• 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.

My Blog List

Below, in no particular order, is a list of Parkinson’s Disease blogs that I follow grouped by general headings. By no means is this a complete list of PD blogs, I find more all the time, so I will update this list occasionally with new sites.  As far as I know, all of these blogs are active as of February, 2020. Updates marked with (new).

Parkinson’s Organizations

Parkinson’s Today Blog   (National Parkinson Foundation)
Fox Feed   (Michael J Fox Foundation)
The Cure Parkinson’s Trust (UK)
Parkinson’s Disease Foundation
Brian Grant Foundation Blog
Davis Phinney Foundation
Parkinson’s UK on Medium    (new)

Medical Professionals

Parkinson’s Secrets  by Dr Michael Okun
University of Florida Center for Movement Disorders
Patients Like Me  a online support group
Jon Palfremans Blog  from The Journal of Parkinson’s Disease.
Unshakeable MD  by Dr. Soania Mathur (NEW)
Designing A Cure Dr. Mathur’s personal blog
Both Sides Now  From Parkinson’s Researcher to Parkinson’s Patient by Dr. Alice Lazzarini
Defeat Parkinson’s by Dr. DeLong
Yoga Dopa  by Kaitlyn Roland PhD, a yogini with a passion to help people live well with PD
Science of Parkinson’s by Simon Stott, PD researcher
The Parkinson’s Report by Hannah Grassie
The Tomorrow Edition by Ben Stetcher, a great site with interviews with leading PD researchers

Blogs by Persons with Parkinson’s

Tremors in the Universe  by Robert Baittie
Hiyaitsfiona.Blog  by Fiona Purchase of Scotland. Her husband Martin has Parkinson’s
PD Gladiators Combating Parkinson’s Disease With Vigorous Exercise
Off and On  by Peter Dunlap-Shohl who is also a great cartoonist and writes for the
North West Parkinsons Foundation
Shake Rattle & Roll  An insider’s view of Parkinson’s Disease and DBS by Kate Kelsall
Shaky Paws Grampa Parkinson’s Resources from A Patient Perspective by Kirk Hall
PD Plan 4 Life  by Jean Burns and Sheryl Jedlinski who both have PD
Living Well with Parkinson’s Disease  also by Sheryl Jedlinski
Stepping Forward Life with Young Onset Parkinson’s Disease by Byron Roberts
Chronicles Of A Dystonia Muse by Pamela
Studio Foxhoven The Art and Writing of Terri Reinhart, a PD patient
I’ve Got the Hippy Shakes  by Howard Moore blogging about PD, Music and more
The Perky Parkie by Allison Smith
Parkinson’s Humor by Yuma Bev
A Soft Voice in a Noisy World  Dealing and healing with Parkinson’s Disease by Karl Robb
The PD Gardener
Parkinson’s Journey..You Are Not Alone by Sheryl Woodbridge
444 Parkinson’s Traveler by Marcus Cranston MD
Twitchy Woman by Sharon Krischer
One Voice by Dr Jon Stamford
Isreal Robledo by Isreal Robledo
The Crooked Path by Corey King
Journey with Parkinson’s by Prof. Frank Church

Parkinson’s News Aggregators

These sites provide a daily or weekly list of news items about Parkinson’s Disease

Parkinson’s News Today (new)

My Blog List

Below, in no particular order, is a list of Parkinson’s Disease blogs that I follow grouped by general headings. By no means is this a complete list of PD blogs, I find more all the time, so I will update this list occasionally with new sites.  As far as I know, all of these blogs are active as of February, 2020. Updates marked with (new).

Parkinson’s Organizations

Parkinson’s Today Blog   (National Parkinson Foundation)
Fox Feed   (Michael J Fox Foundation)
The Cure Parkinson’s Trust (UK)
Parkinson’s Disease Foundation
Brian Grant Foundation Blog
Davis Phinney Foundation
Parkinson’s UK on Medium    (new)

Medical Professionals

Parkinson’s Secrets  by Dr Michael Okun
University of Florida Center for Movement Disorders
Patients Like Me  a online support group
Jon Palfremans Blog  from The Journal of Parkinson’s Disease.
Unshakeable MD  by Dr. Soania Mathur (NEW)
Designing A Cure Dr. Mathur’s personal blog
Both Sides Now  From Parkinson’s Researcher to Parkinson’s Patient by Dr. Alice Lazzarini
Defeat Parkinson’s by Dr. DeLong
Yoga Dopa  by Kaitlyn Roland PhD, a yogini with a passion to help people live well with PD
Science of Parkinson’s by Simon Stott, PD researcher
The Parkinson’s Report by Hannah Grassie
The Tomorrow Edition by Ben Stetcher, a great site with interviews with leading PD researchers

