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

I Am Still Here!

I think I may have set a new record for days (months!) between posts! It’s been over 75 days since my last post on March 25th. I’m happy to report that the long delay was not due to health problems, well maybe a bit of apathy, one of those non motor symptoms PwP’s sometimes suffer, but to a busy schedule.

Here’s a quick summary:

March – closed on new house, start moving.

April – Son Dale, daughter-in-law Monica and Granddaughters Angeline and Ariana arrive, they helped us finish the move from the townhouse to the new house, what a lucky coincidence, they were a great help.

April – home in Tennessee is FINALLY back on the market, just 7 months after the flood.

April – we attended the PD Expo in Sarasota and performed with the PD in Motion dance group.

April – Son Darrin arrives, again a great help, he painted two walls and some furniture for us.

April – short trip to Orlando to meet up with fellow PwP Ted and his wife Jan, enjoyed a nice day in Epcot.

April – after much negotiation, we accept offer on Tennessee home.

May – inspection of Tennessee home reveals more problems and we start another agonizing negotiation.

May – finally agree to reduce price of Tennessee home to facilitate the sale and get it over with.

May – in Memphis for Grandson Garrett’s graduation from Rhodes College. He graduated Summa Cum Laude and will attend Wake Forest Medical School next.

May – painted the great room in new house in anticipation of some new furniture delivered on the 23rd.

May – left Sarasota for Colorado, Arizona and California to attend graduations and visit friends.

May – closed on sale of Tennessee home!

May – Attended Grandson Charlie’s high school graduation, what a delightful ceremony. I have never seen him happier than he was on graduation day!

May – visited with friends and relatives in the Denver area.

June – Arrived in Aspen to visit friends and we got them excited about playing tennis – it is interesting to play at 8100 feet above sea level!

June – Arrived in Sierra Vista, AZ to visit friends

Coming up June 9th – off to San Diego to visit son Ryan, daughter in law Sarah and Grandson Julian who will also be graduating high school next week.

You may have noticed that there is no mention of a trip to NYC for the Parkinson’s Unity Walk in April. With all of the problems with the Tennessee house along with the move into the new house and the upcoming travel, I decided to lower my stress level a bit and opted out of the Patient Advocacy Group.

And of course, we continued to keep up our exercise routine as much as possible, playing tennis 2 -3 times a week and cycling twice a week along with the PD in Motion class. So there you have it, all the excuses I could think of for why I haven’t posted in the last 75 days or so. By the way, this delay does not set the record for not posting, that dubious record was set last year when I went 126 days between April and August.

About two months ago, I felt that my medication was wearing off about 30 – 45 minutes before the next dose. I tried a one week experiment increasing my Sinemet to 2 pills 4 times per day which eliminated the problem for the most part. So I emailed my Doctor in Nashville (no, I haven’t changed to a local doctor yet) who agreed to the change. So it’s been almost five years with only two changes to my medication and I firmly believe continuing to exercise is the key. In fact, we are traveling with our tennis rackets and have played tennis almost everyday on this trip. Our tennis coach in Sarasota had recommended we purchase new rackets that would fit our grip and our game so this has been a good opportunity to play with the new rackets and get comfortable with them before we return to Sarasota on June 18th.

That brings things up to date for now, I will start working on my next post soon where I want cover some of the latest news about Parkinson’s Disease research. The plan is to publish that post in the next two weeks. I hope that setting a goal will make it happen!

One last note – It Is What It Is was recently named one of 10 Parkinson’s Blogs to Keep you Fit and Positive by EverydayHealth.com. I am honored to be included on this list with several of the bloggers that I already follow and some new ones that I will be adding to my list.

Thanks for reading.

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

The Saga Continues!

Wow what an interesting month. Believing our home in Tennessee would be ready to put back on the market by the first of March, we flew to Knoxville to meet with the contractor’s quality control person, approve the work and put the home back on the market. When we arrived at the home, we discovered it was a long way from completion! To say we were disappointed would be an understatement for sure. The quality control person was just as surprised as we were and started calling people to find out why it wasn’t done. This unleashed a series of phone calls and emails with everyone pointing fingers at someone else because it was not their fault. Then to add insult to injury, the water heater gave out and leaked on the new floor, requiring them to pull up part of the floor and dry it out before laying new flooring and replacing the water heater.

After much back and forth the new date was set to the 17th of March but on the 15th I got a call from the project manager to let me know he has fired the crew that was working on the house and hired a new crew that would start on the 19th so the new finish date will be the 23rd, but I’m guessing that won’t happen either. (UPDATE: received call that home is ready for walk through on Monday the 26th!) What a long and winding road!

In the meantime, thinking it was about over, we have been home shopping here in Sarasota and found the perfect home for us at a great below market price. We put in an offer which was accepted and we are set to close March 30th! The home includes some of the furniture which will allow us to set up shop immediately while we wait for the proceeds of the Tennessee sale to purchase the finishing touches. Luckily our son and daughter in law and two grandchildren arrive on Sunday the 1st of April and they will help us make the move. Angelina, the 13 year old grand daughter is ready to organize the move and placement of items while Ariana, the 11 year old, said she would do anything we needed as long as there were snacks.

