• 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

  • Dancing and Singing at the Beach!

    It’s been a busy couple of weeks and I know everyone is waiting for an update from the beach 🙂 As I mentioned in the last post we were planning a Kripalu mini-reunion with Joel and Melisa and Marcia and Erwin and we were able to get together for lunch and then a nice visit while sitting on the beach.  As Marcia said later, “..it felt like connecting with very close family.” We all caught up on what has happened since October 2013 which, of course, included what medications we were taking, comparing notes on doctor visits, etc.  Marcia and Erwin along with another couple from our Kripalu visit are staging the first Pocono FoxTrot 5K for Parkinson’s with the proceeds going to the Michael J Fox Foundation.  If you are going to be in the Pocono’s area June 20th, you can sign up for the 5K run/walk, the 1 mile community walk or the Kids 1 mile run/walk at this link.
     

    A few days later, we attended our second Parkinson’s Cafe event, a backstage tour of the Sarasota Ballet.  This tour included a chance to watch the ballet master conduct training for about 30 cast members and students which was fascinating, they just flew across the room executing jumps and turns like they had wings!After the tour, we participated in a PD in Motion class, a dance/exercise class for PD patients which is conducted every week by the Neuro Challenge Foundation here in Sarasota. The program was started in NYC and has expanded nationwide.  As you can see, most of the exercises were done sitting down and involved moving legs, arms, and torso.  We really enjoyed it and we attended the next class and will catch a couple more before we leave the beach.

    And this week we attended a choral singing class, also sponsored by the Neuro Challenge Foundation.  Called the Off Key Choir about 45-50 of us sang some Irish tunes since it was St Patrick’s day, and, by the end we did it in 4 part harmony! This was a great way to learn breathing and speech techniques to help with the soft voice of PwP.  It was great fun and we are happy Merrily and Robert Manthey told us about it and invited us to attend.

     
    We met Merrily at the Parkinson’s Cafe event and she told us how a year ago, she was in a wheelchair but no longer needs it after participating in the exercise programs provided by the Sarasota Memorial Hospital Healthfit Gym.  In fact her story was featured in the February 2015 edition of Sarasota Magazine.  Merrily is an outstanding example of how exercise can help fight PD.  Mara and I are convinced that increasing my exercise time has reduced my symptoms and I’m looking at other exercise programs that might provide additional benefit, you can expect to hear more about that project in the next post.
     
    We also had a nice visit with Tom and Marilyn, our friends from Colorado, the weather was great and we got in our long walks every morning and beach time every afternoon and took in a play at the Aslo Theater.  Good Times, Good Times!
     
    Recently Sage Bionetworks announced an app called mPower, as part of the Apple iPhone Research Kit.  Currently only available for the iPhone, mPower will gather information daily from users which will feed into a database for analysis.  At the same time the Michael J Fox Foundation announced Fox Insight, an online clinical trial for both PwP’s and those without PD who will complete a series of surveys every 90 days regarding their health, symptoms, medications, etc. You can link it to your Fox Trial Finder profile during the sign up process and soon you will also be able to  link to the mPower app information.  It is easy to enroll and takes only about 20 – 30 minutes to complete the surveys plus you can print a  report of the results to take along on Doctor visits.
     
    Until next time..oh wait I forgot to remind you to sign up for Fox Trial Finder and now Fox Insight!
     
     “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

IT IS WHAT IT IS!

Parkinson’s Awareness Month Is….Almost Over

Yep, here it is almost the end of April and the end of my third year going through Parkinson’s Awareness Month (April 1 – 30), and Parkinson’s Awareness Week (April 18 – 24th) and World Parkinson’s Day (April 11th (also Dr Parkinson’s birthday).  And today I’m wondering shouldn’t every month, week, or day be Parkinson Awareness month, week or day?  I don’t know about you but I’m aware of my Parkinson’s every day, and I don’t think I can get away with ignoring my PD from May to March waiting for the next Parkinson’s Awareness Month.  Changing my social media icons doesn’t stop my Parkinson’s and, if we can’t keep the need for a cure in front of everyone all year, how do we expect to secure funding for necessary research, clinical trials etc. Does Congress only meet one month a year?  OK maybe so, but they did proclaim April National Parkinson’s’ Disease Month this year. Do I only need to write one blog post a year (or 30 posts during the month of April, or 7 posts during Awareness Week?  I don’t think setting aside a month, week or day is the answer!

OK, I’ll take my tongue out of my cheek (or is it put my tongue in?) but I have to say I feel better getting that off my chest.  We can’t pretend that PD doesn’t exist the other 11 months of the year, just like we can’t pretend the same for Autism (also April) or Alzheimer’s (November) or Breast Cancer (October) just to name a few.  We have made tremendous strides in the past 5 years in PD research because we work to gather the support of family, friends and strangers, not just in April but year around.  So, if you didn’t get a chance to change your social icon, or participate in a fundraiser or attend a special PD event this month, you can still do something to help next month, or the month after, or……  Let’s not let up because Parkinson’s Awareness Month is over.

