







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.
Happy Thanksgiving Holiday!
It is a busy time of year but I wanted send along good wishes for the holiday, pass along a reminder or two and note some items of interest in the Parkinson’s community.
Reminder number one: November is National Caregivers Month. Yes the month is about over but I know that you, like me, are thankful for your care partner(s) every day of the year. Remember there are lots of resources available for care partners and one of the best, available from the Parkinson’s Foundation, is the Caring and Coping guide, written for caregivers at every stage of PD. Download load a copy at this link.
Reminder number two: Tuesday the 28th is Giving Tuesday. This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched. For example the Michael J Fox Foundation is shooting to raise $1million in 1 day with every donation matched by anonymous donors. Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.
Item of interest number one: This article Neurological disorders – including Parkinson’s – are leading source of disability globally points out that PD is becoming pandemic and we must take action to find a cure. This summary is worth the few minutes it will take you to read.
Item of interest number two: The Michael J. Fox Foundation for Parkinson’s Research has launched Fox Insight — an online clinical study that empowers people with PD to partner with researchers and accelerate the development of breakthrough treatments. I have talked about Fox Insight in previous posts but, if you haven’t joined yet, now is the time, your data is needed as we work to find a cure. Click on the link above to get more information and join us.
Item of interest number three: The next World Parkinson’s Congress will be June, 2019 in Kyoto, Japan. Soaring With Hope has started a project to make origami cranes for an art installation to display at the WPC. Each crane represents a person withParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane. They have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it to help raise awareness and HOPE for PD globally. Please take a minute to click on this link and add your WORDS OF HOPE, and please spread the word to get others to join in and participate. Thanks to Sharon Krischer (blogging as Twitchy Woman) for providing this information on her blog.
On this Thanksgiving day I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my occasional posts. Thank you all and Happy Thanksgiving!
Happy Thanksgiving Holiday!
It is a busy time of year but I wanted send along good wishes for the holiday, pass along a reminder or two and note some items of interest in the Parkinson’s community.
Reminder number one: November is National Caregivers Month. Yes the month is about over but I know that you, like me, are thankful for your care partner(s) every day of the year. Remember there are lots of resources available for care partners and one of the best, available from the Parkinson’s Foundation, is the Caring and Coping guide, written for caregivers at every stage of PD. Download load a copy at this link.
Reminder number two: Tuesday the 28th is Giving Tuesday. This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched. For example the Michael J Fox Foundation is shooting to raise $1million in 1 day with every donation matched by anonymous donors. Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.
Item of interest number one: This article Neurological disorders – including Parkinson’s – are leading source of disability globally points out that PD is becoming pandemic and we must take action to find a cure. This summary is worth the few minutes it will take you to read.
Item of interest number two: The Michael J. Fox Foundation for Parkinson’s Research has launched Fox Insight — an online clinical study that empowers people with PD to partner with researchers and accelerate the development of breakthrough treatments. I have talked about Fox Insight in previous posts but, if you haven’t joined yet, now is the time, your data is needed as we work to find a cure. Click on the link above to get more information and join us.
Item of interest number three: The next World Parkinson’s Congress will be June, 2019 in Kyoto, Japan. Soaring With Hope has started a project to make origami cranes for an art installation to display at the WPC. Each crane represents a person withParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane. They have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it to help raise awareness and HOPE for PD globally. Please take a minute to click on this link and add your WORDS OF HOPE, and please spread the word to get others to join in and participate. Thanks to Sharon Krischer (blogging as Twitchy Woman) for providing this information on her blog.
On this Thanksgiving day I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my occasional posts. Thank you all and Happy Thanksgiving!
Happy Thanksgiving Holiday!
It is a busy time of year but I wanted send along good wishes for the holiday, pass along a reminder or two and note some items of interest in the Parkinson’s community.
Reminder number one: November is National Caregivers Month. Yes the month is about over but I know that you, like me, are thankful for your care partner(s) every day of the year. Remember there are lots of resources available for care partners and one of the best, available from the Parkinson’s Foundation, is the Caring and Coping guide, written for caregivers at every stage of PD. Download load a copy at this link.
Reminder number two: Tuesday the 28th is Giving Tuesday. This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched. For example the Michael J Fox Foundation is shooting to raise $1million in 1 day with every donation matched by anonymous donors. Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.
Item of interest number one: This article Neurological disorders – including Parkinson’s – are leading source of disability globally points out that PD is becoming pandemic and we must take action to find a cure. This summary is worth the few minutes it will take you to read.
Item of interest number two: The Michael J. Fox Foundation for Parkinson’s Research has launched Fox Insight — an online clinical study that empowers people with PD to partner with researchers and accelerate the development of breakthrough treatments. I have talked about Fox Insight in previous posts but, if you haven’t joined yet, now is the time, your data is needed as we work to find a cure. Click on the link above to get more information and join us.
