







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.
Below, in no particular order, is a list of Parkinson’s Disease blogs that I follow grouped by general headings. By no means is this a complete list of PD blogs, I find more all the time, so I will update this list occasionally with new sites. As far as I know, all of these blogs are active as of February, 2020. Updates marked with (new).
Parkinson’s Today Blog (National Parkinson Foundation)
Fox Feed (Michael J Fox Foundation)
The Cure Parkinson’s Trust (UK)
Parkinson’s Disease Foundation
Brian Grant Foundation Blog
Davis Phinney Foundation
Parkinson’s UK on Medium (new)
Parkinson’s Secrets by Dr Michael Okun
University of Florida Center for Movement Disorders
Patients Like Me a online support group
Jon Palfremans Blog from The Journal of Parkinson’s Disease.
Unshakeable MD by Dr. Soania Mathur (NEW)
Designing A Cure Dr. Mathur’s personal blog
Both Sides Now From Parkinson’s Researcher to Parkinson’s Patient by Dr. Alice Lazzarini
Defeat Parkinson’s by Dr. DeLong
Yoga Dopa by Kaitlyn Roland PhD, a yogini with a passion to help people live well with PD
Science of Parkinson’s by Simon Stott, PD researcher
The Parkinson’s Report by Hannah Grassie
The Tomorrow Edition by Ben Stetcher, a great site with interviews with leading PD researchers
Tremors in the Universe by Robert Baittie
Hiyaitsfiona.Blog by Fiona Purchase of Scotland. Her husband Martin has Parkinson’s
PD Gladiators Combating Parkinson’s Disease With Vigorous Exercise
Off and On by Peter Dunlap-Shohl who is also a great cartoonist and writes for the
North West Parkinsons Foundation
Shake Rattle & Roll An insider’s view of Parkinson’s Disease and DBS by Kate Kelsall
Shaky Paws Grampa Parkinson’s Resources from A Patient Perspective by Kirk Hall
PD Plan 4 Life by Jean Burns and Sheryl Jedlinski who both have PD
Living Well with Parkinson’s Disease also by Sheryl Jedlinski
Stepping Forward Life with Young Onset Parkinson’s Disease by Byron Roberts
Chronicles Of A Dystonia Muse by Pamela
Studio Foxhoven The Art and Writing of Terri Reinhart, a PD patient
I’ve Got the Hippy Shakes by Howard Moore blogging about PD, Music and more
The Perky Parkie by Allison Smith
Parkinson’s Humor by Yuma Bev
A Soft Voice in a Noisy World Dealing and healing with Parkinson’s Disease by Karl Robb
The PD Gardener
Parkinson’s Journey..You Are Not Alone by Sheryl Woodbridge
444 Parkinson’s Traveler by Marcus Cranston MD
Twitchy Woman by Sharon Krischer
One Voice by Dr Jon Stamford
Isreal Robledo by Isreal Robledo
The Crooked Path by Corey King
Journey with Parkinson’s by Prof. Frank Church
These sites provide a daily or weekly list of news items about Parkinson’s Disease
Parkinson’s News Today (new)
Below, in no particular order, is a list of Parkinson’s Disease blogs that I follow grouped by general headings. By no means is this a complete list of PD blogs, I find more all the time, so I will update this list occasionally with new sites. As far as I know, all of these blogs are active as of February, 2020. Updates marked with (new).
Parkinson’s Today Blog (National Parkinson Foundation)
Fox Feed (Michael J Fox Foundation)
The Cure Parkinson’s Trust (UK)
Parkinson’s Disease Foundation
Brian Grant Foundation Blog
Davis Phinney Foundation
Parkinson’s UK on Medium (new)
Parkinson’s Secrets by Dr Michael Okun
University of Florida Center for Movement Disorders
Patients Like Me a online support group
Jon Palfremans Blog from The Journal of Parkinson’s Disease.
