







Yep, May 4th – 8th is Clinical Trial Awareness Week, and you know how I feel about clinical trials! I have to admit, two years ago I would have said “it’s what week” but then I received the ‘Diagnosis’ and now I am an advocate for clinical trial participation and for the need to bring the patient to the table with the researcher so all of our needs are met. Amazing how life changes isn’t it?
Regular readers are aware that almost every post, no matter the topic, includes a push for you to sign up for the Fox Trial Finder. But then what? You say “OK Tom” and you sign up and you get your first list of trials that match your information and you are excited to find the perfect match that will lead to the cure! But…if you are like me, you discover that you don’t qualify for your first choice because you are already taking Sinemet or Mirapex or some other PD drug. Oh and that is the same problem with your second choice too!
Oh look, a soap box….
I have written about this problem before and it was discussed it at the Rally for the Challenge last year in Grand Rapids and we have discussed it with other PwP’s but we haven’t found an answer to this problem. I may be wrong, but I believe that this issue is a major reason PD researchers can’t recruit enough trial participants. Most of the people I have talked to were diagnosed by completing the toe-heel tapping, finger tapping, nose touching etc. tests AND then, to make sure, prescribed a dopamine replacement drug. Presto, no longer eligible for many trials, at least while in the early progression of PD.
I realize that part of the reason for not taking volunteers who are already medicated is the need to make sure it is the tested drug that produces the expected improvement, not the combination of two or more drugs. But, what if the combination produces a better result? Already many of us take two or more drugs to treat all of our symptoms and improve our quality of life. So here’s my idea..
Why not include some already medicated volunteers in the study design? For example, if you need 400 subjects for Phase III, how about 300 who aren’t taking a dopamine replacement drug (if you can find them) and 50 taking Sinement and 50 taking Mirapex? It might require some tweaking of the dosage of the drugs but you have another 100 participants in your trial. Just a thought, we need clinical trials and they need volunteers, so it’s time to stop saying ‘That’s the way we have always done it” and time to be innovative and try something new.
…..OK, off the soapbox.


We arrived early to help with the setup for the walk and I was glad my stepson, Darrin, joined us for the heavy lifting! This was also our first ‘gig’ as Fox Trial Finder Ambassadors and we set up a table to promote Fox Trial Finder and Fox InSight. We had a lot of activity at our table, handed out a lot of information and MJFF orange brain shaped stress relievers. We met a lot of new people who were interested in both programs and hopefully our efforts result in some new sign ups.
We were asked to speak during the prerace ceremonies so, in addition to our first Trial Finder gig, I made my first presentation about current research and the need for participating in Fox Trial Finder and Fox InSight. I had prepared some notes (about 7 pages when printed in large type!) but found it hard to read the notes, maintain some eye contact, speak loudly AND hold the microphone at the same time so it was more of an ‘off the cuff’ speech it but it seemed to go OK for a first attempt.

We are on our third week of hanging at the beach in Siesta Key, FL We were scheduled to leave on March 1 but decided to add one more week. We had to change units but the move was easy and we get another week away from the cold weather predicted again for Eastern Tennessee.
While we are here we have met up with Judy and Fred Metz, old high school friends of Mara’s for a nice meal and a walk on the beach. They recently relocated to the area from Washington DC and live in a lovely home on Sarasota Bay.


After the Rookery, we paid a visit to Olaf’s ice cream shop in SiestaKey Village. Yum!
The warm weather has been great, allowing us to get out more and we have upped our exercise to at least 1.5 hours a day, primarily walking along the beach and doing Tai Chi which we both enjoy, in fact we ordered the next DVD so we can expand our practice. We have been averaging 4 – 5 miles per day walking on the beach, plus walking to our favorite restaurant, Captain Curt’s, for a spot of their world famous clam chowder for lunch! I have definitely noticed improvement in my walking and balance with the warm weather and increased exercise.
We also have started doing Yoga using Introduction to Yoga and Meditation, a DVD by one of our instructors from Kripalu, Megha-Nancy Buttenheim. The meditation instruction is great and the yoga practice is challenging for my stiff limbs 🙂
In between all of the exercising, I’ve found time to complete more of my genetics course, enjoy many a beautiful sunset, catch up on my magazines, read a few books, and enjoy the beach. We have rented a cabana chair for the week and we spend a few hours each day out on the beach reading, soaking up the Vitamin D and people watching. Oh and I finally found time to complete a blog post!!
We head home Saturday and hope that spring arrives at the same time 🙂
Until next time, I end with one of my favorite quotes by Virginia Satir- “Life is not the way it’s supposed to be.. It’s the way it is.. The way we cope with it, is what makes the difference.”

