• “The Team”

    I was listening to the BBC World Service broadcast this weekend and heard a very interesting interview with John Harbaugh, coach of the Baltimore Ravens NFL football team.  One of his guiding coaching philosophy’s  came from the legendary University of Michigan coach Bo Shembechler who believed in “The Team.”  Many of the Parkinson’s support organizations talk about the need for a team approach in battling Parkinson’s.  For example, The National Parkinson’s Foundation (NPF) have designated Centers of Excellence and Care Centers that provide a team approach. In fact, that designation is what led to my visit to the University of Florida Movement Disorders Center in January.  You can read about my visit here.

    Now the Michael J Fox Foundation and AbbVie Inc have teamed up to form Partners in Parkinson’s which “… aims to fill in knowledge gaps, provide new educational tools and resources for the Parkinson’s community to help Parkinson’s patients and caregivers optimize care at every stage of the disease, now and in the future.”   Their motto is ‘Discover the Benefit of  Team’ and they have a great website which is chock full of good information including a section on “Building your Care Team”  In addition to the website they are conducting informational events in cities across the country (we are signed up for the Atlanta event in September) and the site includes a search tool to find Movement Disorder Specialist (MDS) in your area.

    Of course ‘My Team‘ includes my doctor, my neurologist, my physical therapist and the other medical personnel who are in charge of my medical care. But of even more importance, my team includes my wonderful wife/primary caregiver, family members, friends, the other PwP bloggers I read or follow on twitter, the members of the support groups I attend, and you, the readers of this blog. All of you provide me with needed support, both physical and mental, helping me deal with my Parkinson’s disease. You are all appreciated and I thank you for your support.

    And for me and other People with Parkinson’s ‘Our Team‘ includes the many researchers who are out to find better methods of treating or curing Parkinson’s and the many organizations such as The Michael J Fox Foundation, the National Parkinson’s Foundation, the Parkinson’s Disease Foundation, the Parkinson’s Action Network and others who provide us with up to date information, help to prioritize and fund the research, and advocate for our rights.  All of the ‘Our Team’ members need and deserve our thanks and support.

    As I mentioned in my last post, I continue use the Fox Trial Finder to look for clinical trials and I have been accepted in one that tracks my typing cadence to measure my fine motor skills.  I suppose they are measuring that cadence right now 🙂  I will get the results at the end of the 90 day test period.  I definitely notice problems with my fine motor skills so will be interested to see what they discover.

    Last week was support group week and we attended both groups.  The East TN group included a presentation on adaptive equipment available to deal with problems like putting on shoes, buttoning shirts, cooking, eating, etc.  The local group presentation was from a Physical Therapist who is trained in the LSTV BIG program developed for Parkinson’s patients.   The program is a four week, four days a week training program that aims to improve gait, trunk rotation and balance.  I had read about the program but was not aware it was offered locally.  Last weekend was also high school graduation weekend for our oldest grandson, Garrett , more on that exciting event in the next post.

  • West Coast Travels

    Hello from San Diego! We have had a wonderful trip to the Southwest and West Coast.  We spent the first couple of days in Tucson with Karen and Jerry, friends from Bay City, MI.  Jerry was diagnosed with Parkinson’s at about the same time as I was so we spent some time comparing our different symptoms, medications, and such. As always, I found it interesting how each of us experience different PD symptoms, what a crazy disease.

    We explored Tucson and the surrounding area for a couple of days before leaving for San Diego.  Karen and Jerry were excellent hosts and we had a great time hiking in Sabino Canyon, walking around downtown Tucson and enjoying the happy hour at the Ritz Carlton at Dove Mountain where we could hear echos from a flutist playing Indian flutes across the canyon from the outside patio.

    We left Tucson and drove to San Diego where Ryan, Sarah and Julian were in the process of moving out of their apartment and into their new residence a few blocks away.  They had just started the move and we got to help with emptying boxes, putting away household items, etc.  and still found time to attend a couple of Julian’s Lacrosse games, go to the beach for sunsets and nice walks, and visit with Sarah’s sister Allison and her husband Kevin and their new little baby, Jack, born two days before we got here.  We have enjoyed several great meals, a trip to San Clemente, and a great lunch at the Stone Brewery World Bistro – Liberty Station in San Diego.  It has been a great visit and we are glad to enjoy their company and to help them with the move.

    I’ve been on the new increased medication dose for about a week and a half and have seen good improvement with my gait and balance.  Also I haven’t had problems with fatigue despite the busy days.  I have been keeping up with my research and saw an interesting article today about the benefits of acupuncture for balance and gait problems.  It certainly sounds promising and worth looking into further.  I applied for two clinical trials last week but didn’t meet all of the criteria for either one this time around.  Lack of research participants is a big problem and I am registered with the Michael J Fox Trial Finder to get notifications of any new trials that I might qualify for so maybe next time.  I urge all you PWPs out there to register, we need to support the research being done to defeat Parkinson’s.

    We are off to Sierra Vista, AZ next for a few more days of visiting with friends before we return home.  In the meantime, don’t forget it is still Parkinson’s Awareness Month. This video by Davis Phinney, former Professional and Olympic bike racer with Parkinson’s, is inspirational and worth watching.  It is about 23 minutes long and was filmed at one of his Victory Summits that he holds around the country.  You can view the video here .  Until next time, remember It Is What It Is!

  • Will This Winter Ever End?

    Hello from cold and snowy Eastern Tennessee, where we are forecast to set a new record low tonight, 28 degrees, which will do wonders for all the fruit trees and new plants just coming up after a nice warm typical April week.  But we have a plan, we are leaving for Tucson tomorrow morning where it is forecast to be 90 degrees!

    The East Tennessee Parkinson’s Unity walk was great, a nice turn out on a cool and windy Saturday morning, about 150 walkers.  Several nice exhibits, a nice send off talk from a local Neurologist and away we went for a nice 1.5 mile walk around the park in Oak Ridge.  Another great opportunity to meet and talk with other PWP’s.

    I had an appointment with my Neurologist today and we have decided to increase the amount of my medication to see if we can improve my balance and fine motor skills.  We discussed when to switch to the ‘gold standard’ drug, Levadopa.  He felt that as long as I am getting effective response from my current drug with limited or no side effects, we should hold off, so that is the plan for now.

    As you have noticed, I still haven’t posted a list of blogs I follow, but one I follow Parkinson’s Journey, by Sherri Woodbridge, has a list of blogs as part of her Parkinson’s Awareness Month posts and I was pleased to see mine listed.  You can view her entire list here , and if you have time, I highly recommend reading her other posts for April, they have all been informative and I look forward to each daily post.

    As I mentioned in the opening, we are off to Arizona to visit with friends and to San Diego to visit with my son and his family so my next post will be from the western side of the country.  Until then, remember, It Is What It Is!

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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