April is Parkinson’s Awareness Month and this Thursday, April 11th, is World Parkinson’s Day. This year, our cycling group at the YMCA decided to do something to increase awareness of PD. We are moving our usual Thursday Pedaling for Parkinson’s class from from the cycling class room to the lobby of the Y. We have invited all of the local neurologists and Movement Disorder Specialists,along with local Parkinson’s groups and the media to come and see what Pedaling for PD is all about. So if you are in the Sarasota area this week, stop by the Evalyn Sadlier Jones YMCA at 8301 Potter Park Dr at 10am to see Pedaling for Parkinson’s in action.

Those of you who have been following this blog for very long know that I feel that this program has slowed the progression of my PD. When I miss a class or two I have seen a noticeable change in the time my medication lasts. The medication seems to wear off sooner than usual and take longer to ‘kick in’ after I take a new dose. I know I have pushed exercise over and over in this blog but I can’t emphasize it enough. There are many opportunities to exercise besides cycling or playing tennis – you just need to find one you like (or dislike the least) and stick with it for a month and see if you don’t agree, exercise is the key ingredient to fight PD.

Speaking of medication, I was doing great on the new regime of two Rytary and 1/2 a tablet of Mirapex 5 times a day until a couple of weeks ago when it suddenly stopped working so well. I would take the 1st dose of the day and it worked perfectly but when I took the second dose it would sometimes have the opposite effect, causing me to walk slowly with limited arm movement as though I was completely unmedicated. This would last up to 2 hours and then I experienced “wearing on” instead of wearing off as the meds finally kicked in.

So I emailed my Dr and while waiting for his response did what many of us do, researched the internet for other people who have experienced the same effect and then started experimenting with different dosages and the timing of the dose. I am getting pretty good results reducing the Rytary to 1 for doses 2 and 4 but I will keep you posted as this saga continues. In the meantime today my ninety day supply of meds arrived, I need a shelf just for the Rytary 😀

Happy New Year!

Well maybe it should read Happy Chinese New Year! It’s February already and I’m just getting to my first post for the new year! I hope everyone had a great holiday season. We had a great time with family over the Christmas/New Year holiday which included a trip to Disney World to celebrate New Year’s Eve.

During the busy holiday season, we tried to keep up with our exercise schedule, cycling two days a week, playing as much tennis as possible and attending the Dance for PD class every week. I continue to enjoy playing tennis and even played in a men’s double tournament here in our community finishing in the middle of the pack.

January included a visit to my Neurologist. While I am doing well I was noticing that my medication wearing OFF anywhere from 30 – 60 minutes before the next dose, particularly when the next dose occurred while I was exercising. We discussed two options, change the timing so I would take more Sinemet or try Rytary, an extended release version of Levodopa/Carbidopa.

We decided to try the Rytary and I was given a sample to take once a day in the morning for a week. After the initial week I found that ON time was at least 30 – 60 minutes longer and some days I noticed no wearing off at all between doses.

So I reported my findings back to my Doctor and we decided to go ‘full bore’ and replace my Sinemet tablets with the Rytary on a every 4 hour schedule. So far I am happy with the results with only occasional OFF periods, usually because I didn’t take them on schedule 🙂 I’ll keep you posted as I continue this new regimen.

On the research front, if you are interested what’s coming up in 2019, I highly recommend you read “The Road Ahead: Parkinson’s Research in 2019” by Simon Stott over at the Science of PD blog. He expects that several clinical trials will have some data to report during the year and several promising projects will start. Click here to read.

One last note, I have added a link on the website to a document I prepared recently for a friend of a friend who had just been diagnosed with PD. It contains my thoughts about what to do after that initial diagnoses, lots of links to sites I like, and my thoughts / recommendations about exercise, finding a Movement Disorder Specialist, etc. Click on the link in the Now What? box at the top right to view, print or download.

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

Rallying, Parkinson’s Movement Website, Care Partners Month, and Giving Tuesday!

Yep, as you can tell by the title, this a catch up post lightly touching on many topics. For various reasons, it has been tough to find time for writing but I have a chance today so will try to cover all of these topics (and maybe more) in this post. Let’s get started!

