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.

When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.

Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.

We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!

July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!

Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.

This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.

I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.

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

Year: 2015

Anniversaries abound!

When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.

Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.

We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!

July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!

Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.

This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.

I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.

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

August 8, 2015
What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August! Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July. Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week. They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of Fox Insight. The program is open to PwP with an Android phone. They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app. Currently they are tracking my activity and tremor via the watch. The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis. The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks. Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight. No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

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

July 20, 2015
On the Road Again!

Yes,we are on the road again. We are working our way to San Francisco to attend a wedding which will also be another 3M reunion. I say working our way because we left home at 8:45 AM for a 10:50 flight to Houston for our connection to arrive in San Francisco around 5pm. But the Houston flight was delayed and we would miss our connection. Sam, a very helpful United employee, was able to get us on a US Air flight to Philadelphia leaving at 3pm and connecting to a San Francisco flight arriving at 9pm.

So, with plenty of time to kill, we took a walk around the airport and on the way back to our gate I see that the Philadelphia flight was delayed and we would again miss our connection! So back to Sam at the United desk where they were able to get us on a 3:55pm US Air flight to Charlotte for a connection arriving in San Francisco at 8:30.

With more time to kill, we decided to get some lunch and on the way back to the gate we see the Charlotte flight is delayed 30 minutes! This meant,if we left at the new scheduled time, we will have 20 minutes to change terminals. A small challenge for me and Dr. Parkinson but all that walking we have been doing paid off and we are in the air, bouncing our way to San Francisco.

Once we get there,we will have a new challenge,finding the little house we are renting in Bolinas, north of San Francisco,in the dark!

Well it is the next day and we are sitting in the little house we rented looking out at the ocean as you can see in the picture. We finally arrived here around midnight and this morning we took a nice walk down to town for some breakfast and a walk on the beach. Good times, good times.

After the wedding and 3M reunion we are going to Sonoma for a couple of days where we will meet up with son Ryan and his wife Sarah for some wine and beer tasting and probably some fine dining. More good times.

This week I finally completed the long promised list of blogs and bloggers I follow. Click on the tab at the top of the page and check it out. Next I hope to work on the post about exercise. Last week the results of a longitudinal study were released showing the benefits of exercise for Parkinson’s patients. Here is a portion of the press release:

SAN DIEGO – Regular exercise and increasing physical activity is associated with a slower decline in quality of life in Parkinson’s disease (PD) patients, according to a study released today at the 19th International Congress of Parkinson’s Disease and Movement Disorders. This study evaluated 2,940 patients from 20 sites affiliated with the National Parkinson Foundation Quality Improvement Initiative. The cohort was assessed using the Parkinson’s Disease Questionnaire (PDQ-39), and patients were measured at baseline, 1 year, and 2 year follow up appointments. Those who were classified as non-exercisers at baseline and began to exercise after their initial visit had significantly less worsening of PDQ-39 than non-exercisers. Ultimately, the study found that increasing physical activity greater than 2.5 hours of exercise per week is associated with a slower decline in total PDQ-39 scores.

Michael Okun, Professor of Neurology at the University of Florida Center for Movement Disorders and Neurorestoration states, “This study makes clear that everyone with Parkinson’s should be exercising. This longitudinal study of patients selected without exclusions shows that patients suffer from delaying starting their exercise program. It doesn’t seem to matter what they do, they benefit from just getting up and out and from moving.” Okun adds, “This study adds to mounting evidence that exercise is good and sooner is better than later.”

I can certainly attest to the benefits of exercise and we are trying to average at least 5 hours a week so maybe I’ll get double the benefit! Hopefully that post won’t take as long as the blog list! In the meantime, check out some of the blogs on my list while you are waiting for my next post and don’t forget to sign up for Fox Trial Finder and the Fox Insight trial. Remember, they need control subjects too, not just Parkinson’s patients so sign up!

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

June 19, 2015