and unfortunately this is the mega, low-chance lottery she hit. Having been recently accepted into a clinical trial for a new drug, however, we are hoping within a few weeks the pain will subside. On the bright side, for now, Vicadin is prescribed in the party pack size as if we purchased it from Costco.
I write this blog not to embarrass Randi, though I’m sure it will. She understands that this very personal account is to let others out there with Parkinson’s Disease and other movement disorders know that they are not alone. In contradiction to some very worthwhile campaigns, it doesn’t always get better, but in having others to help you share your burden, the tiresome effects of carrying that weight in isolated totality become tolerable.
A couple of years back, I interviewed entertainment reporter and breast cancer survivor, Lisa Bernhard. I am inspired by all that she and Matthew Zachary have done with, Stupid Cancer, and the advocacy they provide to young adult cancer warriors. It is Randi’s and my desire to take a page from their playbook and do something productive for others. Let’s face it, there are just so many days the two of us can spend on the couch with Ben & Jerry’s Chocolate Therapy and annoying home improvers. So why not channel the times of frustration into something that can make a difference? From what the doctors tell us, only 3% of diagnosed Parkinson’s Disease patients are in their 30’s, and there is very limited patient resources in the form of support groups and communication sites for those with early onset PD. There is our outlet; see a void and fill it. We are pretty savvy at social networking and websites, and when we approached the Brain Center with the idea, they immediately voiced interest in partnering. Lisa and Matt have “Stupid” pretty much to their own, so what do you think of putting F*cking Parkinson’s on a t-shirt? Or the “heroes of FUPD”? We’ll work on it in the next few months, and of course, we welcome any feedback and assistance we can get.
How are we? Oh, we have a new normal based around cell phone alarms signaling the appropriate pill popping times, but we can do that. As the doctor said, this is not a death sentence, and I’m going to hold him to it. I have a very strong faith and I believe in the power of prayer, but I am a scientist, too, and just as strongly, I believe in the God-given gift of beautiful minds and research. I believe with all my heart there are breakthroughs on the horizon. To say that I go to bed at night without any fear to hide away somewhere, I would be lying, but every night as I lie beside her and feel the effects of a tremorous consciousness fall victim to the welcome stillness of rejuvenating slumber, I am not afraid.
We spend quite a few hours in hospitals and waiting rooms now, and as we sit there, hand in hand, and observe so many of those suffering around us, we feel so very fortunate. We have each other and all those wonderful years ahead of us. Sure, they make look a little different than we imagined them six months ago, but time spent together with the person you love is precious time…no matter how shaky it gets.
We are blessed…and have been from the beginning.