With all that is happening we have continued our exercise routine of tennis, spin bike, gym, dance and more tennis. Mara is playing tennis almost every day while I play at least three times a week. Our peddling instructor, Kathy, has embraced the high intensity interval training (HIIT) model that has recently been shown to improve symptoms better by pushing our heart rates into the peak zone (85% of max) during each interval. We have been getting quite the workout the past few months with HIIT on Tuesdays and aerobic base and endurance work along with a bit of HIIT on Thursdays.

April is Parkinson’s Awareness month and we will be attending/participating in a couple of events during the month. There will be a day long PD Expo here in Sarasota and our PD in Motion dance class will be performing a routine we have been rehearsing each Monday during class. I continue to have two left (or maybe two right?) feet but it is another enjoyable hour of exercise each week and Lynn, our instructor, just smiles as I bumble my way around trying to remember which right foot to use.

I have been asked to join a Patient Advisory Council for a Pharma company and we will hold our first meeting the day before the Unity Walk in Central Park on April 26th. For more information about the Unity Walk and how you can support us, click here.

This week we attended the Partners in Parkinson’s event in Fort Lauderdale, FL sponsored by Michael J Fox Foundation & AbbVie . We attended this event in Atlanta last year and came away with new information and new friends as reported in a previous post, On the Road Again. Since we were in Florida, we thought we would attend the Ft Lauderdale event to find out what’s new, make some new friends, and catch up with Claudia Marshall who heads up the Fox Trial Finder (FTF) Ambassador program and get some pointers on our new roles as FTF Ambassadors.

This year’s event followed the same format at last year with the morning panel sessions covering:

The Many Faces of Parkinson’s Disease – Moderator Dave Iverson and the four panelists explored how their lives have changed since their PD diagnoses. Each of the panelists discussed how they approached telling family, friends and coworkers, and where they turned for more information about PD, among other topics.
Seeing a Movement Disorder Specialist: What to Know, Ask and Expect – This panel included Bob Harmon and his wife Cecily. Bob is also a FTF Ambassador whom I met at the Sarasota meeting a few weeks ago. They were interviewed by Dr Stuart Isaacson, a local Movement Disorder Specialist. It was a great session with Dr Isaacson asking Bob a series of questions about his symptoms just as if it was a real appointment. When Bob indicated that mornings are difficult as he takes his last dose of medications at 9pm, Dr Isaacson recommended a change to the timing of his medications to help alleviate the problem. They also discussed acting out of dreams, bladder urgency and other non motor symptoms. After each question Dr Isaacson offered suggestions for new medication or timing of medication or other solutions Bob could take to reduce the impact of the symptom. He even conducted the usual tests like tapping feet and fingers and watching him walk across the stage. And like the speakers at the Sarasota meeting, Dr Isaacson also reinforced the need for regular exercise. Once again, this was great example of why you should see a Movement Disorder Specialist if at all possible.
Parkinson’s Research: The Road Ahead – Moderator Dave Iverson and the panel discussed the new drugs recently released (Rytary, the extended release levodopa and Duopa, the intestinal gel levodopa), plus what’s coming up such as an inhaler to provide dopamine quickly, new advancements in DBS, and genetic research among other topics. They also pointed out that recent research has shown that regular exercise is beneficial and slows down the progression of PD.

The afternoon sessions included the breakout sessions:

Living Well with Parkinson’s – conducted by The Davis Phinney Foundation which provides a holistic approach based on exercise and diet that provides lifelong benefits.
Building Connections with Family, Friends and Community – moderated by Dave Iverson, the panelists in this session discussed personal relationships, how they deal with PD and what they have done to promote awareness about PD.
I’m Still Wondering About – an opportunity to ask the experts questions that weren’t covered during the morning sessions.

Once again, this was an extremely informative event that presented timely information to an audience hungry to learn more about PD.
The resource fair provided opportunities for participants to meet with local south Florida representatives of the NPF, PAN, and PDF along with MJF and to meet with local providers of PD related medical care such as BIG and LOUD. And we met with Claudia and had an opportunity to further discuss the FTF Ambassador program and watch the FTF Ambassadors in action as many attendee’s stopped by their table for information about FTF.

As happened at the last event, we added several new members to our ‘world wide’ support group. One of our table mates grew up in Colorado so in addition to comparing notes about our PD, we discussed all things Colorado. Another table mate had just moved to Florida to help care for his father who has PD and he was very interested in all of the information we received during each session.

We also ran into a couple we had met at Kripalu in October, 2013, Marcia and Erwin Guberman. They have been visiting in Florida for several weeks and will be in the Sarasota area this weekend so we hope to hold a mini-reunion with them and Melissa Wenig and Joel Gordon our Sarasota friends who we also met at Kripalu. And what would a meeting be without seeing Bill Wilkerson from our Atlanta panel, it seems he follows us everywhere :). We congratulated him on being recently named this year’s recipient of the Alan Bonander Humanitarian Award which he will receive at the National Parkinson’s Unity Walk in April in New York City.

