Here it is almost the end of May all ready! We have been busy with two trips to Memphis, one for a concert and one for our oldest granddaughter’s graduation from Rhodes College. So thought I would post a quick update from….THE BEACH! Yep we are at the beach on Bald Head Island for the week.

First the concert, little did we know but there are Internet stars who are famous for videos they post on Vine and YouTube and they draw quite the crowd of young girls when they tour. Somehow we agreed to take granddaughter McKenna and her friend to Memphis to catch the show. This involved a 5.5 hour drive listening to the music from the various performers (actually not too bad, as Mara said, “I could understand the lyrics”), then standing in line for several days (OK maybe two hours) because the girls had VIP tickets that included a meet and greet with the stars 2 hours before the show started. And that is how Mara ended up in this great photo with TEZ, one of the stars. The girls reported the concert was great, we elected to sit on the patio at the venue with several other parents, grand parents or guardians, skipping the screaming and pushing and shoving.

The following week, we returned to Memphis for granddaughter Breanna’s graduation from Rhodes College. It seems like it was just yesterday when we made our first trip to Memphis to take her to a summer soccer camp before her freshman year and now she has graduated Cuma Laud with a degree in Biology and plans to attend medical school.

It was a rainy morning but the graduation ceremony was wonderful and we enjoyed the weekend with the graduate and family and friends. (Yes that is me on the left wearing my Dad’s old straw hat and a bow tie! A Southern gentleman, all the way)

We have been working on ideas to make local information about PD such as a list of local support groups, links to national organizations, links to local programs like Big and Loud, etc. available to PD Patients and Care Partners via the medical community. In talking with PD patients, it is surprising how many of them mention they have had problems getting support group and local resource information even when they ask their doctor.

We want to create something simple, like a business card with a brief explanation and the website address that could be given to PD patients. We plan to try it out with East Tennessee information and expand statewide if it works. This is a collaborative effort with input from PD stakeholders including other PwP, representatives from national organizations and local groups, and the medical community. The site is a work in progress, so if you are a Tennessee reader of my blog or just interested in the idea, you can check it out here.

Another exciting event this month, the Cure Parkinson’s Trust in the UK released their annual report for 2015 and it includes a reprint of a portion of my blog post regarding the Grand Challenge meeting we attended last September. In addition to the reprint, the report contains a wealth of information about the Trust’s programs and the progress that has been made since that meeting and can be viewed here.

And now we are finishing the month with a week at the beach with family, which will give us a chance to up the exercise routine again, catch up on a lot of reading, and maybe I’ll even work on the class I started a month or so ago on how to build website! Which reminds me, I updated the National PD Resource page as part of the new website design, feel free to check it out and while you are waiting for my next post, don’t forget to sign up for Fox Trial Finder and the Fox Insight trial.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

It’s Clinical Trial Awareness Week

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.

Here is the good news, there are over 400 trials on Fox Trial Finder and many don’t require you to be drug free and many that are looking for volunteers without Parkinson’s as control participants so you can get the friends and family involved too. And several that are web based including Fox Insight so you can participate without leaving your house!

As a participant in 6 trials so far, I can tell you that you can’t beat the good feeling you get from doing your part to advance Parkinson’s research and maybe find the cure. Join me and sign up for Fox Trial Finder and Fox Insight today! Thanks.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Walking for Parkinson’s Research

Yesterday was our local Parkinson’s Walk held in Oak Ridge,TN. The weather websites were predicting rain and thunderstorms, but it turned out to just be a cloudy day. Our local walk is in support of the Unity Walk in New York City and 100% of the funds raised go to the seven major Parkinson’s research organizations.Despite the weather forecast we had a good turnout and raised over $8100 for PD research. I want to again thank all of you who made a donation in support of Mara and me and Team PK Hope is Alive – THANKS!

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.

