The answer is truly in all of us, working together. International collaboration is essential for speeding a cure for the 5 million Parkinson’s patients worldwide.
— Michael J. Fox
You may ask why you should participate in Clinical Trials for Parkinson’s Disease. After all, aren’t they always drug trials? You say you don’t want to be a guinea pig for a pharmaceutical company. Well, the good news is, not all clinical trials involve drugs. The bad news is that many researchers cannot complete their studies because not enough people participate in them.
Since being diagnosed 10 years ago, I have participated in a number of studies. Some of them on-line, some by telephone, and others in person. Many provide some form of compensation. One study was a long-term study though the Alzheimer’s Center at UCLA which recruited people with Neurological disorders to look at cognitive differences. Three years in a row, I was given a 3 hour cognitive test by graduate students, doing tasks such as recalling as many items as possible from a list of 20 words – our brains usually can process a string of 7 items, which is why your phone number is 7 numbers. Anything over 7 can be difficult to retrieve. Other tasks included looking at shapes and being asked to replicate them from memory, repeating paragraphs that are read to you, counting, etc. Unfortunately this study was discontinued due to lack of funding.
This past week I went to USC – University of Southern California (I had to give the other LA university equal time), to work with Dr. Giselle Petzinger, whose research focuses on the effects of exercise on Parkinson’s. This time, she is looking at the association between fitness and cognitive performance in Parkinson’s Disease. She wants to see which PwP’s are doing well cognitively and if there is a correlation with the types of exercise they are doing. This is an 18 month study that involves 3 visits to USC and using wearable devices for 1-week every 3 months. I was number 15 in the study. She needs 35 more people to complete the study, but recruitment is going very slowly.
The first day included a 3 hour cognitive assessment! I remembered a lot of the exercises from the tests at UCLA. I think everyone uses the same resources for measing cognitive ablility. Day 2 began with a brain MRI. Then the fun began. I was escorted to a lab where I got to try out Virtual Reality. After putting some sensors on my arms and legs, I put on the VR headset, excited to check it out. I was in a waiting room of some sort, with all kinds of video games on the shelves. The 360 view was amazing as I turned my head. But no, that wasn’t for me to use. Instead I was to walk down a long hallway (I did this on a treadmill) stepping over obstacles of 2 different heights. Then I had to do it over and over, each time with different instructions.
Day 3 was even more interesting.
I repeated the task from Day 2 two more times and then I spent the next half hour getting even more sensors for my last walk on the treadmill. Have you ever seen how CGI (Computer Generated Imagery) is done to animate a computer designed animal? That is what I looked like. Mr. Twitchy says I looked like a Christmas tree! This last task was to look at gait and balance. The treadmill has two separate treads that you walk on. While I was walking at a fairly quick pace, one of the treadmills would slow down or speed up with no warning. My job was to keep my balance. I was tethered by a harness so that I would not fall. After more gait and balance tests I was sent home with my wearables (watch and heart monitor). I am looking forward to seeing the results of this trial.
How do you find a study that works for you? You can start with Fox Trial Finder. It is easy to register, and you will receive notices of trials that you qualify for. The Parkinson’s Foundation has been following over 12,000 people in 5 countries with the Parkinson’s Outcomes Project. Check it out to see if you can participate. Ask your Movement Disorders Specialist or Neurologist if they know of any trials near you. Ask your PD friends if they know of anything. If you are interested in the USC trial, contact me at firstname.lastname@example.org and I will forward your info to Dr. Petzinger.
April is Parkinson’s Awareness Month. My challenge to you for April is to find a way to get involved in research. You can make a difference in your life and the lives of others. Think about it. But not too long. As the Nike ads say “Just Do It“