







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.


OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!
Here’s what’s happened in our world since my last post:
We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!
I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!
We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.
Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.
If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.
I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.
“It does not matter how slowly you go as long as you do not stop.” – Confucius


OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!
Here’s what’s happened in our world since my last post:
We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!
I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!
We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.
Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.
If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.
I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.
“It does not matter how slowly you go as long as you do not stop.” – Confucius


OK maybe a belated wish but a sincere one none the less, for indeed it is a New Year and for most (if not all) of us, the only double digit (2020) year we will see. So I hope your holidays were joyous and that your new year has started out right!
Here’s what’s happened in our world since my last post:
We finished the holiday season attending various events with friends including riding the Sarasota trolley to view Christmas lights, catching a Christmas concert by the ‘living’ Christmas tree at a local church, attending a Mo-Town Christmas celebration, catching a play at the Florida Studio Theater, and hosting brunch for a few friends on Christmas day. And then, we bought a new car and finished the year by watching the last sunset over the gulf for 2019 on New Years Eve. Whew!!
I started the new year out with a visit to my neurologist where I was awarded a gold star for the best patient of the day! Well at least as of 10am that morning anyway. He was happy with my lack of progression, my continued efforts to exercise daily and he was OK with my efforts to finally get my Parkinson’s drugs working with minimal off time. He even suggested cancelling my next appointment and going to once every 6 months. So, for us PwPs it was a great visit, he didn’t change or add medications, was happy with my finger tapping, getting out of the chair and walking and I got a pat on the back and a “keep doing what you are doing” . Perfect!!
We have continued to keep up with tennis most everyday and I am cycling 3 days a week now that our cycling coach is also conducting two classes a week at a second location. According to my FitBit I am averaging about 6-7 hours of exercise per week with 3 hours high intensity (cycling) and 3 – 4 hours of doubles tennis at a medium level.
Speaking of cycling, I have been working on a website about the Pedaling for Parkinson’s classes in the Sarasota area and the benefits of exercise for PwP’s. Click here to view the site SRQ Pedals to Fight PD. We will also use the website for class members and cycling coaches who want to download recorded audio of some of our rides to listen to when they are unable to attend class, traveling, etc.
If you haven’t read Simon Stott’s year end review of 2019 on his Science of Parkinson’s Blog, I highly recommend you take a look at it. Sometimes we feel like nothing new is happening in PD research but you will find that a lot of exciting research is going on. You can read it here and you can read his post on what’s on the horizon for 2020 here.
I recently signed up for PD School 2020 by Dr Laurie Mischley and had planned to write about it in this post, but this post is long enough and I think it deserves a post of it’s own. Yes that means I might have two posts in one week!! Stay tuned and see if it happens.
“It does not matter how slowly you go as long as you do not stop.” – Confucius