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

Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego. To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning. Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.

I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football. Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.

It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples

The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease. Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
Parkinson’s treatment through a proactive approach to self-care. The book is available free of charge in Ebook or print form here on the Foundation website.
And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.

I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here. Please join me and 40,000+ other PwP’s supporting the search for a cure. By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week. Read all about and sign up here.

Happy New Year!

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

Tag: Travel

Brrrr, It’s Cold!
Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego. To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning. Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.

I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football. Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.

It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
- The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
- The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease. Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
- NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
- The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
- The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
  Parkinson’s treatment through a proactive approach to self-care. The book is available free of charge in Ebook or print form here on the Foundation website.
- And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
  patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here. Please join me and 40,000+ other PwP’s supporting the search for a cure. By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week. Read all about and sign up here.

Happy New Year!

“It does not matter how slowly you go as long as you do not stop.” – Confucius
January 9, 2015
The PD Southern Symposium and Victory Summit

The PD Southern Symposium and Victory Summit

We had a wonderful time in Spartanburg SC at the Parkinson’s Disease Southern Symposium. I have tried to summarize what went on during this three day event below. Thanks go out to Lisa Cox, Linda Morgan, Ken Cater and Bill Wilkins, the team that conceived and planned a very successful event.

The first day consisted of opening ceremonies followed by exhibits and lunch at the Spartanburg County Library, a dance class at Ballet Spartanburg Studios and a screening of the documentary Capturing Grace by Dave Iverson. On our walk over to the library we met Steve Quam who has bicycled across the US 3 times (and motorcycled once) since he was diagnosed with PD in support of the Davis Phinney Foundation! He is also a musician and provided music before lunch was served.

Capturing Grace by Dave Iverson is an inspiring film which followed a group of PwP’s in Brooklyn as they trained for and presented a ballet/dance production. Watching the difference dance made in their symptoms was fascinating and the finale was great. I highly recommend you see it if you get a chance.

In the evening we attended a talk by Bill Geist, CBS Sunday Morning Correspondent and PwP, also sponsored by the Spartanburg County Library. He spoke about hiding his diagnoses from family, friends and co-workers for several years, finally ‘coming out’ on the show. We finished the busy day with a dinner where our panelists from the Atlanta Partner’s in Parkinson’s meeting were reunited. We enjoyed catching up with India Pender Martin during dinner.

After dinner Colonel Michael “Rich” Clifford, former astronaut joined Bill Giest at the podium to discuss living with Parkinson’s. Colonel Clifford was diagnosed with PD at age 42 but was cleared to fly by his NASA commander. He flew one more mission which included the first American spacewalk while docked to the Russian MIR space station in 1996. The historic space mission is the subject of a documentary called “The Astronaut’s Secret” which explores his career as an astronaut and how he and NASA kept his disease a secret for more than fifteen years.

Day two included time to peruse the exhibitors, a Support Group Luncheon hosted by the Parkinson’s Association of the Carolinas that included more music by Steve Quam, and a motivational presentation by John Bauman on the topic “Inspired by Parkinson’s: How to Have an Amazing Life in the Face of Life-Changing Events”.

We also heard from Dr. Michael Okun MD, Director of the Center of Movement Disorders and Neurorestoration at the University of Florida. He is a dynamic speaker and took questions from the audience about PD and finished with a quick summary of new research. Thanks to NPF who provided attendees with a free copy of his book “10 Secrets to Living Better with Parkinson’s”.

Our final activity for the day was to gather in the rotunda of “The George” a building nearby for about 45 minutes singing old favorites. It was a great hearing our singing amplified by the natural acoustics of the rotunda.

Day three was the Davis Phinney Foundation Victory Summit held at the TD Convention Center in Greenville, SC. The morning presentations included building your Parkinson’s Toolkit (eat right and exercise), the need for daily exercise (the only prescription with unlimited refills), cognitive change and non-motor symptoms (exercise body and mind to impact your mood and wellbeing), and research (sign up for Fox Trial Finder and participate in a clinical trial). Each presentation was made by leading Movement Disorder Specialists and a Physical Therapist and were informative and on point.

After lunch Local Hero awards were presented to Lisa Cox and Linda Morgan for their PD advocacy. This was followed by Moments of Victory, a presentation by Davis Phinney. He talked about his diagnoses, how DBS helped his tremor and why he believes in celebrating moments of victory with his characteristic arms above the head in a V. He pointed out we are a tribe and not alone in our fight against PD. It was an inspirational and motivating presentation that had the 600+ attendees on their feet, arms over their heads and ready to celebrate every victory.

