• Back Home Again…but not for long!

    First a word about the new “Resources for PD” tab above this (or any) post.  I have added a page with links to the major organizations that provide PD support.  Every one of them can provide a wealth of information for patients and caregivers and most provide both web based information or you can call their 800 number for assistance.  By no means is this a complete list and I plan to update the list as I find new sources but I hope it will be beneficial, whether you are newly diagnosed and looking for as much information as you can find or you just have a question about a new symptom.  Check it out when you get a chance. And yes the list of blogs I follow is still coming, soon I hope 🙂

    We have returned from a great trip to Colorado, Oregon and Washington to see family and friends.  During our short Colorado visit we saw daughter Holly and the grandkids, celebrated grandson Charlies 15th birthday and had lunch with my sisters and my nephew Michael and his wife, Kelsie, whom we hadn’t seen in several visits.  Michael is a wonderful nature photographer and you can check out his work at Timberline Images.  We also met other friends for breakfast, lunch, or dinner so it was a packed few days before we flew on to the Pacific Northwest.

    Upon arriving at the Seattle airport, we drove to Prineville, Oregon to meet up with our close friend Ed who has wanted us to visit for years.  He lives on a hillside with a beautiful view of the surrounding area from a large deck.  We were treated like royalty as our visit included a steak and elk dinner on the deck with some of Ed’s friends, a fun dinner at The Red Martini and a massage!  The massage was wonderful and loosened up my back and neck plus I had a good conversation with the therapist about Parkinson’s and rigidity, you know me, always spreading the word 🙂

     

    We then returned to Seattle for a fun week with our two youngest grand children Angelina and Ariana, oh, and their parents, Dale and Monica.  We had a wonderful time with the kids during the last week of summer before school started. We again were treated like royalty, enjoying many fine meals, taking the girls shopping for school clothes, and Dale and I might have hit a brew pub or two 🙂  Best of all, we had time to visit and enjoy each others company.  It was a good time and even the Seattle weather was great.

    This was my second trip across multiple time zones since my diagnosis.  Strangely, I found that gaining the two hours on the outbound trip to Colorado affected my fatigue level on the next day more than I would have expected.  I tried to take my medication every six hours on the travel day, without regard to the actual time of day but the next day I was wiped out by early evening.  Just before we left I visited the neurologist and he doubled my Mirapex dose to 1.5 mg three times a day, so that may also have been a factor. The one hour time change to the Northwest didn’t have any noticeable affect and I again tried to keep taking the medication 6 hours apart.  Flying home where I lost 3 hours did not seem to have the fatigue effect either but we didn’t have visits and dinners etc. to attend the next day so that may be the difference.  I did make sure I had my Aware in Care kit (available here from NPF) and extra medication in my carry on, just in case.

    Next week, Mara and I will attend the Michael J Fox Foundation/AbbVie Partners in Parkinson’s event in Atlanta where we will be on the panel for a breakout session entitled ‘Building Connections with Family, Friends and Community’.  Topics will include how we dealt with the diagnosis, how we communicated with family and friends and what we have done to connect with the Parkinson’s community. We are excited to participate but at the same time we are a bit nervous as we understand that they are expecting over 600 attendees!  By the way, there is still time to register for this event if you are near the Atlanta area, or for one of the six remaining events held around the country, check the website link above for details.  I will write a blog post devoted to the event and our participation on the panel so stay tuned!

  • A Year of Blogging

    Well it has been one year since the inception of this blog and an interesting year it was, as outlined in my last post.  And as promised this post will contain some nerdy, but kind of fun, information collected by Blogger during the year. Blogger is the Google platform I use to maintain the blog.  They kindly keep track of how many times a page is viewed,  the approximate location of the viewer and the ten most viewed posts among other things.

    Page views:

    The number of page views was about 2200 for the period 8/6/13 – 8/4/14 or about 180 views a month but suddenly the last post went viral!  The National Parkinson’s Foundation (NPF) mentioned my last blog post on Twitter and Facebook on Tuesday and suddenly the blog received almost 700 pageviews on 8/5/14 alone!  So now the number of views as of this writing is 3055!  Thank you NPF and welcome new readers, I hope you enjoy reading It Is What It Is.

