







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.
I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team. One of his guiding coaching philosophy’s came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.” Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s. For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January. You can read about my visit here.
Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.” Their motto is ‘Discover the Benefit of Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team” In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.
Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.
And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights. All of the ‘Our Team’ members need and deserve our thanks and support.
As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills. I suppose they are measuring that cadence right now 🙂 I will get the results at the end of the 90 day test period. I definitely notice problems with my fine motor skills so will be interested to see what they discover.
Last week was support group week and we attended both groups. The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc. The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients. The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance. I had read about the program but was not aware it was offered locally. Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.
I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team. One of his guiding coaching philosophy’s came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.” Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s. For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January. You can read about my visit here.
Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.” Their motto is ‘Discover the Benefit of Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team” In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.
Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.
And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights. All of the ‘Our Team’ members need and deserve our thanks and support.
As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills. I suppose they are measuring that cadence right now 🙂 I will get the results at the end of the 90 day test period. I definitely notice problems with my fine motor skills so will be interested to see what they discover.
Last week was support group week and we attended both groups. The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc. The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients. The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance. I had read about the program but was not aware it was offered locally. Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.
I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team. One of his guiding coaching philosophy’s came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.” Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s. For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January. You can read about my visit here.
Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.” Their motto is ‘Discover the Benefit of Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team” In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.
Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.
And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights. All of the ‘Our Team’ members need and deserve our thanks and support.
As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills. I suppose they are measuring that cadence right now 🙂 I will get the results at the end of the 90 day test period. I definitely notice problems with my fine motor skills so will be interested to see what they discover.
Last week was support group week and we attended both groups. The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc. The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients. The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance. I had read about the program but was not aware it was offered locally. Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.