• 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.

Latest Research News

Well, setting a goal of publishing a new post within two weeks of my last post didn’t quite work. Despite my best intentions and adding a reminder to my calendar, I still missed the date by, oh let’s say 2 (OK 3) weeks.  Back in the days before retirement, I used a system called the Franklin Planner to plan out everyday, so maybe I need to do something similar now – NOT!  While it was an interesting (and expensive) planning system complete with training on how to use, fancy binders and custom calendar pages, I still missed a goal or two and I was quite happy to discard the entire system upon retirement.  But enough excuses, I’ll just chalk this one up as a learning experience and remember to not promise any deliverables.😀

What I did promise last post was that this post would cover some of the latest news about PD and I will stick to that deliverable.  One of the new blogs that I now follow is The Science of Parkinson’s .  If you haven’t already discovered this site, click on the link to view the site and sign up for posts.  This site is the first I’ve found that does a superb job of taking the latest scientific publications and breaking it down to plain, understandable english.   The author is Simon Stott, and he has been working in the field of Parkinson’s disease research for over 15 years (both in academia and biotech). 

Each month, he publishes a Monthly Research Review in addition to his posts about a single research topic.  You can view the June 2018 review here.  This month there have been several great posts about the latest research and all in a readable and understandable format.  The top story this month has been the report that researchers have found that graphene dots may prevent alpha synuclein from clumping, and even better, they appear to cause the clumps already formed to break up and disappear!    I realize I threw out some new scientific words but if you go to the article here, you will get a full description of alpha synuclein and graphene dots and more.  (At least I didn’t use the actual title of the research report – Graphene Quantum Dots Appear to Prevent α-synucleinopathy in Parkinson’s disease)

So it appears these graphene dots stop the clumping of alpha synuclein and break up the existing clumps in the mouse model of PD which is a great step forward.  As always though, we have to hope the research results are the same (or better) when they conduct clinical trials on current patients.

And speaking of clinical trials, if you haven’t signed up for the Fox Insight study, please go here and join us in the largest longitudinal study of PD and the impact it has on each patient.  If you didn’t see the Micheal J Fox interview with Jane Pauly regarding the Fox Insight study a few weeks ago, you can view it here.

In the other news category, the Parkinson’s Foundation has released it’s Parkinson’s Prevalence Project results which predicts there will be over 930,000 PD patients in the US and Canada by 2020 and 1.2 million by 2030.  They also show the prevalence by state along with many other statistics.  You can view the summary study here.  Interesting findings and this study will hopefully help our efforts for more funding for PD research.

And finally, when I contacted Simon Stott about his website, he recommended some other sites that I found interesting so I have updated my blog list page with those sites, Simon’s site and a new category of sites, PD News Aggregators. 

As always,thanks for reading.

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

 

 

 

 

 

 

Latest Research News

Well, setting a goal of publishing a new post within two weeks of my last post didn’t quite work. Despite my best intentions and adding a reminder to my calendar, I still missed the date by, oh let’s say 2 (OK 3) weeks.  Back in the days before retirement, I used a system called the Franklin Planner to plan out everyday, so maybe I need to do something similar now – NOT!  While it was an interesting (and expensive) planning system complete with training on how to use, fancy binders and custom calendar pages, I still missed a goal or two and I was quite happy to discard the entire system upon retirement.  But enough excuses, I’ll just chalk this one up as a learning experience and remember to not promise any deliverables.😀

What I did promise last post was that this post would cover some of the latest news about PD and I will stick to that deliverable.  One of the new blogs that I now follow is The Science of Parkinson’s .  If you haven’t already discovered this site, click on the link to view the site and sign up for posts.  This site is the first I’ve found that does a superb job of taking the latest scientific publications and breaking it down to plain, understandable english.   The author is Simon Stott, and he has been working in the field of Parkinson’s disease research for over 15 years (both in academia and biotech). 