Rallying to the Challenge – 2018

As you might recall from my last post, we had just attended the Grand Challenges in PD meeting in Grand Rapids MI. This is a two day meeting that brings together scientists, clinicians and people with Parkinson’s to explore the latest in Parkinson’s disease research. The meeting is hosted by the Van Andel Research Institute and includes a parallel meeting for PwP’s hosted by Van Andel and The Cure Parkinson’s Trust. This is one of the few meetings that brings us all together and gives the Parkinson’s community a chance to provide input impacting ongoing and planned research. Even better, we got to say hello to many old friends while making many new friends as the meeting progressed. At the end of the meeting, the Cure Parkinson’s Trust presented the Tom Isaacs Award to two outstanding individuals, Professor Bas Bloem of the Netherlands who founded ParkinsonNet, an innovative PD care program and Simon Stott, who publishes the Science of PD Blog about current research in PD which I have mentioned in previous posts.

It was a great meeting and you can read more about it here and here. Next year’s meeting is set for August 21 and 22 in case you would like to attend, click here for more information.

Parkinson’s Movement Website

The Cure Parkinson’s Trust sponsors the Parkinson’s Movement website which is maintained by PwP’s for PwP’s. This website has recently had a total makeover and I highly recommend you add it to your list of sites to visit on a regular basis. The site has information about on going research and provides opportunities to get involved in research or share your insights. They have a section called Hype vs Hope where they ‘fact check’ recent news stories, claims of a cure, etc. They also have have a large list of PD advocates listed along with their country of residence, the topics they advocate for and other information. Check it out here.

Care Partners Month

November is National Care Partners Month and I know that you, like me, are thankful for your care partner(s) everyday of the year. But this is a good time to remind you and your care partner that there are a lot of resources available for care partners including the Caring and Coping guide written for care partners for any stage of PD and available for the Parkinson’s Foundation. You can download a copy or order a paper copy here

Giving Tuesday

Tuesday the 27th 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, after successfully raising one million dollars last year, the Michael J Fox Foundation is shooting to raise two million dollars this year 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.

(And Maybe More)

Ben Stecher who writes the Tomorrow Edition blog has started a 9 part series about the Search for a Cure. The first part was just published and can be viewed here. Ben has traveled the world interviewing researchers, medical professionals and others about what they are doing and what the impact might be on the search for a cure, what the cure might look like and when it might happen. So, another recommendation, sign up to follow Ben’s blog and his search for the cure.

Dr Ray Dorsey at the University of Rochester in New York is conducting a web based study to see if using a computer with a webcam and microphone will provide sufficient information for patient followup. The entire study is web based and takes about 10 – 15 minutes. It requires a computer with webcam and the Chrome browser but it is quick and easy and a chance for you to participate in a clinical trial without leaving your house. You can get more information and participate in the trial at this website.

OK that wraps it up for this post. I hope everyone has an enjoyable Thanksgiving Holiday!

“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

Year: 2015

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
Increasing the Exercise Routine

Our first week at the beach is already over. 🙁 Last Saturday we attended the Parkinson’s Symposium sponsored by The Neuro Challenge Foundation and Sarasota Memorial Hospital. This is an annual event with 500+ attendees and included talks by recognized PD experts followed by a Q & A session afterwards. In between the talks we did two mini exercise sessions which included some voice exercises from the Loud portion of the Big and Loud program. We were joined at the meeting by Joel and Melissa whom we first met at Kripalu and then again here at the beach last year.

At the meeting we met Brad and Lynn Schramek who founded the Parkinson’s Cafe for the purpose of providing social, cultural and intellectual interaction for people with Parkinson’s disease and their families. This years events include a visit to the Asolo Repertory Theatre and a visit to the Sarasota Ballet. Both agendas look interesting so we have signed up to attend them both.

This week NPR (among others) talked about the benefits of exercise for Parkinson’s and so did all of the speakers at the Symposium. Since we arrived we have upped our exercise routine to include at least an hour walking plus Qi Gong and Tai Chi. During my recent Doctor visit, we discussed my lack of arm swing while walking and he suggested using walking poles to improve my posture and arm swing while walking. So this week I took delivery of a pair of Green Zen Nordic walking poles from York Nordic and they definitely help with the arm swing, posture and pace. I also started the Sinemet (Cardidopa/levodopa) at the beginning of the week and
I have noticed reduced rigidity and shuffle along with the improved walk times over last
year’s beach visits.