    Reader location:

    The top ten reader locations are shown in this graphic.

     
    Not much to say about this list, as one would expect, most viewers are in the United States. The top five States are Colorado, Tennessee, Maine, Florida and California.  A number of readers from other countries are also following the blog which is pretty cool!
     
     
    Ten most viewed posts for the year:
     
     

    Of course the winner for this year is the post which was mentioned by NPF, What a Year!.  The next most popular was the post about visiting the University of Florida Movement Disorder Clinic which is carefully disguised as a post about Hanging at the Beach! Others making the cut include Cognitive Training about playing Lumosity with PD, Team about Partners in Parkison’s, the Kripalu Wellness Retreat post, the post about Staying Motivated to Exercise and Support about our visits to the local support groups.

    You can view these posts and others from the Popular Posts listed just below my profile or from the Blog Archive,located near the bottom of the right hand column.

    So there you go, some nerdy but interesting (well to me anyway) information about the blog over the past year.  Again I want to thank all of you for your support and hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease.  I plan to continue staying on top of  current Parkinson’s Disease research and I will continue to look for a clinical trial that I can join. I am quite aware of what “might” happen in the future but that doesn’t mean I have to give in, I will continue to fight and maintain a positive attitude because I believe we will beat Parkinson’s!

  • What a year!

    It’s is a time for anniversaries, first and foremost, Mara and I celebrated our 24th wedding anniversary with a trip to a cabin in the Smokies for some R and R and a wonderful dinner at a new restaurant we found nearby.  We had a great time and came home rested and relaxed in time for a nice pontoon ride on the lake for my birthday.

    Last week was also my one year anniversary as an official Person with Parkinson’s.  A lot has happened in the last 365 days which somehow included a lot of beach time!  I have researched Parkinson’s, met other PwP, both in person and on the web, took up Yoga and Tai Chi, and started this blog.  I have alarms set on my watch and my phone to remind me to open the little pill container I carry with me at all times and take my medication timely.  I have been to the University of Florida Movement Disorder Clinic to experience a multidisciplinary and patient centered approach to dealing with PD (highly recommended) and will return next winter for a follow up visit. I chronicled that visit in this blog post.

    We attended a week long retreat with about 70 other PwP and caregivers sponsored by National Parkinson Foundation at Kripalu where we had a great opportunity to share symptoms and how we were dealing with our diagnoses.  We heard from professionals who provided us with information and ideas, plus it was my first experience with yoga.  We stay in touch with many of the other attendees via email and Facebook and I highly recommend attending this retreat if you are within 5 years of being diagnosed, check out the NPF website for more information and dates for this year’s retreat. Again you can read more about it in this blog post from last year.

    The most important thing that has happened is being on the receiving end of endless support from my family, my friends, other PwP I have met, support group members, readers of this blog, and other bloggers and Twitter followers.  I can’t say thank you enough for all of the support that has flowed my way since my diagnosis.  It is amazing and I am humbled beyond words.

    If you read other blogs by PwP you will notice that we often talk of the downsides to having Parkinson’s but we also talk about how the diagnosis also opens  new doors and you meet new friends and your outlook becomes what positive actions can I take to beat this disease.  As Michael J Fox notes in this graphic, “..something is what it is and.there’s got to be a way through it”.  Again thanks to all of you for supporting me in trying to find that way and maintain a positive attitude.

    Speaking of new doors opening, in a previous post, I discussed the new Partner’s in Parkinson’s, a joint effort with the Michael J Fox Foundation and AbbVie, a drug company.  They are holding events around the country and we signed up to attend the event in Atlanta in September.  Since that post we have been contacted by the Foundation and asked to participate in a break out session called  ‘Building Connections with Family, Friends and Community’ which is focused on how the entrance/existence of PD has influenced the way we navigate and build relationships with others and how it has driven us to take action to get involved in making a difference for PD. It will be a moderated discussion with Q & A and we will be on the panel with three others with a connection to Parkinson’s.  We are looking forward to it, hopefully it will not be a soft voice day for me.  🙂

    Next week this blog will be one year old and I plan to have a short post to celebrate that anniversary on or around August 6th that will include some nerdy statistics about number of visitors and stuff like that, see you then.

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