• Catching Up

    We have had a busy late summer and fall and, unfortunately, I have not been a faithful blog poster.  But now the holiday season is coming up, so I’m sure I can keep up with timely blog posts 🙂

    To bring you up to date, in August, my brother in law Joe in Michigan failed the eye exam for his driver’s license renewal.  It was determined that he had severe cataracts in both eyes and shouldn’t have been driving at all!  So off we went to Michigan to get him back and forth to doctors appointments and two separate surgeries.  During the break between the first eye surgery and the second, we made it out to Colorado to visit family and friends, a trip we originally had scheduled in August to coincide with grandson Charlie’s 16th birthday.  We then went to Grand Rapids for the Rallying to the Challenge meeting (see my last post for details) before heading home.

    In October, we journeyed to Asheville, NC and met up with the Marcia and Erwin whom we knew from Kripalu and her stepsister and husband, June and Phil.  We had a great time touring the Biltmore House (America’s largest single family residence) and the River Art’s District and catching up since last March when we met up in Florida. Marcia and Erwin and another couple from Kripalu held an inaugural 5K race/walk in the Poconos in June and raised $26K for the Michael J Fox Foundation!

    A week or so later we were off to San Diego to visit Ryan, Sarah and Julian.  We got to see Julian play football, attended one of Sarah’s yoga classes, enjoyed several fine wines and meals and celebrated Ryan’s 40th birthday.  The weather was perfect and we got in a lot of walking and caught some great sunsets over the ocean.

    When we returned, I had my appointment with my Movement Disorder Specialist who was pleased with how things were going and recommended no changes to my medication regimen, in fact, he was willing to schedule the next appointment for a year away, but we decided we should continue the every 6 month’s cycle for now.

    We made a short trip last weekend to Jackson, MS to watch grandson Garrett play soccer in his college league semi-final soccer tournament, held at Milsaps College.  We were rained out the first night and the next day the team lost in the last 2 minutes of a well played game. It was our first (and last) time to see him play this year. 

    In our spare time, we have continued to build up the Tennessee Parkinson’s Disease Resources website which is now operational and we have printed cards with the website address which we are sending to support groups in Tennessee.  Our hope is patients will take an extra card or two and give it to both their primary care Doctor and their neurologist so they are aware that the site exists.   If it all works as we would like, the Doctor can order additional cards to have on hand for patients.  The goal is to let newly diagnosed PwP know they are not alone and resources are available.

    So that more or less brings us up to date and I promise I will try to meet my goal of at least two posts a month, even with the holiday’s coming up.  In the meantime, don’t forget to sign up for Fox Trial Finder and Fox Insight, we have over 50,000 profiles in Trial Finder and over 3000 in Insight but we need more!!  Click on the button at the top of the page or the Fox Insight icon to sign up.  Thanks!

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

  • Rallying to the Challenge – 2015

    We recently attended our second Grand Challenges in Parkinson’s research conference hosted by the Van Andel Research Institute in Grand Rapids, MI.  Again this year The Cure Parkinson’s Trust (UK) and Parkinson’s Movement(UK) sponsored the Rallying to the Challenge meeting which is conducted in conjunction with the research conference and provides an opportunity for researchers, patients and caregivers to exchange information. The theme for this year’s Rally was “Outcomes and Measures, a new look at Measuring Parkinson’s” and, as you will see, we had a very full two day agenda.

    Tom Isaacs, co-founder of the Cure Parkinson’s Trust, opened our portion of the meeting saying that together we are making a seismic shift for better research, research that includes the patient and the patient’s needs.  As a result of last years Rally a ‘Clinical Trials Charter’ (click here to view the charter) was developed as a cooperative effort by patients and researchers.  A UK multi-center clinical trial has adopted the charter for their research which will provide a real-world test and a stepping stone to wider adoption.  We were amazed to see how our efforts from just a year ago have paid off in the cooperative development of this charter by patients and researchers. (Read the post from last year here)

    Tom then discussed this year’s Challenge – How do we improve outcomes and measures in clinical trials?  The emphasis again this year was on improving the patient experience and introducing patient centered change to the research process.  In addition we will discuss how data gathered from new technology, (wearable sensors, smartphone apps, etc) can provide new measures and improve some of the current measures.

    Jon Palfreman, PwP and author of the recently released “Brain Storms – The Race to Unlock the Mysteries of Parkinson’s Disease” pointed out that the Unified Parkinson’s Disease Rating Scale (UPDRS) is primarily subjective and provides only a snapshot of the symptoms you are having when administered, usually 1 or 2 times a year during your Dr. visit.  Ideally, with the advent of wearable sensors and other technology, you should be able to provide a picture of your symptoms for the entire period between Dr. visits and get real time feedback yourself.

    Dr. Soania Mathur and Dr. Jon Stamford reviewed the results of this year’s survey about the symptoms of PD which have the most important impact  quality of life. Interestingly, out of 492 responses to the survey not one respondent listed their top five symptoms in the same order. In fact, if you look at this slide from the final presentation, I count 28 symptoms that were brought up when answering the question “What symptoms most affect your quality of life?” This slide certainly points out that PD is truly different for each of us.

    The top symptoms in both categories were put into smaller groupings and we broke out into focus groups to discuss how to improve measurement of our set of symptoms. Every focus group not only developed ideas for measuring symptoms, but also came up with tips and tricks for dealing with the issue, for example walking backwards to relax dystonia of the foot.

    The next morning, we had an almost overwhelming number of presentations about new technological devices that will help measure PD symptoms when on or off medication.  Presenter’s included Ken Kubota from Michael J Fox Foundation (Fox Insight Wearable Trial), Anupam Pathak Ph.D. from Google (the Lyft spoon), Bruce Hellman (uMotif Smartphone app now available in the UK and coming soon to the US and Canada) and Caroline Tanner (mPower also a smartphone app developed from the SmartPhone PD clinical test I participated in)

    We also had presentations from a Davis Phinney Foundation representative about a social networking program they are developing, one from Peter Schmidt of NPF about their Parkinson’s Outcome Project (another one I am participating in) and from Eli Pollard executive director of World Parkinson’s Coalition  about PowerThroughParkinson’s, a program they are bringing out with the Brian Grant Foundation that encourages PwP to commit to exercise and eat right.

    Day Two also included a presentation from the renowned Parkinson’s Doctor and researcher Bas Bloem from the Netherlands about Parkinson’sNet, a program he helped develop in the Netherlands 10 years ago and which has been implemented in LA area and soon in Grand Rapids.  ParkinsonNet has one goal: to guarantee the best possible care
    for people suffering from Parkinson’s Disease.The program has been extremely successful in providing expert care while also reducing costs.

    We then reconvened with the researchers and Tom Isaacs and other members of Parkinson’s Movement made a presentation of the results of our meeting and the need for patient involvement in the development of measures that would be the:

    • Right Measure – developed with the end user as a partner
    • Right Person – measure what is important to the person
    • Right Situation – don’t forgot off periods and how PD changes

    In addition to meeting old friends and making new ones, we also enjoyed the exhibition of photos by Norwegian Photographer Andres Leines entitled “This is Parkinson’s”.  Andres has early onset PD and has been taking pictures of other EOPD patients to point out that Parkinson’s is not just tremors and doesn’t just effect seniors. You can view some of the photos in this excellent YouTube video.

    And finally, the Michael J Fox Foundation just announced that the Fox Clinical Trial Program has exceeded 50,000 registered volunteers!  In case you’re not one of us, click on the big shiny button at the top of this page and sign up!  Thanks.

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

     

  • Links and More Links

    No not sausage links, website links! I thought I would devote this post to what’s going on in the Parkinson’s world.  As you know I follow a number of other Parkinson’s blogs and here are a few items of interest from month or so, click on the link to read the entire post (will open in a new tab).

    Inosine Trial Secures Phase III Funding to Study Effect on Slowing Parkinson’s.  Inosine is a precursor to the antioxidant of urate. Observational studies had shown people with higher levels of urate had lower risk of Parkinson’s disease (PD) and, if diagnosed with PD, slower disease progression. The trial will start early next year in 60 sites.

    Parkinson’s Psychosis Drug One Step Closer to FDA Approval Acadia Pharmaceuticals announced  that it has submitted a New Drug Application to the FDA seeking approval for its drug Nuplazid (the compound pimavanserin) for the treatment of psychosis associated with Parkinson’s disease (PD).  Current drugs used to treat PD psychosis have safety concerns and serious side effects for PD patients.  A Phase III study showed the drug significantly reduced psychosis compared to placebo without worsening motor function. The study also showed the drug was safe and well tolerated.

    How to Find the Right Dr   Some excellent suggestions from the Parkinson’s Community on linking up with the right Doctor for PD treatment.  My recommendation –  if possible, link up with a Movement Disorder Specialist.

    10 Breakthrough Therapies for Parkinson’s Disease The NPF Medical Director, Dr. Michael Okun, has published a new book covering new therapies for PD.  I purchased a copy the day it was released and it is an excellent book, as was his first book,  “Parkinson’s Treatment 10 Secrets to a Happier Life with Parkinson’s Disease”.  He has an excellent writing style and there are chapters covering new drugs (released and in the pipeline), effects of exercise, coffee, tea and Marijuana, new DBS advances and stem cell therapies among others.  I highly recommend both of his books.

    How Do I Know If I’m Doing the Right Thing When I Exercise?
    A post from PD Gladiators, an Atlanta based non profit devoted to combating PD with vigorous exercise.  There has been a lot of emphasis on the benefits of exercise and this post discusses what exercise is optimal and how often you should exercise.

    Delay the Disease, an Ohio based exercise program, is offering the Handwriting Challenge This program involves doing four simple exercises every day for 12 weeks.  The exercises should take about 10 minutes to complete and are designed to test a theory they have that large muscle exercises will improve motor dexterity including micrographia (tiny handwriting).  Every three weeks you write out the same sentence with the hope that your handwriting improves. Even if it doesn’t the exercises can’t hurt!

    What’s It Like Having PD   An excellent post by Bruce Ballard who blogs as Parking Suns. Those of us with PD will agree with these ideas to simulate PD for people who don’t have PD.  I found numbers 1 and 2 an accurate description of what it feels like without medication, I’m sure you will find a few that match your symptoms too.

    Coming up, Mara and I will be attending the second “Rallying to the Challenge” event organized by the Cure Parkinson’s Trust and the Van Andel Research Institute in Grand Rapids, MI at the end of September.  I wrote about the first meeting here and this years meeting will center on how to introduce new technology and additional personalized patient-centric measures into clinical trials.  We are looking forward to catching up with members of our Global support group, meeting new members and enjoying the ArtPrize festival in downtown Grand Rapids.

    OK, if you have followed every link in this post, you have a bunch of tab’s open and your browser is getting ready to explode so I’ll stop with a quick reminder, sign up for Fox Trial Finder (click on the button above and open one more tab).

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

IT IS WHAT IT IS!

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

Other Posts

IT IS WHAT IT IS!

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

Other Posts

Partners in Parkinson’s – The Sequel

Written by

Tom Eckhardt

in

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

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