This week I moved the blog to its own internet domain www.tomspdblog.com which is easier for me (and you) to remember when people ask for the address. Google assures me there should be no noticeable change for readers as both the old and the new address will end up at the blog. So far it seems to be working OK, but those of you who have the address bookmarked may want to update your bookmark to the new address.

Next Thursday we go to Vanderbilt for my next appointment with my Movement Disorder Specialist. I continue to be so much better on the new medication and I hope Dr. Davis agrees. I am also hoping to be considered for the NPF Parkinson’s Outcomes Project which is conducted at the NPF Center’s of Excellence of which Vanderbilt is one. They have been following PwP since 2009 with a goal of establishing models of excellent PD care for best health outcomes. You can read more on the NPF website at this link .

I’m still working at reviewing some of the exercise options available for PwP, maybe it will be done by the next post (I’m pretty sure procrastination is another non motor symptom!) In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight and be an agent for change!

“It does not matter how slowly you go as long as you do not stop.” – Confucius

We are home from our extended beach stay and, while we are missing the beach, it is spring time here in Eastern Tennessee and the flowering trees and bushes are beautiful, the grass is green and the daffodils and tulips are in full bloom.

April is Parkinson’s Awareness Month and there have been many excellent posts by the Parkinson’s bloggers that I follow including one by Corey King who blogs about his journey with early onset Parkinson’s Disease. His latest post, Acts of Kindness, talks about this being his sixth Parkinson’s Awareness Month and touches on our desire for a cure and how long it will take for FDA approval even if a cure was found today. And then he says this about awareness:

“Awareness is valuable when it is followed by action. So, for me, this April and every April to follow until my last April will be Parkinson’s Action Month. If you’re inclined (and I suspect you might be, if you read this blog regularly), be aware, and ACT on your awareness. Walk or run in support of research, and form a team or obtain sponsors. Comfort a friend who needs it, and instead of saying “let me know if you need anything,” ask, “Can I bring you dinner on Thursday? There’s a new exhibit at the McNay – wanna go with me on Saturday?” Learn and be aware; then teach. Then, come together and act.

Money and research is important, but connectedness and community is just as important. Money and research will eventually enable us to find a cure. And our connectedness will help us get through this night, and the next. The American Parkinson’s Disease Association says it very elegantly – their stated mission is to “ease the burden and find the cure.” We may not be close to a cure for PD; on the other hand, there may be one discovered tonight. In the US alone, however, there are more than 1 million people with PD that have to get out of bed tomorrow, and use the gift of life as well as we can. We can’t rely solely on the hope for a cure, but while we anticipate one, perhaps we can rely on each other, and on you.”

I found Corey’s thoughts on awareness to be right on target and in line with what we have learned in the last two years: we are a community and we need to stay connected and we need to support each other. So we will continue our efforts to find volunteers for clinical trials, to advocate for patient involvement in the research process, to attend our local support groups and to reach out to other PwP’s via this blog and as Trial Finder Ambassadors because, as Corey states at the end of his post:

“… if we can ease the burden, maybe we can make the road to a cure easier to walk.”

You can read Corey’s entire post here at his blog The Crooked Path .

On April 25th PK Hope is Alive support group will hold a local Parkinson’s Unity Walk in support of the national Parkinson’s Unity Walk held the same day in Central Park. The great thing about this event is 100% of the proceeds go to Parkinson’s research funded by seven major U. S. Parkinson’s organizations. Mara and I will be walking in the local event and will also provide an information table for the Michael J Fox Foundation Trial Finder, our first event as Fox Trial Finder Ambassadors. And we have been asked to make some opening remarks before the walk starts! If you are in the Eastern Tennessee area we would love it if you can join us and other PwP’s and their families and friends for a relaxing 1.2 mile walk around Bissel Park in Oak Ridge. More information about the local event can be found here. If you are unable to attend but would like to support us and Parkinson’s research you can make an online donation here.