Blogs by Persons with Parkinson’s

Tremors in the Universe  by Robert Baittie
Hiyaitsfiona.Blog  by Fiona Purchase of Scotland. Her husband Martin has Parkinson’s
PD Gladiators Combating Parkinson’s Disease With Vigorous Exercise
Off and On  by Peter Dunlap-Shohl who is also a great cartoonist and writes for the
North West Parkinsons Foundation
Shake Rattle & Roll  An insider’s view of Parkinson’s Disease and DBS by Kate Kelsall
Shaky Paws Grampa Parkinson’s Resources from A Patient Perspective by Kirk Hall
PD Plan 4 Life  by Jean Burns and Sheryl Jedlinski who both have PD
Living Well with Parkinson’s Disease  also by Sheryl Jedlinski
Stepping Forward Life with Young Onset Parkinson’s Disease by Byron Roberts
Chronicles Of A Dystonia Muse by Pamela
Studio Foxhoven The Art and Writing of Terri Reinhart, a PD patient
I’ve Got the Hippy Shakes  by Howard Moore blogging about PD, Music and more
The Perky Parkie by Allison Smith
Parkinson’s Humor by Yuma Bev
A Soft Voice in a Noisy World  Dealing and healing with Parkinson’s Disease by Karl Robb
The PD Gardener
Parkinson’s Journey..You Are Not Alone by Sheryl Woodbridge
444 Parkinson’s Traveler by Marcus Cranston MD
Twitchy Woman by Sharon Krischer
One Voice by Dr Jon Stamford
Isreal Robledo by Isreal Robledo
The Crooked Path by Corey King
Journey with Parkinson’s by Prof. Frank Church

Parkinson’s News Aggregators

These sites provide a daily or weekly list of news items about Parkinson’s Disease

Parkinson’s News Today (new)

My Blog List

Below, in no particular order, is a list of Parkinson’s Disease blogs that I follow grouped by general headings. By no means is this a complete list of PD blogs, I find more all the time, so I will update this list occasionally with new sites.  As far as I know, all of these blogs are active as of February, 2020. Updates marked with (new).

Parkinson’s Organizations

Parkinson’s Today Blog   (National Parkinson Foundation)
Fox Feed   (Michael J Fox Foundation)
The Cure Parkinson’s Trust (UK)
Parkinson’s Disease Foundation
Brian Grant Foundation Blog
Davis Phinney Foundation
Parkinson’s UK on Medium    (new)

Medical Professionals

Parkinson’s Secrets  by Dr Michael Okun
University of Florida Center for Movement Disorders
Patients Like Me  a online support group
Jon Palfremans Blog  from The Journal of Parkinson’s Disease.
Unshakeable MD  by Dr. Soania Mathur (NEW)
Designing A Cure Dr. Mathur’s personal blog
Both Sides Now  From Parkinson’s Researcher to Parkinson’s Patient by Dr. Alice Lazzarini
Defeat Parkinson’s by Dr. DeLong
Yoga Dopa  by Kaitlyn Roland PhD, a yogini with a passion to help people live well with PD
Science of Parkinson’s by Simon Stott, PD researcher
The Parkinson’s Report by Hannah Grassie
The Tomorrow Edition by Ben Stetcher, a great site with interviews with leading PD researchers

Blogs by Persons with Parkinson’s

Tremors in the Universe  by Robert Baittie
Hiyaitsfiona.Blog  by Fiona Purchase of Scotland. Her husband Martin has Parkinson’s
PD Gladiators Combating Parkinson’s Disease With Vigorous Exercise
Off and On  by Peter Dunlap-Shohl who is also a great cartoonist and writes for the
North West Parkinsons Foundation
Shake Rattle & Roll  An insider’s view of Parkinson’s Disease and DBS by Kate Kelsall
Shaky Paws Grampa Parkinson’s Resources from A Patient Perspective by Kirk Hall
PD Plan 4 Life  by Jean Burns and Sheryl Jedlinski who both have PD
Living Well with Parkinson’s Disease  also by Sheryl Jedlinski
Stepping Forward Life with Young Onset Parkinson’s Disease by Byron Roberts
Chronicles Of A Dystonia Muse by Pamela
Studio Foxhoven The Art and Writing of Terri Reinhart, a PD patient
I’ve Got the Hippy Shakes  by Howard Moore blogging about PD, Music and more
The Perky Parkie by Allison Smith
Parkinson’s Humor by Yuma Bev
A Soft Voice in a Noisy World  Dealing and healing with Parkinson’s Disease by Karl Robb
The PD Gardener
Parkinson’s Journey..You Are Not Alone by Sheryl Woodbridge
444 Parkinson’s Traveler by Marcus Cranston MD
Twitchy Woman by Sharon Krischer
One Voice by Dr Jon Stamford
Isreal Robledo by Isreal Robledo
The Crooked Path by Corey King
Journey with Parkinson’s by Prof. Frank Church

Parkinson’s News Aggregators

These sites provide a daily or weekly list of news items about Parkinson’s Disease

Parkinson’s News Today (new)