Item of interest number three: The next World Parkinson’s Congress will be June, 2019 in Kyoto, Japan. Soaring With Hope has started a project to make origami cranes for an art installation to display at the WPC. Each crane represents a person withParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane. They have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it to help raise awareness and HOPE for PD globally. Please take a minute to click on this link and add your WORDS OF HOPE, and please spread the word to get others to join in and participate. Thanks to Sharon Krischer (blogging as Twitchy Woman) for providing this information on her blog.
On this Thanksgiving day I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my occasional posts. Thank you all and Happy Thanksgiving!
September has been a month of changes including:
We arrived in Sarasota at the end of August after loading a POD and preparing the house in Tennessee for the next owners. We arrived just in time for the Thursday Pedaling class and Saturday tennis matches and were already starting to get in the groove again. Then we received a call from our realtor saying our home in Tennessee was flooded due to a broken pipe!
So we quickly made plans to return to Tennessee to assess the damage, leaving a few days before Hurricane Irma was due, but not early enough to beat the traffic on I-75 North where we spent 9+ hours to go our usual 5-6 hour trip the first day and almost the same for the second day. We found the house to be almost a complete remodel with water damage through out both floors. We are now in between the dry out and removal of damaged walls, ceilings, etc. and getting the estimate for repair/rebuild approved by the insurance company. I have to say that our insurance company (USAA) was quick to get someone out to the home to start the demolition and dry out process and to find a contractor for the rebuild, so hopefully, everything progresses as smoothly.
While we were in Tennessee, Hurricane Irma swung by Sarasota preventing us from returning until the roads were open and gasoline was available. Our rental here survived Irma with no problems and some friends that had to evacuate their home were able to ride out the storm in our unit while making sure our hurricane shutters were up and everything that might fly around was in the garage.
Since our return we are back to trying to get in to the exercise routine, pedaling twice a week, tennis at least twice a week, yoga and dance once a week and try to squeeze in a walk most days too. As I noted in the previous post, we saw a definite decline in my mobility and stiffness during the summer without enough exercise and I am glad to be able to up the level a bit.
Also, since we returned, I moved this blog to a new hosting site and a new blogging platform (WordPress). As a result I am slowly working through the site looking for broken links and missing photos in older posts, so don’t be surprised if a link doesn’t work or a post refers to a photo that doesn’t exist. I will keep at it and all should be functional soon.
In the meantime, if you subscribed to the posts by email or RSS, you may have gotten a repeat email of the previous posts which occurred when I updated the web address. I think this was a one time event and future emails will only be sent when I have a new post. If you aren’t subscribed but want to be, you can click on the subscribe by RSS link to the right and one of the options is to subscribe by email instead of RSS feed. Also, if you have the old address of tomspdblog.blogspot.com bookmarked, please update your bookmark to tomspdblog.com.
And the final change was Summer is now Fall, which in Florida means that the humidity will start dropping and the temperatures will be perfect for tennis and other outdoor events instead of falling leaves and snow. Sounds OK to me!
This has been a busy month of events, travel and, of course, exercise. Here are some of the highlights.
We started the month by attending the Davis Phinney Foundation Victory Summit in Punta Gorda, FL (about an hour away). This was our second time to attend one of these events and it was even better than the first time. The event included motivational talks by Davis Phinney and Tim Hague who, with his son, won the first Amazing Race in Canada. In addition our event featured presentations by local medical personnel and support groups and a presentation by Connie Carpenter-Phinney about care partner strategies. If you get a chance to attend a Victory Summit (check the website for locations and dates), I highly recommend it.
Next we took a road trip from Sarasota to Hilton Head Island, SC to visit friends. On the way there and on the way back we stopped off in Amelia Island, FL where we enjoyed hiking at Fort Clinch State Park and Big and Little Talbot Islands State Parks.
After hiking, we took the car ferry across the St John River to Mayport, FL for a great sea food lunch before heading home.
The next event was lunch with friends at Frenchy’s Outpost Bar and Grill in Dunedin Fl where Mara saw this piano and is making plans to decorate our piano we have in Tennessee.
After lunch we went to Honeymoon Island state park and hiked the trail to an eagles nest where one eagle was on the nest and the mate appeared in a tree close by, you can just make them out in this photo. (even with the red arrows!)
Our next trip was going to West Virginia University Medical School in Morgantown, WV to watch our grand daughter Breanna receive her White Coat, signifying completion of two years of medical school and her transition to clinical training which will start this summer. We enjoyed the ceremony and Morgantown, cold weather and all!
So that’s a quick look at what’s been happening this month. We continue to shoot for at least an hour of exercise per day choosing from tennis, PD in Motion Dance Class, various classes at the YMCA (yoga, tai chi, and others) and Pedaling for PD. Yet another study by Northwestern was released in the last week or so showing the benefits of at least 150 minutes per week in slowing the progression of PD. And the best exercise??? The one you will do!!!
On April 1, we will attend the National Parkinson’s Foundation Moving Day Walk in Tampa. This will be our first Moving Day Walk and we are looking forward it as we kick off Parkinson’s Awareness Month.
“It does not matter how slowly you go as long as you do not stop.” – Confucius