We are working to keep up the exercise level we established at the beach and I am completing a review of the various exercise options available for PwP’s and hope to have that done by the next post. In the meantime don’t forget to sign up for Fox Trial Finder and Fox Insight and help advance Parkinson’s research.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

Year: 2015

Parkinson’s Awareness Month 2015

We are home from our extended beach stay and, while we are missing the beach, it is spring time here in Eastern Tennessee and the flowering trees and bushes are beautiful, the grass is green and the daffodils and tulips are in full bloom.
April is Parkinson’s Awareness Month and there have been many excellent posts by the Parkinson’s bloggers that I follow including one by Corey King who blogs about his journey with early onset Parkinson’s Disease. His latest post, Acts of Kindness, talks about this being his sixth Parkinson’s Awareness Month and touches on our desire for a cure and how long it will take for FDA approval even if a cure was found today. And then he says this about awareness:

“Awareness is valuable when it is followed by action. So, for me, this April and every April to follow until my last April will be Parkinson’s Action Month. If you’re inclined (and I suspect you might be, if you read this blog regularly), be aware, and ACT on your awareness. Walk or run in support of research, and form a team or obtain sponsors. Comfort a friend who needs it, and instead of saying “let me know if you need anything,” ask, “Can I bring you dinner on Thursday? There’s a new exhibit at the McNay – wanna go with me on Saturday?” Learn and be aware; then teach. Then, come together and act.

Money and research is important, but connectedness and community is just as important. Money and research will eventually enable us to find a cure. And our connectedness will help us get through this night, and the next. The American Parkinson’s Disease Association says it very elegantly – their stated mission is to “ease the burden and find the cure.” We may not be close to a cure for PD; on the other hand, there may be one discovered tonight. In the US alone, however, there are more than 1 million people with PD that have to get out of bed tomorrow, and use the gift of life as well as we can. We can’t rely solely on the hope for a cure, but while we anticipate one, perhaps we can rely on each other, and on you.”

I found Corey’s thoughts on awareness to be right on target and in line with what we have learned in the last two years: we are a community and we need to stay connected and we need to support each other. So we will continue our efforts to find volunteers for clinical trials, to advocate for patient involvement in the research process, to attend our local support groups and to reach out to other PwP’s via this blog and as Trial Finder Ambassadors because, as Corey states at the end of his post:

“… if we can ease the burden, maybe we can make the road to a cure easier to walk.”

You can read Corey’s entire post here at his blog The Crooked Path .

On April 25th PK Hope is Alive support group will hold a local Parkinson’s Unity Walk in support of the national Parkinson’s Unity Walk held the same day in Central Park. The great thing about this event is 100% of the proceeds go to Parkinson’s research funded by seven major U. S. Parkinson’s organizations. Mara and I will be walking in the local event and will also provide an information table for the Michael J Fox Foundation Trial Finder, our first event as Fox Trial Finder Ambassadors. And we have been asked to make some opening remarks before the walk starts! If you are in the Eastern Tennessee area we would love it if you can join us and other PwP’s and their families and friends for a relaxing 1.2 mile walk around Bissel Park in Oak Ridge. More information about the local event can be found here. If you are unable to attend but would like to support us and Parkinson’s research you can make an online donation here.

We are working to keep up the exercise level we established at the beach and I am completing a review of the various exercise options available for PwP’s and hope to have that done by the next post. In the meantime don’t forget to sign up for Fox Trial Finder and Fox Insight and help advance Parkinson’s research.

“It does not matter how slowly you go as long as you do not stop.” – Confucius

April 7, 2015
Dancing and Singing at the Beach!

