







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.
While it is definitely a center for the practice of yoga, the key statement is in bold above, “…teaching skills for optimal living for the whole person…” As you will see throughout this series of posts, we learned much more than the benefit of yoga during our retreat.
One of the best things we learned during our retreat was we are not alone in dealing with Parkinson’s. There were about 70 attendees and we and the instructors quickly bonded as a group even though we had never met before and each of us had different symptoms and different issues to deal with. We left with a strong sense of community, a 5 page list of email addresses and phone numbers for staying in touch and lots of good information and ideas for dealing with Parkinson’s.
Without a doubt this was the best gift we could have given ourselves at this time in our lives. I can’t say enough good things about our experience but I’ll try in the next post 🙂
While it is definitely a center for the practice of yoga, the key statement is in bold above, “…teaching skills for optimal living for the whole person…” As you will see throughout this series of posts, we learned much more than the benefit of yoga during our retreat.
One of the best things we learned during our retreat was we are not alone in dealing with Parkinson’s. There were about 70 attendees and we and the instructors quickly bonded as a group even though we had never met before and each of us had different symptoms and different issues to deal with. We left with a strong sense of community, a 5 page list of email addresses and phone numbers for staying in touch and lots of good information and ideas for dealing with Parkinson’s.
Without a doubt this was the best gift we could have given ourselves at this time in our lives. I can’t say enough good things about our experience but I’ll try in the next post 🙂
While it is definitely a center for the practice of yoga, the key statement is in bold above, “…teaching skills for optimal living for the whole person…” As you will see throughout this series of posts, we learned much more than the benefit of yoga during our retreat.
One of the best things we learned during our retreat was we are not alone in dealing with Parkinson’s. There were about 70 attendees and we and the instructors quickly bonded as a group even though we had never met before and each of us had different symptoms and different issues to deal with. We left with a strong sense of community, a 5 page list of email addresses and phone numbers for staying in touch and lots of good information and ideas for dealing with Parkinson’s.
Without a doubt this was the best gift we could have given ourselves at this time in our lives. I can’t say enough good things about our experience but I’ll try in the next post 🙂
The National Parkinson’s Foundation has developed an app for those with Parkinson’s, their caregivers, and anyone wanting more information about the disease. It was recently reviewed by appPicker and the review can be read here. The app is available for Android and IOS and is free. Check it out if you get a chance.