Walking hopefully into the future with Parkinson's disease together

On Monday, 15 December 2014, my husband was hit by a bus.

No, not literally, but those were the words he used to describe his feelings when he was diagnosed with Parkinson’s disease (PD). Despite following healthy eating guidelines, and leading an active lifestyle with plenty of exercise, regular military physicals and PT tests, he had just been told that he had progressive, currently incurable, degeneration in his brain.

Life is what happens while you are making plans

Dave was just 62, I was 51. We had been married for only four years. We had big plans to travel the world together. Now here we were, sitting in a small office at Johns Hopkins digesting the news that he “might be in a wheelchair in five years, or might still be independently mobile in twenty. It’s a boutique disease, and you can’t make any predictions about how it will progress in any one patient.”

Not a boutique that most of the people I know would want to shop in…

Our movement disorder specialist went on to tell us that the classic presentation of PD is TRAP:

Postural instability

“Trap” certainly seemed like an accurate acronym to us, even though tremor and rigidity were the only components that Dave had experienced to date.

But wait, there are many more optional extras available in this “boutique!” Hypomimia (a lack of facial expression) is almost obligatory, and can make it difficult for others to read the mood of the PWP (person with Parkinson’s). Anxiety and depression are common – not just a response to the diagnosis, but a true effect of the lack of dopamine in the brain. Speech may become quieter, slower, and slurred – PWPs may be ignored when trying to express themselves, or even believed to be drunk. Sleep disorders are very common – daytime drowsiness, inability to sleep at night, acting out dreams. Hallucinations may occur, and cognitive issues can be a direct result of the disease or a side-effect of the medications. Non-motor effects may include dry eyes, drooling, constipation… Dave’s long-standing loss of his sense of smell was probably the first sign of his undetected PD.

Parkinson’s affects so many…

We felt very alone that afternoon. But in truth we were just one of over 240 families in the US receiving the same news that day, with many more throughout the world. Yes, if PD is a snowflake disease (every one unique), then we’re facing a blizzard! Some 60,000 new cases of PD are diagnosed in the US per year, and an estimated 7 – 10 million PWPs are living worldwide. The good news is that PD is not, in itself, fatal; the bad news is that there is currently no cure. Dave won’t die of Parkinson’s, but he will die with Parkinson’s.

Although there is no cure for PD at this time, there are more, and better, options for treating the signs. On the flip side, side effects of the medications may include compulsive behaviors (shopping, gambling or sex!), dyskinesia (exaggerated movements in response to high dopamine levels), cognitive problems and more. Tremors may respond to deep brain stimulation using focused ultrasound or implanted electrodes (keep the control pad away from the grandkids…).

In case you hadn’t noticed, humor is key in our house!

Future treatment options may include therapies to remove the α-synuclein protein deposits in the brain, or stem cell therapies to replace the dopamine-producing neurons. Only time and ongoing research will tell.

Learning to adjust

The first stage of grief hit—numbness and shock. Neither of us experienced denial, but we were faced with the difficult task of letting the extended family know. We read extensively. Lucky Man: a Memoir by Michael J Fox helped greatly with our attitude. Waves of anger, bargaining, occasional depression…

Our awesome team (Doc Mills and Becky) at the Johns Hopkins Movement Disorder Clinic encouraged us to join a local support group. We went to the closest meeting and came home thoroughly depressed! Most of the PWPs in that group were in the later stages of the disease, many in wheelchairs. Undaunted, the doc redirected us to a new group for “newly diagnosed and young onset” patients, and their care partners. We met some folks in their 30s and 40s whose careers had been significantly impacted by the condition; at least Dave had already retired.

Despite the common perception of PD being an “old person’s disease,” some 4% of sufferers are diagnosed before the age of 50, some even in their teens. Everyone in the group speaks of a sense of urgency; nobody knows whether their Parkinson’s will progress slowly or rapidly and they are all determined to do as much as they can, while they can. So many talented people, working on heirloom quilts, building their own adapted houses, traveling… living their lives to the fullest.

The journey of a thousand miles begins with one step

Acceptance set in, and Dave volunteered for a clinical trial. It is a 3 year double-blind trial, so we have no idea whether or not it will help him, but he rationalizes that at least the results will help other people. I have dedicated a portion of the proceeds from my convergent media art to the Michael J. Fox Foundation to help fund PD research. We are considering becoming Parkinson’s advocates, helping to raise awareness of the disease and overcome the difficulties faced by PWPs.

We have become accustomed to only 4 – 5 hours of sleep at night. Progression is obvious to us both, although not dramatic at this stage. Dave has gone from taking no medications to popping 18 tablets (four different medications) per day. Timing of these doses is critical, so he has a series of alarms set up on his phone. He is supposed to take a nap every afternoon, but is not very compliant! I have reduced my working hours, and shall retire from my day job in March 2017, so that we have time to travel whilst we can, and build our joint memories together.

In summary, neither of us know where this journey will take us, but we do know that we are traveling the road together, and that we are blessed to do so. We shan’t give up hope of a cure during his lifetime, and are very grateful for the collaboration between Charles River and the Michael J. Fox Foundation. We know that we are not alone!

This blog post was based on a post that I originally wrote for my employer:
Baker, Julia. We’re Facing a Blizzard. Eureka blog. May 18, 2016. Available: http://www.criver.com/about-us/eureka/blog/may-2016/we-re-facing-a-blizzard