It’s been a busy couple of weeks and I know everyone is waiting for an update from the beach 🙂 As I mentioned in the last post we were planning a Kripalu mini-reunion with Joel and Melisa and Marcia and Erwin and we were able to get together for lunch and then a nice visit while sitting on the beach. As Marcia said later, “..it felt like connecting with very close family.” We all caught up on what has happened since October 2013 which, of course, included what medications we were taking, comparing notes on doctor visits, etc. Marcia and Erwin along with another couple from our Kripalu visit are staging the first Pocono FoxTrot 5K for Parkinson’s with the proceeds going to the Michael J Fox Foundation. If you are going to be in the Pocono’s area June 20th, you can sign up for the 5K run/walk, the 1 mile community walk or the Kids 1 mile run/walk at this link.

A few days later, we attended our second Parkinson’s Cafe event, a backstage tour of the Sarasota Ballet. This tour included a chance to watch the ballet master conduct training for about 30 cast members and students which was fascinating, they just flew across the room executing jumps and turns like they had wings!After the tour, we participated in a PD in Motion class, a dance/exercise class for PD patients which is conducted every week by the Neuro Challenge Foundation here in Sarasota. The program was started in NYC and has expanded nationwide. As you can see, most of the exercises were done sitting down and involved moving legs, arms, and torso. We really enjoyed it and we attended the next class and will catch a couple more before we leave the beach.

And this week we attended a choral singing class, also sponsored by the Neuro Challenge Foundation. Called the Off Key Choir about 45-50 of us sang some Irish tunes since it was St Patrick’s day, and, by the end we did it in 4 part harmony! This was a great way to learn breathing and speech techniques to help with the soft voice of PwP. It was great fun and we are happy Merrily and Robert Manthey told us about it and invited us to attend.

We met Merrily at the Parkinson’s Cafe event and she told us how a year ago, she was in a wheelchair but no longer needs it after participating in the exercise programs provided by the Sarasota Memorial Hospital Healthfit Gym. In fact her story was featured in the February 2015 edition of Sarasota Magazine. Merrily is an outstanding example of how exercise can help fight PD. Mara and I are convinced that increasing my exercise time has reduced my symptoms and I’m looking at other exercise programs that might provide additional benefit, you can expect to hear more about that project in the next post.

We also had a nice visit with Tom and Marilyn, our friends from Colorado, the weather was great and we got in our long walks every morning and beach time every afternoon and took in a play at the Aslo Theater. Good Times, Good Times!

Recently Sage Bionetworks announced an app called mPower, as part of the Apple iPhone Research Kit. Currently only available for the iPhone, mPower will gather information daily from users which will feed into a database for analysis. At the same time the Michael J Fox Foundation announced Fox Insight, an online clinical trial for both PwP’s and those without PD who will complete a series of surveys every 90 days regarding their health, symptoms, medications, etc. You can link it to your Fox Trial Finder profile during the sign up process and soon you will also be able to link to the mPower app information. It is easy to enroll and takes only about 20 – 30 minutes to complete the surveys plus you can print a report of the results to take along on Doctor visits.

Until next time..oh wait I forgot to remind you to sign up for Fox Trial Finder and now Fox Insight!

“It does not matter how slowly you go as long as you do not stop.” – Confucius

March 18, 2015
Partners in Parkinson’s – The Sequel
This week we attended the Partners in Parkinson’s event in Fort Lauderdale, FL sponsored by Michael J Fox Foundation & AbbVie . We attended this event in Atlanta last year and came away with new information and new friends as reported in a previous post, On the Road Again. Since we were in Florida, we thought we would attend the Ft Lauderdale event to find out what’s new, make some new friends, and catch up with Claudia Marshall who heads up the Fox Trial Finder (FTF) Ambassador program and get some pointers on our new roles as FTF Ambassadors.

