Next Steps

My long journey to a Parkinson's disease diagnosis was confusing and frustrating, but there was some comfort in having an answer. After years of wondering what was happening to me, I finally had a label and could develop a plan of attack. I was briefly relieved, until reality began to set in.

Dr. Elisabeth Kubler-Ross describes grieving as a five-stage process: denial, anger, bargaining, depression, and acceptance. I've been in all five of those places, sometimes all on the same day. It's not a steady progression, and I'm certainly not finished yet - I've really only just begun. Although Parkinson's disease tends to shorten expected lifespan slightly, it's not a fatal disease - many people with Parkinson's live long lives after diagnosis, with slow progression and years of good function. Unfortunately, although the speed of progression and the details are different for everyone, the direction and result is always the same.

With what I now know about this disease, I am amazed and awed by PWPs and their care partners, families, and friends who have been fighting back for decades against this slow thief of health and vitality. Parkinson's steals not only the ability to move and communicate effectively, but it also damages self-esteem, destroys relationships, halts promising careers in mid-stride, and sentences both PWPs and their ecosystems to a seemingly eternal cycle of medication, daily struggles with the basic activities of living, and a slow decline in spite of heroic efforts. A friend and fellow PWP once told me that Parkinson's is like, "being stuck on the railroad tracks in front of a slow-moving train - you know it's coming, but even though it takes years to get there, you can't get out of the way and you can't make it stop."

Since my diagnosis, I've worked to get the medications right and fought my way through debilitating side-effects just as every other PWP has at some point. I've lost friends I've known for years who just stopped responding to attempts at communication, and I've made many new friends in many places, including our AAPSG support groups (if you want to meet some really fascinating people who don't quit and who usually have a joke or story to tell, come to a support group. Sometimes the jokes are agonizingly bad, but we're all forgiving people). My family and I have also worked (and are still working) through the fear, uncertainty, and anxiety that comes with a diagnosis of a progressive, incurable illness. How long will I be able to continue working? What happens when I have to stop? How fast will the disease progress? How will our family change? Will we be OK?

The AAPSG, APDA, and other organizations can provide excellent resources, guidance, and referrals to help families answer these questions, but like the disease itself, the answers are different for everyone. In my family, we don't have these answers yet, and we're struggling to find them. However, what we do have is mutual love, commitment, and a dedication to finding the answers together. In this, I'm very fortunate.

It's become apparent over the last two years that I am particularly susceptible to side-effects from PD medications. I've described my problems with nausea (perhaps to the point that you're saying, "I GET it - stop, already."). I also have significant nighttime insomnia and daytime sleepiness, including sleep attacks from the dopamine agonist. Recently, I've begun experiencing other effects from the agonist (when you see a squirrel run across the living room floor and your cat on the couch doesn't move, that should tell you something). I also have the most well-equipped home theater and home automation system in the neighborhood, and I can't really tell if that's just because I like electronics and gadgets, or if Requip XL's notorious "compulsive behavior" side-effect is rearing its head. And, although it's a little unusual, I've begun having on-off problems and beginning-dose/end-dose dyskinesia from the levodopa.

With this spectrum of side-effects, increasing the dosage of my medications isn't an option. At this point, I can't go up in medication without more severe side-effects; I can't go down without being off most of the time. According to the advice of my neurologist, my neurosurgeon, and multiple alternate opinions, it's time to consider deep brain stimulation surgery (DBS).

I've only had a PD diagnosis for about two years, and I'm on the young side for having the surgery, so I've been resisting the idea for some time. When my neurologist first recommended it, I said, "You've got to be kidding - that's for late-stage Parkinson's, after everything else stops working, isn't it?" I apparently have a limitless capacity for being wrong, and I was this time, too - DBS actually works best for people who are still getting some benefit from medication, but perhaps with unacceptable side effects. It also seems to work best for people who are relatively early in the disease, who don't have other complications or significant cognitive impacts, and who are not falling often. Me, in other words.

So, after weighing the risk factors and evaluating the data (did I mention I'm an engineer?), I've decided to have DBS surgery in early June. Between now and then, I have a neuropsychological exam and a full-anesthesia MRI to do, and a few other things to get organized and put in order. We're talking brain surgery here - no matter how you look at it, there are risks. Even though the likely outcome will be very positive, my family and I have to prepare for all possibilities. This situation gives my typical approach of hoping for the best and preparing for the worst a whole new intensity.

Hope is good - it keeps you going when you might not otherwise. I'm hoping for the type of outcome I heard about from a new friend I met in Istanbul this month (thanks, Shelly and Warren :-), from a friend I met in DC last month (thanks, Greg:-), and from the experiences of people like Davis Phinney, the Tour de France cyclist who was brave enough to have his DBS surgery filmed for the benefit of our community. I have a great health care team, people I trust to give me advice, one of the most experienced neurosurgeons in the country, an outstanding neurologist who always tells me the truth (even if it stings a bit), and friends old and new that regularly bring tears to my eyes with their kindness and caring. I'm also surrounded by a loving family who are willing to do whatever it takes, even if we don't know what that means yet. With all that going for me, what's a little brain surgery?

So, onward through the fog. Next time - the lead-up and a description of the procedure itself.