Hindsight is 20/20:
Thoughts from an Old, Young Onset

What to Keep, What to Toss

The following is an edited version of the address I gave to the YOPD attendees of the Davis Phinney Foundation Victory Summit in June 2021…

When I was at the last World Parkinson’s Congress in Kyoto, I passed a room that had vibrant energy pouring out through its open door. The room was full of people with young onset PD. They were a talkative, vivacious group. But as I peered in from the outside, a realization came to me: I was no longer a young onset patient. I was an “old” young onset patient. And at that moment I thought, we need each other.

The younger set could learn from us older young onsets about how we had managed with families and work, how we dealt with having to trash our long-held dreams about our future, from whom we hid our disease, what advice we had about financial planning, etc.  In exchange, our weary efforts could get a dose of their youthful energy, and fresh determination to advocate for our voices.

This got me thinking—if I were diagnosed again at age 42 and had to relive my experience with PD, what would I change and what would I keep in my approach? The different answers to that question will be the focus of my talk today…

Approaches I Would Keep

One:
Having Faith in my own perceptions

When I was diagnosed, to my surprise, my doctors advised me to limit my movement. This was the pervasive and accepted attitude toward exercise at that time. Their fear was that strenuous or complex movement would lead to a fall which would accelerate decline.  But they didn’t appreciate the level of physical training I had as a professional dancer. My knowledge of the body was extensive and I knew I was at my strongest when I was training hard.  Furthermore, I found the fact that I had a movement disorder, but was given no physical instruction about how to move odd. So, in the absence of medical guidance, I tried to analyze my movement and challenge my body.

Today consistent exercise is the first thing doctors recommend to patients. If I had not trusted my own instincts, I would have deteriorated faster and my life would have taken a very different course.  To be clear, I love my doctor and I am thoroughly dependent on her knowledge of the disease and the drugs that are available to me.  But do not underestimate the power and validity of your own perceptions. They saved me and they can do the same for you.

Two:
Analyzing and thinking about my medication

A few years into taking meds I asked my doctor “how can I get the most out of the medicine I take?” She said take your meds on an empty stomach with a full glass of water and wait about 30 minutes before you eat. I kick myself for not asking this question earlier, but it has made me more attuned to how my food intake impacts the effectiveness of my medication. Tinkering with this interaction has allowed me to get more out of my meds.

The other aspect of analyzing my medication I would keep, is that over the course of the disease, as I needed to increase my dosage, I increased it in small increments. Smaller, in fact, than the makers of the medicine manufactured it! I would cut my Sinemet pills into quarters when I need to increase my dosage. Why increase by 100% when 25% might work? I had concerns that the substance in the medication would not be evenly distributed, but what were my other options? To load up on more drugs than I needed? While I do not have concrete proof this has altered the course of my disease, trying to take the precise amount of medication I need seems only logical.

This focus on medication efficiency also has relevance in relationship to dyskinesia, which many PwPs would like to avoid if possible. My understanding about the relationship of Sinemet and dyskinesia is that it’s not a cause and effect relationship, but they are connected. Being on medication for longer and at higher doses, makes you more likely to develop it, so only taking the amount of medication you need to move well, seems like a smart thing to do.

In fact, this focus on medication efficiency helped me eliminate my dyskinesia a few years ago. You can see the difference in this video:

What happened is that I had gone on a new drug called Rytary for about a year when I began to develop a large amount of dyskinesia. I reasoned that Rytary was the culprit because it had been the only change I had made in my drug regimen, so I asked my doctor if I could go back on Sinemet. She said sure, and then made the intelligent suggestion to taper off my drug dosage in the afternoon because artificial dopamine tends to build up over the course of the day. This meant that I would take half a Sinemet for my last dose. We made this adjustment and my dyskinesia decreased by about 90%.

My friend, Dr. Cote, a prominent neurologist from Columbia Medical Center, talks about how the dopaminergic system is both incredibly complex and incredibly sensitive. This makes it difficult for scientists to understand the system, and design drugs that emulate it. The result is that the drugs we take function in a gross manner, and have variable effects across PwPs. This makes our analysis of how our drugs are affecting our own bodies more important, because our feedback plays an outsized role in helping our doctors find the right combination and dosage of medication for us.

Three:
Being a good patient

Throughout my time with PD I have done my best to be very specific and detailed with my descriptions of how I am doing to my doctor. I also listen to her advice, and question what doesn’t make sense to me. This has allowed us to build a collaborative relationship overtime. Every patient needs to view their relationship with their doctor as one of collaboration.  If your doctor isn’t willing to do that, look elsewhere.

So those are some practices I would keep…

 Things I Would Do Differently

One:
Strike a better balance between
physical challenge and safety

One behavior I regret is not finding the right balance between physical challenge and personal safety. My love of moving combined with a cavalier attitude towards my limitations has caused me to permanently injure my elbow and my wrist. I will not have normal use of them for the rest of my life.  If I had been sufficiently observant, I might have avoided these two breaks. Denial and ego worked together to blind me in a major way.

Two:
not wait as long
to go on Sinemet  

If I could go back in time, I would go on this drug sooner than I did.  It’s an amazing drug, and it allows us to exercise well, which is the only known measure we have to slow the progression of the disease.  And if you manage Sinemet with sensitivity and a willingness to endure some of the difficulty of being in an off phase, then taking the drug earlier is well worth the potential downside that may accompany it. I missed out on doing some activities with my kids because I was too embarrassed by my physical state to try to participate.

Three:
Not put off experiences
I was saving for retirement

You will never be as good as you are this very moment. Seize the opportunity! Take that rafting trip you’ve always dreamt about. Don’t put things off. Do them while you can. Travel. Live your life!

Four:
Not wait as long
to go public with my pd

When I was first diagnosed. I was reticent to share my diagnosis. I didn’t tell anyone (except my husband).  This kept me isolated and very alone as I processed this new reality.  If I had to do it over, I would have shortened my time in telling people my news. I could have developed friendships sooner. I wouldn’t have been so alone in dealing with the trauma of the diagnosis.

…So these are my main achievements and my regrets.  I hope you can benefit from my successes and my mistakes to build a life with PD you find exciting. Good luck! I will be rooting for you!