Our East Tennessee Support Group held it’s annual walk on April 16th, it was a beautiful day, we had a great turn out and so far we have raised over $12,500, 100% of which goes to fund research at the seven major Parkinson’s organizations through the National Parkinson’s Unity Walk held April 22, 2016.  The National total so far is over $1.2 million.  I want again to thank all of my supporters this year, together we will find a cure!

Speaking of the seven major organizations, if you haven’t heard, there is some welcome consolidation going on among the these groups.  PAN (Parkinson’s Action Network), primarily our voice on the hill, has become the Policy unit of the Michael J Fox Foundation.  In addition, NPF (National Parkinson’s Foundation) and PDF (Parkinson’s Disease Foundation) have signed an agreement to merge during this year.  I feel like this is a good thing, all of the organizations have similar goals – Find A Cure- and they don’t need to be in competition.

So we are back from Florida and have been attending the Silver Sneakers Program and using the weight equipment at the local gym.  We are shooting to maintain at least one hour per day/5 days per week and we have hit it most weeks so far.

We have rented a town home in Sarasota for a year to give us a chance to experience the area in all seasons, not just when it is cold in TN and warm there.  So we will go down and come back up through out the summer/fall seasons plus spend most of the winter there. No plans at the moment to sell the Lake Cottage, but we keep hearing that too many people wait too long to make a decision about moving and end up somewhere they don’t enjoy.  We know at some point we need a single story residence and we like the PD community in Sarasota and this opportunity popped up the last week of our stay so we jumped on it.  Watch this space for more information about how it all works out.

Couple of last minute items:
1) Partners In Parkinson’s will offer a live video feed on Saturday May 14th.  Click here for more information and to sign up.  A great opportunity if you haven’t been able to attend a local event.

This year the Fourth Triennial World Parkinson’s Congress will be held in Portland OR, September 20 – 23.  Early registration ends July 5th.  Mara and I are attending and serving as volunteers.  Check out the event schedule and register here.

Finally, I saw this great info graphic on  Parkinson’s Journey, a blog I follow by Sherri Woodbridge. This is part of a larger info grapic from the American Parkinson Disease Association.  I think it hits the exercise nail right on the head!

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

Other Posts

IT IS WHAT IT IS!

Parkinson’s Awareness Month Is….Almost Over

Yep, here it is almost the end of April and the end of my third year going through Parkinson’s Awareness Month (April 1 – 30), and Parkinson’s Awareness Week (April 18 – 24th) and World Parkinson’s Day (April 11th (also Dr Parkinson’s birthday).  And today I’m wondering shouldn’t every month, week, or day be Parkinson Awareness month, week or day?  I don’t know about you but I’m aware of my Parkinson’s every day, and I don’t think I can get away with ignoring my PD from May to March waiting for the next Parkinson’s Awareness Month.  Changing my social media icons doesn’t stop my Parkinson’s and, if we can’t keep the need for a cure in front of everyone all year, how do we expect to secure funding for necessary research, clinical trials etc. Does Congress only meet one month a year?  OK maybe so, but they did proclaim April National Parkinson’s’ Disease Month this year. Do I only need to write one blog post a year (or 30 posts during the month of April, or 7 posts during Awareness Week?  I don’t think setting aside a month, week or day is the answer!

OK, I’ll take my tongue out of my cheek (or is it put my tongue in?) but I have to say I feel better getting that off my chest.  We can’t pretend that PD doesn’t exist the other 11 months of the year, just like we can’t pretend the same for Autism (also April) or Alzheimer’s (November) or Breast Cancer (October) just to name a few.  We have made tremendous strides in the past 5 years in PD research because we work to gather the support of family, friends and strangers, not just in April but year around.  So, if you didn’t get a chance to change your social icon, or participate in a fundraiser or attend a special PD event this month, you can still do something to help next month, or the month after, or……  Let’s not let up because Parkinson’s Awareness Month is over.

Our East Tennessee Support Group held it’s annual walk on April 16th, it was a beautiful day, we had a great turn out and so far we have raised over $12,500, 100% of which goes to fund research at the seven major Parkinson’s organizations through the National Parkinson’s Unity Walk held April 22, 2016.  The National total so far is over $1.2 million.  I want again to thank all of my supporters this year, together we will find a cure!

Speaking of the seven major organizations, if you haven’t heard, there is some welcome consolidation going on among the these groups.  PAN (Parkinson’s Action Network), primarily our voice on the hill, has become the Policy unit of the Michael J Fox Foundation.  In addition, NPF (National Parkinson’s Foundation) and PDF (Parkinson’s Disease Foundation) have signed an agreement to merge during this year.  I feel like this is a good thing, all of the organizations have similar goals – Find A Cure- and they don’t need to be in competition.

So we are back from Florida and have been attending the Silver Sneakers Program and using the weight equipment at the local gym.  We are shooting to maintain at least one hour per day/5 days per week and we have hit it most weeks so far.