Also this week we have signed on to be Fox Trial Finder Ambassadors, which I’m sure comes as a surprise to regular readers 🙂 We are looking forward to helping spread the word about the importance of participating in clinical trials at support groups, events, informal meetings, and any other opportunities we get, like this blog.

This weekend, our granddaughters (oh and their parents) arrive from Seattle for a week of beach fun so I’m thinking it will be another fun and busy week! Thanks for reading.

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

February 7, 2015
Patient Centric Care in Action

For the last few months, Mara and I have been discussing changing neurologists with the idea of being seen by a Movement Disorder Specialist (MDS). I was seen by a MDS when we went to U of FL last year we felt that it was too far of a drive for regular appointments. The Vanderbilt Movement Disorder Clinic in Nashville is also an National Parkinson Foundation (NPF) Center of Excellence, they conduct a lot of Parkinson’s research and it is a two hour drive instead of ten, so we decided that was where I would go. So this week I met with Dr. Thomas Davis, a MDS and clinical researcher and Director of the Vanderbilt Movement Disorder Clinic. It was a very positive experience and we were quite impressed with Dr Davis and the Vanderbilt Movement Disorder Clinic staff.

After a simple check in process that took all of 5 minutes and only required my electronic signature on the usual forms, that’s right, I did not have to fill out any health history forms, who to contact, etc.! I had barely sat down when a nurse called me into an interview room where she took my BP, weight, and medical history once again without me having to fill out a form! She then took me to the examination room where we met Dr. Davis.

During the meeting with Dr Davis we discussed my PD history, what medication I was on and how it was working, what other symptoms I was having plus he performed the usual PD tests, finger and toe tapping, walking, etc. He also tested my cognitive skills and once again I passed! We then discussed my medication routine and he recommended I start taking levadopa/cardidopa along with a reduced dose of Mirapex four times a day instead of three. We were happy with this recommendation as it seemed the Mirapex has not been as effective in reducing my rigidity and I am taking the maximum dose. He also noted that exercise is still the best prescription for PwP and reducing the rigidity and other symptoms will allow me to up the exercise routine. The appointment lasted about 50 minutes and we came away feeling that he and the staff cared about me as a person and a patient and we had made the right decision to transfer to Dr Davis.

We also met with Kelly Arney, research outreach coordinator, whom I had been in contact with last year about a clinical trial sponsored by NPF to track the effects of treatment. I did not qualify then because the trial required participants to be seen by the Clinic, but now that I am a patient, I should be able to participate beginning with my next visit at the end of April. We also discussed upcoming clinical trials with both Dr Davis and Kelly and they will contact me if I meet the qualifications.

When I checked out, they had me sign up for access to their electronic health record system which gives me access to all of my records and a way to email Dr Davis. Again the process was simple and an employee walked me though the sign up at a terminal in the waiting area, then gave me full access to the system.

The NIH defines patient-centered care as follows: “health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs and preferences and solicit patients’ input on the education and support they need to make decisions and participate in their own care.” The care we received at the Vanderbilt Medical Center Movement Disorder Clinic certainly fit the NIH definition.

And the positive experiences continued because Friday we checked into our ‘home away from home’ a villa on Siesta Key! Yes that’s right, we are at the BEACH! We will be attending a Parkinson’s symposium on Saturday and I also plan to sign up for the Big and Loud program while we are here so I will have plenty to blog about next time. Until then don’t forget to sign up for the Fox Trial Finder, we all have a stake in finding a cure.

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

January 31, 2015

World Parkinson’s Day – 2019

Happy New Year!

Rallying, Parkinson’s Movement Website, Care Partners Month, and Giving Tuesday!

Rallying to the Challenge – 2018

Parkinson’s Movement Website

Care Partners Month

Giving Tuesday

(And Maybe More)

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

Year: 2015

Beaching, Exercising and Blogging!

Increasing the Exercise Routine

Patient Centric Care in Action