A note from the blogger:
While I should have publish this post in July, a shorter version (and probably a better one), was published on the Parkinson's Foundation website. You may be thinking, "Hey, did he just tell me not to read this post?" The short answer is no. The longer answer is, if you already read the article on the Parkinsons Foundation website and you would like to take a deeper dive, please read the blog post below.
Prologue:
Kate’s family has a weekend place in Treadwell NY, near Oneonta. It is off a dirt road on 16 acres of land with a private pond for swimming. The entire family calls it the “Country House.” If you stay for more than 3 days, the world seems to slow down, and if you let it, a wonderful sense of calm will overtake you.
When in Treadwell, Ocean and I often throw rocks in the stream and make wishes. The word most often used to describe Ocean is “kind.” That shows in wishes he makes. He has, on a few occasions told other wishers to “think bigger.” in the Fall of 2019, we were at the stream and Ocean lobbed in a stone and said, “I hope that my cousins and I always come to the Country House.” I tossed in a stone and said, “May our family stay healthy and happy.” Ocean picked up 2 big handfuls of rocks, tossed them in the stream, and wished for, “A cure for Parkinson’s disease.”
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| Ocean In Treadwell Editing One Of His Horror Films |
Introduction:
It’s been a while since I last published a post. I have been in a clinical study which has taken up the majority of what little free time that I have. I have also been working on a short video based on my experience with the working title: “This Is What Hope Looks Like.” I recorded a video each time I had a clinical study visit. My plan is to edit these short clips together and maybe add some videos of doctors and researchers talking about Parkinson’s disease and the importance of advocating for additional research and taking part in clinical studies.
Timeline:
- February 5, notified of selection for clinical trial
- February 11, first clinical trial study site visit
- May 6, I am finally randomized and received the pump with either the medication or a placebo
- June 4, after almost one month of wearing the pump, things change for the better
- June 28, most recent study site visit
- Week of July 26, last visit for the phase III double blind study and first site visit for the open label phase
The Waiting Is The Hardest Part…
The first thing that you will probably notice from the timeline above is that it took almost 4 months between my first site visit and receiving the medication or placebo. This is one of the many reasons for attrition in clinical studies. Try to imagine going to a clinical study site over 16 times prior to receiving the medication or placebo. I must admit that the pharmaceutical company made it very easy. They sent car service to pick me up and take me home on every clinical study visit. While it was certainly nice to be chauffeured around, I still spent roughly 32 hours of travel time prior to even getting the medication. This does not include the 1 to 5 hours I spent at the clinical study site each week.
What They Did At The Site:
At several visits they took blood samples and from what I can recall, they did an EKG at every visit. Each time I went to the site, they went through the UPDRS which is an instrument used to determine where I was on the Parkinson’s disease scale. At each and every visit, the site team administered the Suicidal Ideation Attributes Scale (SIDAS). (What does the D stand for?) This is a testing instrument, administered by a doctor or a researcher, in which the participant is asked in many different questions if they are planning to kill themselves or if they have ever tried to kill themselves. After I took it about 10 times, I started to think of smart-ass replies in my mind. Some of the things I thought to myself were: “Why does my life seem that bad to you?” “Are you trying to give me ideas?” and “Well, maybe if this treatment doesn’t work…” After I received the medication (or placebo) and the pump, they also collected the unused medication as well as the used cannulas and syringes, which I kept in a sharps container.
Once I Received The Pump, I Followed The Following Study Protocol
Daily:
- Change battery
- Fill new syringe with medication, or placebo from the vial
- Change syringe
- Take carbidopa/levodopa or placebo at the same times each day that I took my regular medication
Every Three Days:
How My Progress Was Measured:
- I kept a daily electronic diary with information on changing the infusion site for the cannula, the times that I took the medication or placebo, a record of on and off times, and if and/or when I took the emergency carbidopa/levodopa (I never did)
- A, PKG-Watch
- Study site observations
- UPDRS results
- Counting the unused medication
- Counting the used syringes and infusion kits
The pump is heavy and fairly large. At 7.5” x 4.5”, It is over twice the size of the pumps used by people with diabetes. The results, at least in my case, were definitely worth the effort.
Results:
I knew that I was definitely feeling better and that there was a good chance that I was receiving real medication and not the placebo. When I watched the video taken on May 6 (first day I started to use the pump) and compared it to the one that was taken on June 4, the changes were obvious. The first thing that I noticed was that my dyskinesias had all but vanished. In addition, my tremor was not as severe and friends and family who saw the videos commented that my voice seemed to be stronger.
Before I started using the pump, my medication was not working more than half of the time (8.5 hours daily). These times are referred to as, “off periods.” After I began using the pump, my off periods were down to 2 hours a day! Not only that, during my off periods, my symptoms were much less severe. Prior to using the pump, I was often dragging my right leg and now, during my off periods, I have a slight limp. In addition, I suffer from fatigue much less often.
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| Modeling My Pump |
Predictions of Things To Come:
If other study participants achieved the same results that I did, this treatment will be a game changer. It could potentially change the way that Parkinson’s disease symptoms are treated. Depending on how long it takes to get the product market, we may see many people wearing pumps at the 2022 World Parkinson Congress in Barcelona.
Hopefully, if the treatment is successful, the pharmaceutical company will manufactured smaller pumps. The technology is already out there. It may be possible, for example, to adapt one of the already existing pumps used to treat diabetes. These pumps are much smaller and far easier to use. Over 10 million people worldwide suffer from Parkinson’s disease and in the United States alone, 60,000 people are diagnosed annually. This treatment, therefore, could potentially improve the lives of millions of people.
Closing Thoughts:
In late July/early August I will be in the open label phase of the clinical trial. This means that for the next two years, I will receive the medication, the pump and supplies for free! It also means, that my trips to the clinical study site will be limited to once a month.
I feel extremely lucky to be one of 130 people worldwide who were selected for this study. I am grateful to the doctors and researchers at the clinical study site and the pharmaceutical company. I am aware that it takes millions of dollars to bring a drug to a clinical trial and in many cases, the treatment fails and never reaches the marketplace. I am grateful to have a job at the City University of New York (CUNY). Working at CUNY allowed me to save up and use the many sick days that were necessary to participate in this study. I am grateful for the support provided by colleagues, friends and family members. Most of all, I am grateful for the love and support provided by my wife Kate and our son Ocean.
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| Ocean's Elementary School Graduation |
Some people have asked me, “If the treatment did not work, would you still be willing to take part in another clinical study?” The answer is yes. I would still do it in hopes of playing a very small part in testing a treatment that could help myself and others. Every time a treatment option fails, the Parkinson’s disease community takes one step closer to finding one that will work and ultimately, a cure. If you have the time and the desire to help yourself and others, I strongly recommend getting involved in a clinical study.
Epilogue, Fourth of July weekend 2021:
Ocean and I are back at the stream in Treadwell. Ocean tossed in a stone into the stream and said,
“I hope that many people will be able to get the Parkinson’s pump so that they can feel better too!”
Thanks for reading...
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| Pond At The Country House |
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| Wild Flowers, Treadwell, NY |
