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.

Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego. To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning. Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.

I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football. Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.

It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples

The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease. Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
Parkinson’s treatment through a proactive approach to self-care. The book is available free of charge in Ebook or print form here on the Foundation website.
And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.

I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here. Please join me and 40,000+ other PwP’s supporting the search for a cure. By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week. Read all about and sign up here.

Happy New Year!

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

Tag: Travel

Brrrr, It’s Cold!
Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego. To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning. Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.

I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football. Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.

It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
- The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
- The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease. Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
- NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
- The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
- The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
  Parkinson’s treatment through a proactive approach to self-care. The book is available free of charge in Ebook or print form here on the Foundation website.
- And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
  patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here. Please join me and 40,000+ other PwP’s supporting the search for a cure. By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week. Read all about and sign up here.

Happy New Year!

“It does not matter how slowly you go as long as you do not stop.” – Confucius
January 9, 2015
The PD Southern Symposium and Victory Summit

The PD Southern Symposium and Victory Summit

We had a wonderful time in Spartanburg SC at the Parkinson’s Disease Southern Symposium. I have tried to summarize what went on during this three day event below. Thanks go out to Lisa Cox, Linda Morgan, Ken Cater and Bill Wilkins, the team that conceived and planned a very successful event.

The first day consisted of opening ceremonies followed by exhibits and lunch at the Spartanburg County Library, a dance class at Ballet Spartanburg Studios and a screening of the documentary Capturing Grace by Dave Iverson. On our walk over to the library we met Steve Quam who has bicycled across the US 3 times (and motorcycled once) since he was diagnosed with PD in support of the Davis Phinney Foundation! He is also a musician and provided music before lunch was served.

Capturing Grace by Dave Iverson is an inspiring film which followed a group of PwP’s in Brooklyn as they trained for and presented a ballet/dance production. Watching the difference dance made in their symptoms was fascinating and the finale was great. I highly recommend you see it if you get a chance.

In the evening we attended a talk by Bill Geist, CBS Sunday Morning Correspondent and PwP, also sponsored by the Spartanburg County Library. He spoke about hiding his diagnoses from family, friends and co-workers for several years, finally ‘coming out’ on the show. We finished the busy day with a dinner where our panelists from the Atlanta Partner’s in Parkinson’s meeting were reunited. We enjoyed catching up with India Pender Martin during dinner.

After dinner Colonel Michael “Rich” Clifford, former astronaut joined Bill Giest at the podium to discuss living with Parkinson’s. Colonel Clifford was diagnosed with PD at age 42 but was cleared to fly by his NASA commander. He flew one more mission which included the first American spacewalk while docked to the Russian MIR space station in 1996. The historic space mission is the subject of a documentary called “The Astronaut’s Secret” which explores his career as an astronaut and how he and NASA kept his disease a secret for more than fifteen years.

Day two included time to peruse the exhibitors, a Support Group Luncheon hosted by the Parkinson’s Association of the Carolinas that included more music by Steve Quam, and a motivational presentation by John Bauman on the topic “Inspired by Parkinson’s: How to Have an Amazing Life in the Face of Life-Changing Events”.

We also heard from Dr. Michael Okun MD, Director of the Center of Movement Disorders and Neurorestoration at the University of Florida. He is a dynamic speaker and took questions from the audience about PD and finished with a quick summary of new research. Thanks to NPF who provided attendees with a free copy of his book “10 Secrets to Living Better with Parkinson’s”.

Our final activity for the day was to gather in the rotunda of “The George” a building nearby for about 45 minutes singing old favorites. It was a great hearing our singing amplified by the natural acoustics of the rotunda.

Day three was the Davis Phinney Foundation Victory Summit held at the TD Convention Center in Greenville, SC. The morning presentations included building your Parkinson’s Toolkit (eat right and exercise), the need for daily exercise (the only prescription with unlimited refills), cognitive change and non-motor symptoms (exercise body and mind to impact your mood and wellbeing), and research (sign up for Fox Trial Finder and participate in a clinical trial). Each presentation was made by leading Movement Disorder Specialists and a Physical Therapist and were informative and on point.

After lunch Local Hero awards were presented to Lisa Cox and Linda Morgan for their PD advocacy. This was followed by Moments of Victory, a presentation by Davis Phinney. He talked about his diagnoses, how DBS helped his tremor and why he believes in celebrating moments of victory with his characteristic arms above the head in a V. He pointed out we are a tribe and not alone in our fight against PD. It was an inspirational and motivating presentation that had the 600+ attendees on their feet, arms over their heads and ready to celebrate every victory.

