• Welcome 2021!!

    Happy New Year!!  I don’t know about you but I have never been so happy to leave a year behind.  It has been a year of trials and tribulations and wrinkled hands from so much washing.  We have averaged  5 – 7 books per week since March, lived through almost 3 months with no tennis and discovered Zoom can be used for just about everything from exercise classes to family gatherings.  

    We have survived not eating out unless we can eat outside, wearing a mask everywhere you go, and not hugging.  We go nowhere except to the grocery store and the tennis court which has reduced gasoline use and carbon in the air.  

    I could go on and on about what we will not miss about 2020 but we did learn some lesson from 2020. I received this list from a good friend and reader of this blog  and I thought I would pass it along to you all.  

    It has been about 5 months since  my last post but with the COVID-19 restrictions there is very little news to report.   As noted above, we have been playing tennis with a small group (our pod) and the ever resourceful Pedaling for PD instructor Kathy has been teaching classes 3 days a week via Zoom.  I purchased a spin bike for home in order to keep up with the exercise as much a possible.

    I finally had a face to face visit with my neurologist in October which went well with no changes to medications or routines.  I also met with a speech pathologist and we decided the Speak Out! program would be beneficial as my voice has been getting softer and softer requiring me to repeat myself often.

    Speak Out! is a program where you meet one on one  with the speech pathologists three times  a week for four weeks  and learn to speak with intent!  The sessions were very focused on improving the volume of my voice using breathing exercises, visualising projecting my voice and practicing going from low to high and back while saying ahhhh.  In addition to the voice exercises, they also have cognitive drills for each lesson and a reading aloud exercise.  I found the program to be very beneficial and I have continued to work at speaking with intent everyday. 

    We spent the holidays at home with no family visitors for the first time that we can remember.  Hopefully next year we can return to normal as the vaccine is rolled out.

    Speaking of the vaccine, through a combination of serendipitous events, Mara and I received the first Moderna shot last week and are scheduled for the second shot in early February.  Sarasota county opened appointments for persons 65 and over using an online reservation system.  Because I had signed up for text messages from the county back in March, I received a text message that they were taking appointments and was able to schedule both of us before they were filled up.  The process worked very smoothly when we arrived at the County Health Department.  While there was a long line, it turned out they were people without an appointment hoping to get the vaccine  by waiting. 

    Since we had an appointment, we went to the head of the line and were in and out in approximately an hour including a 15 – 20 minute observation period after the shot.  So far we have had no major complications beyond some pain at the injection site.  I will update you when we get the second shot as I have heard that is when they expect more minor complications will occur since your body has been making antibodies to fight the virus.

    A reminder – if you haven’t already joined PD Avengers, please click here and add your name to the list of supporters.  We are hoping for 1 million supporters by 2022 and together we are fighting to END PARKINSON’S!

    I hope this post finds you healthy and not totally bored out of your mind.  Please mask up, practice social distancing and stay safe! 

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

     

      

     

  • Join PD Avengers & Let’s End PD!

    Last  month  marked the 7th anniversary of my official “you have Parkinson’s Disease” diagnosis from my first neurologist.   During the past 7 years  I’ve become very knowledgeable about PD, discovered tennis, turned into an exercise junkie to help slow the progression of my PD,  and moved to Florida.

    Meanwhile, after 200 + years Levadopa/Carbidopa, discovered 50 years ago, continues to be the main treatment for the symptoms of PD.  A lot of research has been done trying to identify the cause of PD and a number of new medications have been developed to deal with the symptoms of PD but the cure remains elusive.  The recent book “Ending Parkinson’s Disease” pointed out that PD is fast becoming  pandemic and action needs to be taken to end PD. You can read my blog post about the book here.

    Inspired by the book and it’s proposed PACT (Prevent,Advocate, Care, Treat)  a worldwide group of PD advocates have formed PD Avengers to advocate for ending Parkinson’s.  They want to unite 50 million voices world wide to prove PD matters and to build a sense of urgency to end Parkinson’s.  I have added my voice and have become a PD Avenger and I hope you will too!  You can find out more information and add your voice at PDAdvengers.com.  Together we can END PARKINSON’S!!

  • Sample Posts #4

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    At tellus at urna condimentum mattis pellentesque. Arcu non sodales neque sodales. Tincidunt ornare massa eget egestas. Ut tortor pretium viverra suspendisse potenti nullam ac tortor vitae. Vestibulum rhoncus est pellentesque elit ullamcorper dignissim. Donec adipiscing tristique risus nec feugiat in. Ut ornare lectus sit amet. Hendrerit dolor magna eget est lorem. Ipsum suspendisse ultrices gravida dictum fusce. Ultricies leo integer malesuada nunc vel risus commodo viverra. Mauris in aliquam sem fringilla. Fermentum odio eu feugiat pretium.

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    Lorem ipsum dolor sit amet consectetur adipiscing elit duis tristique. Nunc consequat interdum varius sit amet mattis vulputate enim. Faucibus et molestie ac feugiat sed lectus vestibulum mattis. Massa sed elementum tempus egestas sed sed. Nunc consequat interdum varius sit amet. Neque vitae tempus quam pellentesque nec. Cursus metus aliquam eleifend mi. Eu scelerisque felis imperdiet proin fermentum leo vel orci. Quam elementum pulvinar etiam non quam lacus suspendisse faucibus interdum. Non enim praesent elementum facilisis leo vel fringilla. Nisi vitae suscipit tellus mauris a diam maecenas sed. Lorem sed risus ultricies tristique nulla. Elementum facilisis leo vel fringilla. Ut tortor pretium viverra suspendisse potenti. Diam in arcu cursus euismod quis viverra. Mattis vulputate enim nulla aliquet porttitor. Lorem ipsum dolor sit amet consectetur adipiscing. Libero id faucibus nisl tincidunt eget nullam non. Libero nunc consequat interdum varius.

What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August!  Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

 


The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason  of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July.  Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week.  They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of  Fox Insight. The program is open  to PwP with an Android phone.  They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app.  Currently they are tracking my activity and tremor via the watch.  The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis.  The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks.  Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight  – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight.  No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

 

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

 

What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August!  Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

 


The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason  of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July.  Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week.  They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of  Fox Insight. The program is open  to PwP with an Android phone.  They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app.  Currently they are tracking my activity and tremor via the watch.  The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis.  The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks.  Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight  – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight.  No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

 

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

 

Tag: Clinical Trials

  • What I Did During My Summer Vacation (so far)!

    What I Did During My Summer Vacation (so far)!

    It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August!  Very exciting news!

    As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

     


    The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

    After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
    with Jason  of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

    Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

    Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July.  Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

    And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week.  They stopped by after Don participated in a tennis tournament in Asheville, NC.

    Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of  Fox Insight. The program is open  to PwP with an Android phone.  They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app.  Currently they are tracking my activity and tremor via the watch.  The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis.  The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks.  Click here for more information and to sign up.

    And, as always, remember to sign up for Fox Trial Finder and Fox Insight  – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight.  No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

     

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

     

  • Parkinson’s Awareness Month 2015

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

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

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

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

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

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

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

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

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

     

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