• 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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Brrrr, It’s Cold!

Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego.  To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning.  Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.
 
I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football.  Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.
 
It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
  • The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
  • The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease.  Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
  • NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
  • The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
  • The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
    Parkinson’s treatment through a proactive approach to self-care.  The book is available free of charge in Ebook or print form here on the Foundation website.
  • And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders  including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
    patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
 I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here.  Please join me and 40,000+ other PwP’s supporting the search for a cure.  By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week.  Read all about and sign up here.
 
 
Happy New Year!
 
“It does not matter how slowly you go as long as you do not stop.” – Confucius
 
 

Brrrr, It’s Cold!

Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego.  To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning.  Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.
 
I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football.  Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.
 
It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
  • The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
  • The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease.  Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
  • NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
  • The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
  • The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
    Parkinson’s treatment through a proactive approach to self-care.  The book is available free of charge in Ebook or print form here on the Foundation website.
  • And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders  including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
    patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
 I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here.  Please join me and 40,000+ other PwP’s supporting the search for a cure.  By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week.  Read all about and sign up here.
 
 
Happy New Year!
 
“It does not matter how slowly you go as long as you do not stop.” – Confucius
 
 

Year: 2015

  • Brrrr, It’s Cold!

    Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego.  To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning.  Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.
     
    I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football.  Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.
     
    It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
    • The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
    • The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease.  Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
    • NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
    • The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
    • The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
      Parkinson’s treatment through a proactive approach to self-care.  The book is available free of charge in Ebook or print form here on the Foundation website.
    • And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders  including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
      patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
     I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here.  Please join me and 40,000+ other PwP’s supporting the search for a cure.  By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week.  Read all about and sign up here.
     
     
    Happy New Year!
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius