Happy Thanksgiving Holiday!

It is a busy time of year but I wanted send along good wishes for the holiday, pass along a reminder or two and note some items of interest in the Parkinson’s community.

Reminder number one: November is National Caregivers Month. Yes the month is about over but I know that you, like me, are thankful for your care partner(s) every day of the year. Remember there are lots of resources available for care partners and one of the best, available from the Parkinson’s Foundation, is the Caring and Coping guide, written for caregivers at every stage of PD. Download load a copy at this link.

Reminder number two: Tuesday the 28th is Giving Tuesday. This is a great opportunity to make a donation to your favorite charity and, in many cases, have it matched. For example the Michael J Fox Foundation is shooting to raise $1million in 1 day with every donation matched by anonymous donors. Many other charities have similar opportunities on Tuesday, so scrape the bottom of your pocket book or wallet after Black Friday and Cyber Monday and help us find a cure for PD or the charity of your choice.

Item of interest number one: This article Neurological disorders – including Parkinson’s – are leading source of disability globally points out that PD is becoming pandemic and we must take action to find a cure. This summary is worth the few minutes it will take you to read.

Item of interest number two: The Michael J. Fox Foundation for Parkinson’s Research has launched Fox Insight — an online clinical study that empowers people with PD to partner with researchers and accelerate the development of breakthrough treatments. I have talked about Fox Insight in previous posts but, if you haven’t joined yet, now is the time, your data is needed as we work to find a cure. Click on the link above to get more information and join us.

Item of interest number three: The next World Parkinson’s Congress will be June, 2019 in Kyoto, Japan. Soaring With Hope has started a project to make origami cranes for an art installation to display at the WPC. Each crane represents a person withParkinson’s or a person impacted by Parkinson’s. They are asking each person to give their message of hope, which will be written on a crane. They have a goal of 10,000 cranes to bring to the WPC, each of them with a message of hope written on it to help raise awareness and HOPE for PD globally. Please take a minute to click on this link and add your WORDS OF HOPE, and please spread the word to get others to join in and participate. Thanks to Sharon Krischer (blogging as Twitchy Woman) for providing this information on her blog.

On this Thanksgiving day I am thankful for the support of my wonderful wife, my family, my friends and all of you who take the time to read my occasional posts. Thank you all and Happy Thanksgiving!

A Month of Change

September has been a month of changes including:

We moved from Tennessee to Florida
Our house in Tennessee suffered a catastrophic flood due to a broken pipe
Hurricane Irma also moved to Florida
I moved this blog to a new host and a new platform and
Summer left and Fall arrived

We arrived in Sarasota at the end of August after loading a POD and preparing the house in Tennessee for the next owners. We arrived just in time for the Thursday Pedaling class and Saturday tennis matches and were already starting to get in the groove again. Then we received a call from our realtor saying our home in Tennessee was flooded due to a broken pipe!

So we quickly made plans to return to Tennessee to assess the damage, leaving a few days before Hurricane Irma was due, but not early enough to beat the traffic on I-75 North where we spent 9+ hours to go our usual 5-6 hour trip the first day and almost the same for the second day. We found the house to be almost a complete remodel with water damage through out both floors. We are now in between the dry out and removal of damaged walls, ceilings, etc. and getting the estimate for repair/rebuild approved by the insurance company. I have to say that our insurance company (USAA) was quick to get someone out to the home to start the demolition and dry out process and to find a contractor for the rebuild, so hopefully, everything progresses as smoothly.

While we were in Tennessee, Hurricane Irma swung by Sarasota preventing us from returning until the roads were open and gasoline was available. Our rental here survived Irma with no problems and some friends that had to evacuate their home were able to ride out the storm in our unit while making sure our hurricane shutters were up and everything that might fly around was in the garage.

Since our return we are back to trying to get in to the exercise routine, pedaling twice a week, tennis at least twice a week, yoga and dance once a week and try to squeeze in a walk most days too. As I noted in the previous post, we saw a definite decline in my mobility and stiffness during the summer without enough exercise and I am glad to be able to up the level a bit.

Also, since we returned, I moved this blog to a new hosting site and a new blogging platform (WordPress). As a result I am slowly working through the site looking for broken links and missing photos in older posts, so don’t be surprised if a link doesn’t work or a post refers to a photo that doesn’t exist. I will keep at it and all should be functional soon.

In the meantime, if you subscribed to the posts by email or RSS, you may have gotten a repeat email of the previous posts which occurred when I updated the web address. I think this was a one time event and future emails will only be sent when I have a new post. If you aren’t subscribed but want to be, you can click on the subscribe by RSS link to the right and one of the options is to subscribe by email instead of RSS feed. Also, if you have the old address of tomspdblog.blogspot.com bookmarked, please update your bookmark to tomspdblog.com.

And the final change was Summer is now Fall, which in Florida means that the humidity will start dropping and the temperatures will be perfect for tennis and other outdoor events instead of falling leaves and snow. Sounds OK to me!

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

The Sarasota Experiment Results Are In!

As I noted in the previous post, it had been over four months since I posted anything at all and a busy four months they were. In April we decided the Sarasota experiment was a success and that we should sell our Tennessee home and move to Sarasota full time. In Sarasota I am able to pedal for Parkinson’s twice a week, play tennis two to three times a week, attend a Dance for PD class once a week along with yoga, tai chi and general exercise classes. And I don’t have to travel 45 minutes to attend any class, everything is within a 10 – 15 minute drive which makes it easy to ‘get up and go’ exercise. So I have updated the cover photo to a great beach sunset with two dolphins enjoying the view and made some modifications to my profile over there on the right.

More and more studies are showing that exercise is one of the keys to living with PD (or just living in general). While it seems like I am taking on more that I should, I find instead that the more I take on, the better I am able to deal with my PD symptoms. This has certainly proved out during the 3 months we have been in Tennessee, my exercise routine dropped to almost nothing and I can tell my symptoms are worse.

So we finished April in Sarasota with a visit from our friends Tom and Marilyn. We enjoyed sunsets on the beach, nice walks in the complex where we live, touring the Ringling estate and Selby Gardens and kayaking through the mangrove tunnels near Lido Key.

In early May we returned to Tennessee and started the process of getting the house and grounds ready to sell. We also had a visit from my brother-in-law Mike and my sister Marcia and we took a trip to the Grand Ole Opry in Nashville, a bear sighting trip through Cades Cove in the Smokies (yep we saw some bears) and a lot of fishing!

In June we worked on the home and squeezed in a trip to Bald Head Island with Dave and Shelley and Breanna and Garrett. By the middle of June we were ready to put the house on the market and we listed it on a Friday and sold it on Monday, just before the first of the summer visitors arrived! At the end of the month, Dale Monica and Angelina and Ariana arrived to celebrate the fourth of July, a birthday or two and the sale of our house. And on July 4th Ryan Sarah Julian and Trysten arrived to celebrate the holiday and spend some time on the lake.
After the first round of visitors left, Holly, Paul, Charlie and Kayla arrived for a visit at the end of July and we enjoyed the lake and took a trip up to Gatlinburg for lunch and mini golf.

We had a great time with everyone and are glad everybody got a final visit to the Lake Cottage. At the end of the month Mara and I went to Townsend to celebrate our 27th wedding anniversary and my 71st birthday. It was a great 3 days of R and R after a hectic couple of months getting ready for the house sale and visitors.

Since the Townsend trip we have been packing and deciding what to sell and what to keep. This weekend we will hold an estate sale and the house will be empty. We will stay until the 22nd since we are on the direct path for the full eclipse on the 21st. Then we will make a quick trip to West Virginia to visit granddaughter Breanna before returning to Sarasota by the 1st of September.

July 24th marked the 4 years since being diagnosed with PD and I do believe that I was doing better while maintaining my Sarasota exercise routine and I am looking forward to gearing back up to see if I notice a difference. I visited my PD doctor last week and he was pleased with my overall condition and he recommended no change in medication levels, just continue to exercise.

August 6th also marked 4 years publishing this blog and, once again I could make my usual promise that I will do better and post more. But since all that does is set high expectations for you and feelings of impending doom for me, I’m going with no promise this year. After all It Is What It Is!

Speaking of exercise, last week the NPR show The Peoples Pharmacy aired a show about Pedaling for Parkinson’s and the advantages of exercise in general. The show includes an interview with Kathy Helmuth, who is the instructor of our Pedaling class in Sarasota along with interviews with Dr. Jay Alberts who discovered the benefits of “forced exercise” for PD patients and Dr.Jordan Metzel who discusses the benefits of exercise for us all. You can download or listen to the podcast here.

So that is a condensed version of pretty much all that has been happening for the last four months. Next time I will be posting from Sarasota and, hopefully, talking about changes we have seen since getting back into a regular exercise routine. Until then, thanks for reading and for sticking around during my 4 month hiatus.

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

Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe. After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process. Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed! See you next time.

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

Tag: Clinical Trials

Beaching, Exercising and Blogging!

Last week was another great week at the beach. Our son, daughter-in-law and two granddaughters arrived on Saturday and we had a couple of great beach days and some pool time, when the weather cooperated, along with good food, good conversations and lots of just hanging out time. We managed a couple of trips to Capt Curt’s for clam chowder and celebrated Mara’s birthday at one of our favorite restaurants, Ophelia’s on the Bay. We were sorry to see them off for home in Seattle after a fun week.

Monday we attended a Parkinson’s event at the Asolo Theatre in Sarasota. The event was organized by Lynn Schramek, founder of the Parkinson’s Cafe. After getting to know everyone over coffee and cookies, we were treated to a backstage tour by Alex Suczewski that was fascinating. After a short history of the Asolo, we saw both stages, the rehearsal space, the green room, a dressing room, learned about costume design and saw the nifty way they move the sets back and forth on rails controlled by a computer. After the tour, we enjoyed a box lunch and a great presentation by actress Carolyn Michel who has been preforming at the Asolo for 25 years. After talking about her career and fielding our many questions, she performed a couple of monologues and it was amazing to see her drop right into the character, changing her voice and facial mannerisms to match. It was a wonderful event and we are looking forward to next month’s visit to the Sarasota Ballet.

On the Parkinson’s front, we are very pleased with the new medication routine. Our walk times to the same turn around point on the beach have dropped enough that we have moved the point further out. My rigidity is almost non existent most of the time and Mara has remarked that sometimes my walking speed is almost back to normal, we have even done a little jogging on the beach. The walking poles help with arm movement and walking erect. Studies continue to show that exercise is the best medication for PD, in fact, a Google search for scholarly studies using ‘Parkinsons and exercise’ produced 16,400 results, 617 in 2015 alone. My Doctor’s idea to add levadopa to my medication to reduce the motor symptoms so I would be able to exercise more seems to be paying off.A few weeks ago I was asked to be a guest blogger for HealthiVibe, LLC and my article was posted today and can be seen here. HealthiVibe is a firm helping design clinical trials with the premise that patients should play a more instrumental and active role in the design process and also throughout the patient journey, a topic I have blogged about in the past. I was excited to be able to add my voice to the need for changes in the clinical trial process. Which reminds me, don’t forget to sign up for the Fox Trial Finder, it’s easy and YOU are needed! See you next time.

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

February 19, 2015
At the Beach — Again!

I am writing this from the deck of a beautiful home overlooking the Atlantic Ocean on Bald Head Island, NC. Yep, at the beach again!! More about how we got here later in this post.

I have looked at several more clinical trials but again find that I don’t qualify because I am already on medication. It seems to me that communication between Movement Disorder Specialists (MDS) or Neurologists and clinical trial operators could increase trial participants. If the Doctors were aware of the trials being conducted nearby, they could then offer their newly diagnosed patients the opportunity to particpate in the trial before they prescribed a medications. Of course another issue is travel, most of the trials that I have tried to join are at least 200 miles away and the travel costs are usually not covered. In her latest blog post, Soania Mathur MD states “…close to 85% of all clinical trials are delayed due to recruitment difficulties and a shocking 30% fail to recruit a single subject.” The post goes on to discuss both the logistical and the lack of knowledge issues I have discussed above. The Michael J Fox Trial Finder website does a great job of listing all of the trials in my home radius of 300 miles and they notify me if a new one is added that meets the criteria but the newly diagnosed need to know where to look. Perhaps one or more of the National organizations can develop a simple brochure that can be supplied to MDS and Neurologists for them to hand out or make available to patients. It might be a start?

I was asked this week to be a PatientsLikeMe Research Ambassador. PatientsLikeMe is an online support group I belong to and I had applied to be a member of a research advisory committee they were forming. While I wasn’t selected for the advisory group I was asked to be a Research Ambassador. Per the email ..”Like the Team of Advisors, our Research Ambassadors are being asked to commit to a program that’s designed to put you in the driver’s seat of making research better.” As an Ambassador, I will get special communications each month for the rest of the year about new research initiatives, information about data being collected and how it will be used, and use my blog and other social avenues to share this information with the Parkinson’s community. I have participated in a couple of their research projects already, including the one where I did the voice test over the phone to see if they can track the progress of my Parkinson’s. Sounds interesting and I am looking forward to participating.

We had a great visit with my daughter Holly and grandchildren Charlie and Kayla. The weather was great until the last evening so we got in a lot of boating, tubing, swimming, fishing and stand up paddle boarding along with side trips to the Ripley’s Believe It or Not museum and a couple of rounds of mini golf.

Kayla turned out to be the fisherperson extraordinaire hooking a couple of nice catfish and a bunch of sunfish from the dock. Charlie loved being on the water and riding the tube. Holly and Kayla both enjoyed stand up paddle boarding so much the first time, they went back for more before leaving for home. It was a great visit and a good time was had by all.

We are enjoying our time at the beach in Bald Head Island. The island is reachable by ferry from Southport, NC and once you are here, you travel by foot, bike or golf cart. We have been lucky to spend a week here for the past several summers with my stepson David and his wife Shelly and the two grand kids Breanna and Garrett. This year Breanna is in MN so this is the first time we have been here without her. Garrett always brings along a friend or two, this year he brought along 4 high school buddies and they are having a blast. Dave and Shelly’s friends Mario and Missy have also joined us for the week. It is a great place to just relax, read books, take long walks on the beach and watch the World Cup. I am trying to catch up with all of the magazines I haven’t read since we returned from Florida in early March and produce this blog post. Looks like the blog post will make it, we’ll see about the magazines.

Our friends Mary Ann and Don live nearby in Wilmington, NC so they came over for a day and we had a great time, we hadn’t seen them for almost 2 years so we had a lot of catching up to do. We enjoyed a nice lunch with them and a couple of ‘slow’ rides around the island as one of our golf carts is not super speedy. 🙂

Next up is a visit from my son Ryan and his wife Sarah and grandson Julian and his half brother Trysten for the Fourth of July, look for more fun on the lake in the next post.

June 20, 2014

Thanksgiving

A Month of Change

The Sarasota Experiment Results Are In!

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Other Posts

Where in the world is Tom

It’s Parkinson’s Awareness Month – 9th Edition

We Survived Hurricane Ian!

Nine Years

Tag: Clinical Trials

Beaching, Exercising and Blogging!

At the Beach — Again!