We then attended a presentation on Medication Management and Strategies where we heard about the various medications used to treat PD symptoms. The final session we attended was Clinical Trials: Propelling Research Forward a panel discussion about current research. One topic we discussed was the need for clinical trial participants to support ongoing research, a topic that I am passionate about. Both patients and researchers recognize that changes are needed to the current process but that won’t happen overnight and in the meantime we need clinical trials and participants. If we don’t participate, we will continue to rely on a drug discovered almost 50 years ago that only treats our symptoms. Okay I’ll get off my soapbox for now, but expect to see more about this issue in future posts.

So that was the Victory Summit, a full day of information sharing and motivating sessions that made you know we are not alone and that research continues in the search for a cure. I highly recommend attending the Victory Summit if you get an opportunity. More information can be found on the Davis Phinney Foundation website.

Oh yes, I promised to mention my beer brewing adventure. I opened my first bottle of this batch today; it is a brown ale and was pretty tasty. This was my second attempt and it went a bit smoother than the first try but it is a process that uses the kitchen for about 4 hours and most of the pots and pans in the house!

At the Victory Summit we reconnected with Claudia Marshall, Research Engagement Assistant at the Michael J Fox Foundation, whom we met in Grand Rapids. We discussed the trial we are participating in and also how we can improve clinical trial participation. I’ll have more about that in the next post – see you then.

November 20, 2014
Clinical Trial Needs, Southern Symposium and NOLA!

I have previously posted about the need for clinical trial participants. I have joined Fox rial Finder which has a large database of trials and provides a list of possible research opportunities based on your desired parameters (distance from home, # of years with PD, etc.). Mara and I recently matched up for a trial being conducted at the University of Alabama Sparks Center, Mara as a control and I as a PD patient. The trail is called LRRK2 and Other Novel Exosome Proteins in Parkinson’s Disease (that’s a mouthful!) LRRK2 is one of the genetic markers closely associated with development of Parkinson’s Disease. The official description is as follows:

“This proposal seeks to 1) determine whether there are biomarkers associated with Parkinson’s disease (PD) susceptibility and/or progression in exosome-proteomes derived from PD patients versus controls, and 2) to determine if LRRK2 expression and/or phosphorylation are significantly lowered in the exosomes of individuals treated with the potent LRRK2 inhibitor sunitinib (a multi-kinase inhibitor compound), to establish an assay for on-target effects for future LRRK2 inhibitor clinical trials.”

Sounds pretty intimidating but all that is required now is giving urine and blood samples and Mara will be given the PD Screening questionnaire and I will be tested to verify my PD diagnoses. They expect it will take about 1.5 hours and we have an appointment next week, so I will provide an update after the visit.

Speaking of clinical trials, Michael J Fox Foundation has a need for PwP’s to participate in BioFIND, a study also looking for PD biomarkers. Participation in BioFIND requires only two visits to a clinical site in a two-week period. The visits will include a combination of clinical assessments, sample collection and written surveys. With the aim to complete recruitment as soon as possible, BioFIND needs volunteers now. Go to this link to find out if you are eligible and if there is a site near you. (I am not eligible as I haven’t been diagnosed for more than 4 years)

We are in Spartanburg SC for the Parkinson’s Disease Southern Symposium which starts tomorrow and runs for 4 days. Based on the agenda, it looks like we will be busy! We are looking forward to meeting old friends and making new friends. The agenda includes a screening of Capturing Grace, the documentary by Dave Iverson and attending the Davis Phinney Foundation Victory Summit, an all day event about living with Parkinson’s.

We had a great time in NOLA (New Orleans LA), attending a wedding and then spending a few days with friends touring the town. The weather was perfect and we enjoyed the sights, sounds, and food of the French Quarter which included a beignet and coffee at Cafe Du Monde. Our favorite spot for breakfast was TOAST a small restaurant just a block from the house we rented in Uptown. They had a great mural on the wall as you can see in this photo.

I know this is the second post without discussing my experiences brewing beer but I promise it will make the next one, it should be ready to taste early next week. See you then.

November 13, 2014

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

Tag: Travel

Brrrr, It’s Cold!

The PD Southern Symposium and Victory Summit

The PD Southern Symposium and Victory Summit

Clinical Trial Needs, Southern Symposium and NOLA!