We are on our third week of hanging at the beach in Siesta Key, FL We were scheduled to leave on March 1 but decided to add one more week. We had to change units but the move was easy and we get another week away from the cold weather predicted again for Eastern Tennessee.
While we are here we have met up with Judy and Fred Metz, old high school friends of Mara’s for a nice meal and a walk on the beach. They recently relocated to the area from Washington DC and live in a lovely home on Sarasota Bay.


After the Rookery, we paid a visit to Olaf’s ice cream shop in SiestaKey Village. Yum!
The warm weather has been great, allowing us to get out more and we have upped our exercise to at least 1.5 hours a day, primarily walking along the beach and doing Tai Chi which we both enjoy, in fact we ordered the next DVD so we can expand our practice. We have been averaging 4 – 5 miles per day walking on the beach, plus walking to our favorite restaurant, Captain Curt’s, for a spot of their world famous clam chowder for lunch! I have definitely noticed improvement in my walking and balance with the warm weather and increased exercise.
We also have started doing Yoga using Introduction to Yoga and Meditation, a DVD by one of our instructors from Kripalu, Megha-Nancy Buttenheim. The meditation instruction is great and the yoga practice is challenging for my stiff limbs 🙂
In between all of the exercising, I’ve found time to complete more of my genetics course, enjoy many a beautiful sunset, catch up on my magazines, read a few books, and enjoy the beach. We have rented a cabana chair for the week and we spend a few hours each day out on the beach reading, soaking up the Vitamin D and people watching. Oh and I finally found time to complete a blog post!!
We head home Saturday and hope that spring arrives at the same time 🙂
Until next time, I end with one of my favorite quotes by Virginia Satir- “Life is not the way it’s supposed to be.. It’s the way it is.. The way we cope with it, is what makes the difference.”

We are on our third week of hanging at the beach in Siesta Key, FL We were scheduled to leave on March 1 but decided to add one more week. We had to change units but the move was easy and we get another week away from the cold weather predicted again for Eastern Tennessee.
While we are here we have met up with Judy and Fred Metz, old high school friends of Mara’s for a nice meal and a walk on the beach. They recently relocated to the area from Washington DC and live in a lovely home on Sarasota Bay.


After the Rookery, we paid a visit to Olaf’s ice cream shop in SiestaKey Village. Yum!
The warm weather has been great, allowing us to get out more and we have upped our exercise to at least 1.5 hours a day, primarily walking along the beach and doing Tai Chi which we both enjoy, in fact we ordered the next DVD so we can expand our practice. We have been averaging 4 – 5 miles per day walking on the beach, plus walking to our favorite restaurant, Captain Curt’s, for a spot of their world famous clam chowder for lunch! I have definitely noticed improvement in my walking and balance with the warm weather and increased exercise.
We also have started doing Yoga using Introduction to Yoga and Meditation, a DVD by one of our instructors from Kripalu, Megha-Nancy Buttenheim. The meditation instruction is great and the yoga practice is challenging for my stiff limbs 🙂
In between all of the exercising, I’ve found time to complete more of my genetics course, enjoy many a beautiful sunset, catch up on my magazines, read a few books, and enjoy the beach. We have rented a cabana chair for the week and we spend a few hours each day out on the beach reading, soaking up the Vitamin D and people watching. Oh and I finally found time to complete a blog post!!
We head home Saturday and hope that spring arrives at the same time 🙂
Until next time, I end with one of my favorite quotes by Virginia Satir- “Life is not the way it’s supposed to be.. It’s the way it is.. The way we cope with it, is what makes the difference.”