We then attended a presentation on Medication Management and Strategies where we heard about the various medications used to treat PD symptoms. The final session we attended was Clinical Trials: Propelling Research Forward a panel discussion about current research. One topic we discussed was the need for clinical trial participants to support ongoing research, a topic that I am passionate about. Both patients and researchers recognize that changes are needed to the current process but that won’t happen overnight and in the meantime we need clinical trials and participants. If we don’t participate, we will continue to rely on a drug discovered almost 50 years ago that only treats our symptoms. Okay I’ll get off my soapbox for now, but expect to see more about this issue in future posts.

So that was the Victory Summit, a full day of information sharing and motivating sessions that made you know we are not alone and that research continues in the search for a cure. I highly recommend attending the Victory Summit if you get an opportunity. More information can be found on the Davis Phinney Foundation website.

Oh yes, I promised to mention my beer brewing adventure. I opened my first bottle of this batch today; it is a brown ale and was pretty tasty. This was my second attempt and it went a bit smoother than the first try but it is a process that uses the kitchen for about 4 hours and most of the pots and pans in the house!

At the Victory Summit we reconnected with Claudia Marshall, Research Engagement Assistant at the Michael J Fox Foundation, whom we met in Grand Rapids. We discussed the trial we are participating in and also how we can improve clinical trial participation. I’ll have more about that in the next post – see you then.

November 20, 2014
Clinical Trial Needs, Southern Symposium and NOLA!

I have previously posted about the need for clinical trial participants. I have joined Fox rial Finder which has a large database of trials and provides a list of possible research opportunities based on your desired parameters (distance from home, # of years with PD, etc.). Mara and I recently matched up for a trial being conducted at the University of Alabama Sparks Center, Mara as a control and I as a PD patient. The trail is called LRRK2 and Other Novel Exosome Proteins in Parkinson’s Disease (that’s a mouthful!) LRRK2 is one of the genetic markers closely associated with development of Parkinson’s Disease. The official description is as follows:

“This proposal seeks to 1) determine whether there are biomarkers associated with Parkinson’s disease (PD) susceptibility and/or progression in exosome-proteomes derived from PD patients versus controls, and 2) to determine if LRRK2 expression and/or phosphorylation are significantly lowered in the exosomes of individuals treated with the potent LRRK2 inhibitor sunitinib (a multi-kinase inhibitor compound), to establish an assay for on-target effects for future LRRK2 inhibitor clinical trials.”

Sounds pretty intimidating but all that is required now is giving urine and blood samples and Mara will be given the PD Screening questionnaire and I will be tested to verify my PD diagnoses. They expect it will take about 1.5 hours and we have an appointment next week, so I will provide an update after the visit.

Speaking of clinical trials, Michael J Fox Foundation has a need for PwP’s to participate in BioFIND, a study also looking for PD biomarkers. Participation in BioFIND requires only two visits to a clinical site in a two-week period. The visits will include a combination of clinical assessments, sample collection and written surveys. With the aim to complete recruitment as soon as possible, BioFIND needs volunteers now. Go to this link to find out if you are eligible and if there is a site near you. (I am not eligible as I haven’t been diagnosed for more than 4 years)

We are in Spartanburg SC for the Parkinson’s Disease Southern Symposium which starts tomorrow and runs for 4 days. Based on the agenda, it looks like we will be busy! We are looking forward to meeting old friends and making new friends. The agenda includes a screening of Capturing Grace, the documentary by Dave Iverson and attending the Davis Phinney Foundation Victory Summit, an all day event about living with Parkinson’s.

We had a great time in NOLA (New Orleans LA), attending a wedding and then spending a few days with friends touring the town. The weather was perfect and we enjoyed the sights, sounds, and food of the French Quarter which included a beignet and coffee at Cafe Du Monde. Our favorite spot for breakfast was TOAST a small restaurant just a block from the house we rented in Uptown. They had a great mural on the wall as you can see in this photo.

I know this is the second post without discussing my experiences brewing beer but I promise it will make the next one, it should be ready to taste early next week. See you then.

November 13, 2014

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

Brrrr, It’s Cold!

The PD Southern Symposium and Victory Summit

The PD Southern Symposium and Victory Summit

Clinical Trial Needs, Southern Symposium and NOLA!