Each month, he publishes a Monthly Research Review in addition to his posts about a single research topic.  You can view the June 2018 review here.  This month there have been several great posts about the latest research and all in a readable and understandable format.  The top story this month has been the report that researchers have found that graphene dots may prevent alpha synuclein from clumping, and even better, they appear to cause the clumps already formed to break up and disappear!    I realize I threw out some new scientific words but if you go to the article here, you will get a full description of alpha synuclein and graphene dots and more.  (At least I didn’t use the actual title of the research report – Graphene Quantum Dots Appear to Prevent α-synucleinopathy in Parkinson’s disease)

So it appears these graphene dots stop the clumping of alpha synuclein and break up the existing clumps in the mouse model of PD which is a great step forward.  As always though, we have to hope the research results are the same (or better) when they conduct clinical trials on current patients.

And speaking of clinical trials, if you haven’t signed up for the Fox Insight study, please go here and join us in the largest longitudinal study of PD and the impact it has on each patient.  If you didn’t see the Micheal J Fox interview with Jane Pauly regarding the Fox Insight study a few weeks ago, you can view it here.

In the other news category, the Parkinson’s Foundation has released it’s Parkinson’s Prevalence Project results which predicts there will be over 930,000 PD patients in the US and Canada by 2020 and 1.2 million by 2030.  They also show the prevalence by state along with many other statistics.  You can view the summary study here.  Interesting findings and this study will hopefully help our efforts for more funding for PD research.

And finally, when I contacted Simon Stott about his website, he recommended some other sites that I found interesting so I have updated my blog list page with those sites, Simon’s site and a new category of sites, PD News Aggregators. 

As always,thanks for reading.

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

 

 

 

 

 

 

Latest Research News

Well, setting a goal of publishing a new post within two weeks of my last post didn’t quite work. Despite my best intentions and adding a reminder to my calendar, I still missed the date by, oh let’s say 2 (OK 3) weeks.  Back in the days before retirement, I used a system called the Franklin Planner to plan out everyday, so maybe I need to do something similar now – NOT!  While it was an interesting (and expensive) planning system complete with training on how to use, fancy binders and custom calendar pages, I still missed a goal or two and I was quite happy to discard the entire system upon retirement.  But enough excuses, I’ll just chalk this one up as a learning experience and remember to not promise any deliverables.😀

What I did promise last post was that this post would cover some of the latest news about PD and I will stick to that deliverable.  One of the new blogs that I now follow is The Science of Parkinson’s .  If you haven’t already discovered this site, click on the link to view the site and sign up for posts.  This site is the first I’ve found that does a superb job of taking the latest scientific publications and breaking it down to plain, understandable english.   The author is Simon Stott, and he has been working in the field of Parkinson’s disease research for over 15 years (both in academia and biotech). 

Each month, he publishes a Monthly Research Review in addition to his posts about a single research topic.  You can view the June 2018 review here.  This month there have been several great posts about the latest research and all in a readable and understandable format.  The top story this month has been the report that researchers have found that graphene dots may prevent alpha synuclein from clumping, and even better, they appear to cause the clumps already formed to break up and disappear!    I realize I threw out some new scientific words but if you go to the article here, you will get a full description of alpha synuclein and graphene dots and more.  (At least I didn’t use the actual title of the research report – Graphene Quantum Dots Appear to Prevent α-synucleinopathy in Parkinson’s disease)

So it appears these graphene dots stop the clumping of alpha synuclein and break up the existing clumps in the mouse model of PD which is a great step forward.  As always though, we have to hope the research results are the same (or better) when they conduct clinical trials on current patients.

And speaking of clinical trials, if you haven’t signed up for the Fox Insight study, please go here and join us in the largest longitudinal study of PD and the impact it has on each patient.  If you didn’t see the Micheal J Fox interview with Jane Pauly regarding the Fox Insight study a few weeks ago, you can view it here.

In the other news category, the Parkinson’s Foundation has released it’s Parkinson’s Prevalence Project results which predicts there will be over 930,000 PD patients in the US and Canada by 2020 and 1.2 million by 2030.  They also show the prevalence by state along with many other statistics.  You can view the summary study here.  Interesting findings and this study will hopefully help our efforts for more funding for PD research.

And finally, when I contacted Simon Stott about his website, he recommended some other sites that I found interesting so I have updated my blog list page with those sites, Simon’s site and a new category of sites, PD News Aggregators. 

As always,thanks for reading.

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