Unshakeable MD by Dr. Soania Mathur (NEW)
Designing A Cure Dr. Mathur’s personal blog
Both Sides Now From Parkinson’s Researcher to Parkinson’s Patient by Dr. Alice Lazzarini
Defeat Parkinson’s by Dr. DeLong
Yoga Dopa by Kaitlyn Roland PhD, a yogini with a passion to help people live well with PD
Science of Parkinson’s by Simon Stott, PD researcher
The Parkinson’s Report by Hannah Grassie
The Tomorrow Edition by Ben Stetcher, a great site with interviews with leading PD researchers
Tremors in the Universe by Robert Baittie
Hiyaitsfiona.Blog by Fiona Purchase of Scotland. Her husband Martin has Parkinson’s
PD Gladiators Combating Parkinson’s Disease With Vigorous Exercise
Off and On by Peter Dunlap-Shohl who is also a great cartoonist and writes for the
North West Parkinsons Foundation
Shake Rattle & Roll An insider’s view of Parkinson’s Disease and DBS by Kate Kelsall
Shaky Paws Grampa Parkinson’s Resources from A Patient Perspective by Kirk Hall
PD Plan 4 Life by Jean Burns and Sheryl Jedlinski who both have PD
Living Well with Parkinson’s Disease also by Sheryl Jedlinski
Stepping Forward Life with Young Onset Parkinson’s Disease by Byron Roberts
Chronicles Of A Dystonia Muse by Pamela
Studio Foxhoven The Art and Writing of Terri Reinhart, a PD patient
I’ve Got the Hippy Shakes by Howard Moore blogging about PD, Music and more
The Perky Parkie by Allison Smith
Parkinson’s Humor by Yuma Bev
A Soft Voice in a Noisy World Dealing and healing with Parkinson’s Disease by Karl Robb
The PD Gardener
Parkinson’s Journey..You Are Not Alone by Sheryl Woodbridge
444 Parkinson’s Traveler by Marcus Cranston MD
Twitchy Woman by Sharon Krischer
One Voice by Dr Jon Stamford
Isreal Robledo by Isreal Robledo
The Crooked Path by Corey King
Journey with Parkinson’s by Prof. Frank Church
These sites provide a daily or weekly list of news items about Parkinson’s Disease
Parkinson’s News Today (new)
Below, in no particular order, is a list of Parkinson’s Disease blogs that I follow grouped by general headings. By no means is this a complete list of PD blogs, I find more all the time, so I will update this list occasionally with new sites. As far as I know, all of these blogs are active as of February, 2020. Updates marked with (new).
Parkinson’s Today Blog (National Parkinson Foundation)
Fox Feed (Michael J Fox Foundation)
The Cure Parkinson’s Trust (UK)
Parkinson’s Disease Foundation
Brian Grant Foundation Blog
Davis Phinney Foundation
Parkinson’s UK on Medium (new)
Parkinson’s Secrets by Dr Michael Okun
University of Florida Center for Movement Disorders
Patients Like Me a online support group
Jon Palfremans Blog from The Journal of Parkinson’s Disease.
Unshakeable MD by Dr. Soania Mathur (NEW)
Designing A Cure Dr. Mathur’s personal blog
Both Sides Now From Parkinson’s Researcher to Parkinson’s Patient by Dr. Alice Lazzarini
Defeat Parkinson’s by Dr. DeLong
Yoga Dopa by Kaitlyn Roland PhD, a yogini with a passion to help people live well with PD
Science of Parkinson’s by Simon Stott, PD researcher
The Parkinson’s Report by Hannah Grassie
The Tomorrow Edition by Ben Stetcher, a great site with interviews with leading PD researchers
Tremors in the Universe by Robert Baittie
Hiyaitsfiona.Blog by Fiona Purchase of Scotland. Her husband Martin has Parkinson’s
PD Gladiators Combating Parkinson’s Disease With Vigorous Exercise
Off and On by Peter Dunlap-Shohl who is also a great cartoonist and writes for the
North West Parkinsons Foundation
Shake Rattle & Roll An insider’s view of Parkinson’s Disease and DBS by Kate Kelsall
Shaky Paws Grampa Parkinson’s Resources from A Patient Perspective by Kirk Hall
PD Plan 4 Life by Jean Burns and Sheryl Jedlinski who both have PD
Living Well with Parkinson’s Disease also by Sheryl Jedlinski
Stepping Forward Life with Young Onset Parkinson’s Disease by Byron Roberts
Chronicles Of A Dystonia Muse by Pamela
Studio Foxhoven The Art and Writing of Terri Reinhart, a PD patient
I’ve Got the Hippy Shakes by Howard Moore blogging about PD, Music and more
The Perky Parkie by Allison Smith
Parkinson’s Humor by Yuma Bev
A Soft Voice in a Noisy World Dealing and healing with Parkinson’s Disease by Karl Robb
The PD Gardener
Parkinson’s Journey..You Are Not Alone by Sheryl Woodbridge
444 Parkinson’s Traveler by Marcus Cranston MD
Twitchy Woman by Sharon Krischer
One Voice by Dr Jon Stamford
Isreal Robledo by Isreal Robledo
The Crooked Path by Corey King
Journey with Parkinson’s by Prof. Frank Church
These sites provide a daily or weekly list of news items about Parkinson’s Disease
Parkinson’s News Today (new)