It was a great event (again) and we highly recommend (again) attending a Partner’s in Parkinson’s event if one is held near you. You can check the 2015 locations and register on the PIP Site.

Next week we will attend another Parkinson’s Cafe event at the Sarasota Ballet and we have guests coming from Colorado for some beach time. Until next time, if you haven’t signed up for Fox Trial Finder you can do it here and if you have signed up take time to check your trial matches or update your profile at the same link.

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

Tag: Travel

Partners in Parkinson’s – The Sequel
This week we attended the Partners in Parkinson’s event in Fort Lauderdale, FL sponsored by Michael J Fox Foundation & AbbVie . We attended this event in Atlanta last year and came away with new information and new friends as reported in a previous post, On the Road Again. Since we were in Florida, we thought we would attend the Ft Lauderdale event to find out what’s new, make some new friends, and catch up with Claudia Marshall who heads up the Fox Trial Finder (FTF) Ambassador program and get some pointers on our new roles as FTF Ambassadors.

This year’s event followed the same format at last year with the morning panel sessions covering:
- The Many Faces of Parkinson’s Disease – Moderator Dave Iverson and the four panelists explored how their lives have changed since their PD diagnoses. Each of the panelists discussed how they approached telling family, friends and coworkers, and where they turned for more information about PD, among other topics.
- Seeing a Movement Disorder Specialist: What to Know, Ask and Expect – This panel included Bob Harmon and his wife Cecily. Bob is also a FTF Ambassador whom I met at the Sarasota meeting a few weeks ago. They were interviewed by Dr Stuart Isaacson, a local Movement Disorder Specialist. It was a great session with Dr Isaacson asking Bob a series of questions about his symptoms just as if it was a real appointment. When Bob indicated that mornings are difficult as he takes his last dose of medications at 9pm, Dr Isaacson recommended a change to the timing of his medications to help alleviate the problem. They also discussed acting out of dreams, bladder urgency and other non motor symptoms. After each question Dr Isaacson offered suggestions for new medication or timing of medication or other solutions Bob could take to reduce the impact of the symptom. He even conducted the usual tests like tapping feet and fingers and watching him walk across the stage. And like the speakers at the Sarasota meeting, Dr Isaacson also reinforced the need for regular exercise. Once again, this was great example of why you should see a Movement Disorder Specialist if at all possible.
- Parkinson’s Research: The Road Ahead – Moderator Dave Iverson and the panel discussed the new drugs recently released (Rytary, the extended release levodopa and Duopa, the intestinal gel levodopa), plus what’s coming up such as an inhaler to provide dopamine quickly, new advancements in DBS, and genetic research among other topics. They also pointed out that recent research has shown that regular exercise is beneficial and slows down the progression of PD.
The afternoon sessions included the breakout sessions:
- Living Well with Parkinson’s – conducted by The Davis Phinney Foundation which provides a holistic approach based on exercise and diet that provides lifelong benefits.
- Building Connections with Family, Friends and Community – moderated by Dave Iverson, the panelists in this session discussed personal relationships, how they deal with PD and what they have done to promote awareness about PD.
- I’m Still Wondering About – an opportunity to ask the experts questions that weren’t covered during the morning sessions.
Once again, this was an extremely informative event that presented timely information to an audience hungry to learn more about PD.
The resource fair provided opportunities for participants to meet with local south Florida representatives of the NPF, PAN, and PDF along with MJF and to meet with local providers of PD related medical care such as BIG and LOUD. And we met with Claudia and had an opportunity to further discuss the FTF Ambassador program and watch the FTF Ambassadors in action as many attendee’s stopped by their table for information about FTF.

As happened at the last event, we added several new members to our ‘world wide’ support group. One of our table mates grew up in Colorado so in addition to comparing notes about our PD, we discussed all things Colorado. Another table mate had just moved to Florida to help care for his father who has PD and he was very interested in all of the information we received during each session.

We also ran into a couple we had met at Kripalu in October, 2013, Marcia and Erwin Guberman. They have been visiting in Florida for several weeks and will be in the Sarasota area this weekend so we hope to hold a mini-reunion with them and Melissa Wenig and Joel Gordon our Sarasota friends who we also met at Kripalu. And what would a meeting be without seeing Bill Wilkerson from our Atlanta panel, it seems he follows us everywhere :). We congratulated him on being recently named this year’s recipient of the Alan Bonander Humanitarian Award which he will receive at the National Parkinson’s Unity Walk in April in New York City.

It was a great event (again) and we highly recommend (again) attending a Partner’s in Parkinson’s event if one is held near you. You can check the 2015 locations and register on the PIP Site.

Next week we will attend another Parkinson’s Cafe event at the Sarasota Ballet and we have guests coming from Colorado for some beach time. Until next time, if you haven’t signed up for Fox Trial Finder you can do it here and if you have signed up take time to check your trial matches or update your profile at the same link.

“It does not matter how slowly you go as long as you do not stop.” – Confucius
March 1, 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

Latest Research News

I Am Still Here!

The Saga Continues!

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: Travel

Partners in Parkinson’s – The Sequel

Beaching, Exercising and Blogging!

Increasing the Exercise Routine