







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.
Last month marked the 7th anniversary of my official “you have Parkinson’s Disease” diagnosis from my first neurologist. During the past 7 years I’ve become very knowledgeable about PD, discovered tennis, turned into an exercise junkie to help slow the progression of my PD, and moved to Florida.
Meanwhile, after 200 + years Levadopa/Carbidopa, discovered 50 years ago, continues to be the main treatment for the symptoms of PD. A lot of research has been done trying to identify the cause of PD and a number of new medications have been developed to deal with the symptoms of PD but the cure remains elusive. The recent book “Ending Parkinson’s Disease” pointed out that PD is fast becoming pandemic and action needs to be taken to end PD. You can read my blog post about the book here.
Inspired by the book and it’s proposed PACT (Prevent,Advocate, Care, Treat) a worldwide group of PD advocates have formed PD Avengers to advocate for ending Parkinson’s. They want to unite 50 million voices world wide to prove PD matters and to build a sense of urgency to end Parkinson’s. I have added my voice and have become a PD Avenger and I hope you will too! You can find out more information and add your voice at PDAdvengers.com. Together we can END PARKINSON’S!!
Last month marked the 7th anniversary of my official “you have Parkinson’s Disease” diagnosis from my first neurologist. During the past 7 years I’ve become very knowledgeable about PD, discovered tennis, turned into an exercise junkie to help slow the progression of my PD, and moved to Florida.
Meanwhile, after 200 + years Levadopa/Carbidopa, discovered 50 years ago, continues to be the main treatment for the symptoms of PD. A lot of research has been done trying to identify the cause of PD and a number of new medications have been developed to deal with the symptoms of PD but the cure remains elusive. The recent book “Ending Parkinson’s Disease” pointed out that PD is fast becoming pandemic and action needs to be taken to end PD. You can read my blog post about the book here.
Inspired by the book and it’s proposed PACT (Prevent,Advocate, Care, Treat) a worldwide group of PD advocates have formed PD Avengers to advocate for ending Parkinson’s. They want to unite 50 million voices world wide to prove PD matters and to build a sense of urgency to end Parkinson’s. I have added my voice and have become a PD Avenger and I hope you will too! You can find out more information and add your voice at PDAdvengers.com. Together we can END PARKINSON’S!!
Last month marked the 7th anniversary of my official “you have Parkinson’s Disease” diagnosis from my first neurologist. During the past 7 years I’ve become very knowledgeable about PD, discovered tennis, turned into an exercise junkie to help slow the progression of my PD, and moved to Florida.
Meanwhile, after 200 + years Levadopa/Carbidopa, discovered 50 years ago, continues to be the main treatment for the symptoms of PD. A lot of research has been done trying to identify the cause of PD and a number of new medications have been developed to deal with the symptoms of PD but the cure remains elusive. The recent book “Ending Parkinson’s Disease” pointed out that PD is fast becoming pandemic and action needs to be taken to end PD. You can read my blog post about the book here.
Inspired by the book and it’s proposed PACT (Prevent,Advocate, Care, Treat) a worldwide group of PD advocates have formed PD Avengers to advocate for ending Parkinson’s. They want to unite 50 million voices world wide to prove PD matters and to build a sense of urgency to end Parkinson’s. I have added my voice and have become a PD Avenger and I hope you will too! You can find out more information and add your voice at PDAdvengers.com. Together we can END PARKINSON’S!!

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