We have rented a town home in Sarasota for a year to give us a chance to experience the area in all seasons, not just when it is cold in TN and warm there.  So we will go down and come back up through out the summer/fall seasons plus spend most of the winter there. No plans at the moment to sell the Lake Cottage, but we keep hearing that too many people wait too long to make a decision about moving and end up somewhere they don’t enjoy.  We know at some point we need a single story residence and we like the PD community in Sarasota and this opportunity popped up the last week of our stay so we jumped on it.  Watch this space for more information about how it all works out.

Couple of last minute items:
1) Partners In Parkinson’s will offer a live video feed on Saturday May 14th.  Click here for more information and to sign up.  A great opportunity if you haven’t been able to attend a local event.

This year the Fourth Triennial World Parkinson’s Congress will be held in Portland OR, September 20 – 23.  Early registration ends July 5th.  Mara and I are attending and serving as volunteers.  Check out the event schedule and register here.

Finally, I saw this great info graphic on  Parkinson’s Journey, a blog I follow by Sherri Woodbridge. This is part of a larger info grapic from the American Parkinson Disease Association.  I think it hits the exercise nail right on the head!

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

Other Posts

Tag: Partner’s in Parkinson’s

  • Parkinson’s Awareness Month Is….Almost Over

    Parkinson’s Awareness Month Is….Almost Over

    Yep, here it is almost the end of April and the end of my third year going through Parkinson’s Awareness Month (April 1 – 30), and Parkinson’s Awareness Week (April 18 – 24th) and World Parkinson’s Day (April 11th (also Dr Parkinson’s birthday).  And today I’m wondering shouldn’t every month, week, or day be Parkinson Awareness month, week or day?  I don’t know about you but I’m aware of my Parkinson’s every day, and I don’t think I can get away with ignoring my PD from May to March waiting for the next Parkinson’s Awareness Month.  Changing my social media icons doesn’t stop my Parkinson’s and, if we can’t keep the need for a cure in front of everyone all year, how do we expect to secure funding for necessary research, clinical trials etc. Does Congress only meet one month a year?  OK maybe so, but they did proclaim April National Parkinson’s’ Disease Month this year. Do I only need to write one blog post a year (or 30 posts during the month of April, or 7 posts during Awareness Week?  I don’t think setting aside a month, week or day is the answer!

    OK, I’ll take my tongue out of my cheek (or is it put my tongue in?) but I have to say I feel better getting that off my chest.  We can’t pretend that PD doesn’t exist the other 11 months of the year, just like we can’t pretend the same for Autism (also April) or Alzheimer’s (November) or Breast Cancer (October) just to name a few.  We have made tremendous strides in the past 5 years in PD research because we work to gather the support of family, friends and strangers, not just in April but year around.  So, if you didn’t get a chance to change your social icon, or participate in a fundraiser or attend a special PD event this month, you can still do something to help next month, or the month after, or……  Let’s not let up because Parkinson’s Awareness Month is over.

    Our East Tennessee Support Group held it’s annual walk on April 16th, it was a beautiful day, we had a great turn out and so far we have raised over $12,500, 100% of which goes to fund research at the seven major Parkinson’s organizations through the National Parkinson’s Unity Walk held April 22, 2016.  The National total so far is over $1.2 million.  I want again to thank all of my supporters this year, together we will find a cure!

    Speaking of the seven major organizations, if you haven’t heard, there is some welcome consolidation going on among the these groups.  PAN (Parkinson’s Action Network), primarily our voice on the hill, has become the Policy unit of the Michael J Fox Foundation.  In addition, NPF (National Parkinson’s Foundation) and PDF (Parkinson’s Disease Foundation) have signed an agreement to merge during this year.  I feel like this is a good thing, all of the organizations have similar goals – Find A Cure- and they don’t need to be in competition.

    So we are back from Florida and have been attending the Silver Sneakers Program and using the weight equipment at the local gym.  We are shooting to maintain at least one hour per day/5 days per week and we have hit it most weeks so far.

    We have rented a town home in Sarasota for a year to give us a chance to experience the area in all seasons, not just when it is cold in TN and warm there.  So we will go down and come back up through out the summer/fall seasons plus spend most of the winter there. No plans at the moment to sell the Lake Cottage, but we keep hearing that too many people wait too long to make a decision about moving and end up somewhere they don’t enjoy.  We know at some point we need a single story residence and we like the PD community in Sarasota and this opportunity popped up the last week of our stay so we jumped on it.  Watch this space for more information about how it all works out.

    Couple of last minute items:
    1) Partners In Parkinson’s will offer a live video feed on Saturday May 14th.  Click here for more information and to sign up.  A great opportunity if you haven’t been able to attend a local event.

    This year the Fourth Triennial World Parkinson’s Congress will be held in Portland OR, September 20 – 23.  Early registration ends July 5th.  Mara and I are attending and serving as volunteers.  Check out the event schedule and register here.

    Finally, I saw this great info graphic on  Parkinson’s Journey, a blog I follow by Sherri Woodbridge. This is part of a larger info grapic from the American Parkinson Disease Association.  I think it hits the exercise nail right on the head!

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

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