This year’s event followed the same format at last year with the morning panel sessions covering:
- The Many Faces of Parkinson’s Disease – Moderator Dave Iverson and the four panelists explored how their lives have changed since their PD diagnoses. Each of the panelists discussed how they approached telling family, friends and coworkers, and where they turned for more information about PD, among other topics.
- Seeing a Movement Disorder Specialist: What to Know, Ask and Expect – This panel included Bob Harmon and his wife Cecily. Bob is also a FTF Ambassador whom I met at the Sarasota meeting a few weeks ago. They were interviewed by Dr Stuart Isaacson, a local Movement Disorder Specialist. It was a great session with Dr Isaacson asking Bob a series of questions about his symptoms just as if it was a real appointment. When Bob indicated that mornings are difficult as he takes his last dose of medications at 9pm, Dr Isaacson recommended a change to the timing of his medications to help alleviate the problem. They also discussed acting out of dreams, bladder urgency and other non motor symptoms. After each question Dr Isaacson offered suggestions for new medication or timing of medication or other solutions Bob could take to reduce the impact of the symptom. He even conducted the usual tests like tapping feet and fingers and watching him walk across the stage. And like the speakers at the Sarasota meeting, Dr Isaacson also reinforced the need for regular exercise. Once again, this was great example of why you should see a Movement Disorder Specialist if at all possible.
- Parkinson’s Research: The Road Ahead – Moderator Dave Iverson and the panel discussed the new drugs recently released (Rytary, the extended release levodopa and Duopa, the intestinal gel levodopa), plus what’s coming up such as an inhaler to provide dopamine quickly, new advancements in DBS, and genetic research among other topics. They also pointed out that recent research has shown that regular exercise is beneficial and slows down the progression of PD.
The afternoon sessions included the breakout sessions:
- Living Well with Parkinson’s – conducted by The Davis Phinney Foundation which provides a holistic approach based on exercise and diet that provides lifelong benefits.
- Building Connections with Family, Friends and Community – moderated by Dave Iverson, the panelists in this session discussed personal relationships, how they deal with PD and what they have done to promote awareness about PD.
- I’m Still Wondering About – an opportunity to ask the experts questions that weren’t covered during the morning sessions.
Once again, this was an extremely informative event that presented timely information to an audience hungry to learn more about PD.
The resource fair provided opportunities for participants to meet with local south Florida representatives of the NPF, PAN, and PDF along with MJF and to meet with local providers of PD related medical care such as BIG and LOUD. And we met with Claudia and had an opportunity to further discuss the FTF Ambassador program and watch the FTF Ambassadors in action as many attendee’s stopped by their table for information about FTF.

As happened at the last event, we added several new members to our ‘world wide’ support group. One of our table mates grew up in Colorado so in addition to comparing notes about our PD, we discussed all things Colorado. Another table mate had just moved to Florida to help care for his father who has PD and he was very interested in all of the information we received during each session.

We also ran into a couple we had met at Kripalu in October, 2013, Marcia and Erwin Guberman. They have been visiting in Florida for several weeks and will be in the Sarasota area this weekend so we hope to hold a mini-reunion with them and Melissa Wenig and Joel Gordon our Sarasota friends who we also met at Kripalu. And what would a meeting be without seeing Bill Wilkerson from our Atlanta panel, it seems he follows us everywhere :). We congratulated him on being recently named this year’s recipient of the Alan Bonander Humanitarian Award which he will receive at the National Parkinson’s Unity Walk in April in New York City.

It was a great event (again) and we highly recommend (again) attending a Partner’s in Parkinson’s event if one is held near you. You can check the 2015 locations and register on the PIP Site.

Next week we will attend another Parkinson’s Cafe event at the Sarasota Ballet and we have guests coming from Colorado for some beach time. Until next time, if you haven’t signed up for Fox Trial Finder you can do it here and if you have signed up take time to check your trial matches or update your profile at the same link.

“It does not matter how slowly you go as long as you do not stop.” – Confucius
March 1, 2015

The Busy Month of May

It’s Clinical Trial Awareness Week

Walking for Parkinson’s Research

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Other Posts

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Year: 2015

Parkinson’s Awareness Month 2015

Dancing and Singing at the Beach!

Partners in Parkinson’s – The Sequel