• Where Does the Time Go?

    I have always heard that time flies as you get older and I guess they (whomever they are) were right. It seems like it was just a month or two ago since my 5th Anniversary  post last July.  Yet here we are 6 years since the start of my journey with Parkinson’s Disease.  Many of you have been following along for those 6 years as we became expert at researching PD, learning all we could by attending research conferences,  day long seminars, and attending the 4th World Parkinson’s Congress in Portland, OR.

    We have seen substantial progress in the past 6 years with researchers diving into the gene pool to look for ways to modify the progression, drug research that has resulted in several new drugs being approved, several clinical studies looking at re-purposing already approved drugs for use in PD, and new clinical trials involving implanting stem cells.   And don’t forget the great Sarasota experiment that resulted in our move to Sarasota, Fl and our subsequent love of tennis.   

    I am pleased to report that there have been no major changes to my symptoms during the past year.  I continue to exercise as much as possible playing tennis 3 to 5 days a week and attending the cycling for PD class twice a week. The biggest change has been the emergence of occasional dyskinesia, involuntary movements which are usually a result of the amount of medication needed to keep the symptoms at bay.   As I wrote in the last post, I seem to have figured out the right combination of extended release levadopa/carbadopa  (Rytary) , pramipexole, and regular release levadopa/carbadopa (Sinment)  which reduces my “off” time if I stay on schedule.

    If you saw me today playing tennis while the medication was working you would probably say “You don’t have PD.”  If you saw me when the medication has worn off, you would notice my limited arm movement, my limited leg movement resulting in short steps, how difficult it is to get out of a chair, and you would probably notice my lack of facial expression (the PD mask). You still might think “He doesn’t have PD” because I don’t have tremor, but I think you would agree my issues are caused by more than being 73 years old.  I feel like my progression continues to be slow and I credit exercise for keeping it that way.  I know I rarely mention the need for exercise in this blog 😀 but I will make a pitch today, find an exercise you like, and start exercising.  You might only go for a minute the first day, 2 minutes the next day and 3 minutes the 3rd day, but you will build up stamina and you will see a difference in your symptoms.

    Speaking of exercise, yesterday during our Tuesday cycling class, the management of the YMCA announced that they were closing the Sarasota YMCA’s on September 13, 2019.   Talk about a shock, we were flabbergasted!  Apparently the rumored financial mis-management finally caught up with the board and the only option was to close the buildings.  We are all looking for new alternative locations for our classes and hopefully we will have something by the 13th of September.  The high intensity exercise we get cycling has been a mainstay of my exercise program for the last 4 years and I can always tell when I miss a class or two.  Hopefully we get this worked out or I might have to take up running again or I guess I could play more tennis😎.

     

  • Welcome Summer!

    This has been a hectic, fast paced and exciting spring. So much has been going on that this is the first chance I’ve had to take some time and catch you up on what’s been happening. As long as you don’t count the times I started and dozed off in front of the screen leaving a trail of dddddddddd or some other letter across the page. 🙂

    When last we met, it was the middle of April and we had just completed our World Parkinson’s Day cycling class in the lobby of the YMCA. One of the pluses of living in Florida is everyone likes to come visit in the winter and spring before it gets too hot and humid. Another is, we like to play tennis in the winter and spring and fall (and summer!) so we kept busy for much of April playing tennis and enjoying our friends and family who visited during the month.

    In May we traveled to West Virginia University to attend our granddaughter Breanna’s graduation from medical school. It was an outstanding event as her parents presented her with her hood during the ceremony.

    We returned home and caught up on our tennis and cycling then in early June we traveled to Little Rock , Arkansas to attend Breanna’s wedding to fiancee Will. In between her graduation and the wedding, they had been to Italy for two weeks, purchased a home in NC where she will be a resident for the next 5 years, moved most of their belongings to the new location and found a chocolate lab puppy who will join them in a about two weeks. (Our first great grand dog!) And I thought we were busy!!

    And now it’s almost the end of June and we are gearing up to celebrate the Fourth of July with friends and family at the beach followed by a trip to Bald Head Island in North Carolina and then a trip out to Seattle to visit family.

    In between visiting, traveling and exercising I have spent many more weeks trying to determine the correct amount of Rytary and carbidopa/levodopa to take and I think I have finally hit on a combination that is working most of the time. I am taking two Rytary when I get up and then two carbidopa/levodopa 3 times a day in between with each dose accompanied by 1/2 tablet of 1 mg pramipexole and if I’m still off for whatever reason, I take an extra carbidopa/levodopa as needed. In talking with other PwP’s it seems that we all have a routine that works most of the time, and none of us want to add another med if we don’t have too so we do what we can to ‘make it work’.

    Next month will be the 6th anniversary of my diagnosis and I am as active if not more active than I was before I was diagnosed. When I go back and read some of my early posts I am certainly more active now than I was during the first year or so after diagnosis and I continue to believe that exercise helps me fight PD and slow the progression. In the past six years there have been several new medications approved along with new DBS equipment and the dopamine pump which supplies a steady amount of dopamine. And if you read the Science of Parkinson’s monthly summary (click on tab above) you will see that there continues to be a lot of interesting and promising research happening around the world. So I hope I can continue to slow my progression and benefit from some of the research results that get approved in the next 6 years!

  • Our World Parkinson’s Day Event

    As I mentioned in my last post, yesterday we moved our spin bikes out of the classroom and into the lobby of the YMCA and held our Pedaling for Parkinson’s class in the lobby . We had a good turnout of cyclists and attracted a lot of attention from Y members and visitors who stopped to watch us as class progressed. A member of the Neuro Challenge Foundation staff was there to answer questions and provide literature about PD and the foundation. And a reporter from the local news station, Suncoast News Network, was there and filmed us for a news report that was broadcast that evening. A video of the broadcast is below. A big thank you goes out to the YMCA staff for allowing us to hold our class in the lobby and to our instructors Kathy and Kelly for always challenging us to keep on pedaling. And kudos to all of the riders who participated in the event to bring awareness to PD.

    Parkinson’s Patients Peddle to Raise Awareness by Jenna Brew, Suncoast News Network

    Oh, you may have noticed a familiar face being interviewed towards the end of the video, yep that’s me making my TV debut. I’m pretty sure the offers for a starring role will be rolling in any day now 🙂

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

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

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

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