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.

Tag: Travel

Parkinson’s Disease Southeast Symposium Coming Soon!

We are on the road to New Orleans for a wedding and the biannual 3M reunion (Mara, Marilyn and Mary Ann), but I wanted to write a quick post about the Parkinson’s Disease Southern Symposium to be held November 13th through the 16th in Spartanburg, South Carolina.

To quote from their brochure, “From November 13 through November 16, researchers, physicians, those living with Parkinson’s disease and caregivers are joining together to advocate awareness about the disease, its affect on the whole person, and issues related to its diagnosis, improved treatment options and better care..” You can view the entire brochure here and even more information is available on their website.

Mara and I will be attending and we urge those of you in the Southeast to attend all or some of this event which will include a talk by Dr Michael Okun, Director of the University of Florida Center for Movement Disorders and Neural Restoration on Friday and The Davis Phinney Foundation Victory Summit on Saturday in Greenville, SC. The events are free but some, like the Victory Summit, require registration which you can do on the website. Many of the events are at the Marriott hotel and they are offering a discount on rooms if booked by October 28th with no deposit required at this link. We hope to see you there!

With a little creative travel planning for this trip, we are AT THE BEACH in Biloxi, MS where we had a nice picnic dinner with a glass of wine and a beautiful sunset. Life is good!

October 24, 2014
On The Road…Again!

Mara and I attended the Partners in Parkinson’s event in Atlanta recently, along with an estimated 650+ other patients with Parkinson’s and their loved ones. We were also honored to serve as panelists during one of the breakout sessions.

Our day started with meeting a couple from Knoxville as we walked to the convention center. We introduced ourselves and agreed to stay in contact since they had not yet found a support group. After getting registered, we enjoyed the complimentary breakfast with a couple from Atlanta and soon selected a table to sit at for the morning presentation, joining a father and daughter from the area. We had already added six people to our support group and the day was young!

Three main topics were covered in the morning moderated by longtime journalist Dave Iverson, a Parkinson’s patient himself, who serves as contributing editor for the The Michael J. Fox Foundation. Each topic was followed by Q & A from the audience. The first topic was The Many Faces of Parkinson’s Disease. Dave questioned three Parkinson’s patients about their diagnoses and the path their lives have taken since, reinforcing the fact that this disease impacts everyone differently. As Dave said “If you have seen one person with Parkinson’s, you have seen one person with Parkinson’s.”

Next up was Seeing a Movement Disorder Specialist: What to Know, Ask and Expect. A Movement Disorder Specialist MDS is a neurologist who has received additional training in PD and other disorders. One of the cool things you can find on the Partners in Parkinson’s website is a searchable database to help you find a movement disorder specialist near you.

Dr. Stewart Factor, Director of the Emory University Movement Disorder Clinic, conducted an “appointment” with a PD patient and his wife. It was an interesting, informative session prompting many of us to realize that our initial consultation may not have been filled with as much information about PD that he was covering.

The final topic was Parkinson’s Research: The Road Ahead where Dave questioned three experts involved in clinical trials and PD research. This was an informative session that engendered many questions from the audience including when to start levodopa, diet, new drugs in the pipeline, clinical trials and others.

After lunch, the breakout sessions were offered twice so you could attend two different sessions. The sessions were Living Well with Parkinson’s, presented by The Davis Phinney Foundation; I’m Still Wondering About…, an opportunity to ask additional questions; and Building Connections with Family, Friends and Community, the one we participated in.You could also browse the Resource Fair where over 20 local organizations and care providers offered information for PD patients.Since we were involved in both of our sessions, we couldn’t attend any of the others but I did hear a lot of positive response about The Davis Phinney presentation.

Our panel included Bill Wilkins, diagnosed 8 years ago and very active in the Parkinson’s community through his organization, The Wilkins Parkinson’s Foundation, and India Pender Martin, whose grandfather was diagnosed when she was three and who is also active in the Parkinson’s community. Our panel was expertly moderated by Claire Meunier, vice president of research engagement for the Fox Foundation.

Mara and I discussed the path we have been following since my diagnosis, how we communicate with family and friends, our trip to Kripalu and why I started the blog. Bill discussed his diagnosis and how he became active in the Atlanta community and across the US. India talked about dealing with her grandfather’s Parkinson’s symptoms at an early age and her desire to find a cure. Then we took questions from the audience. We received positive comments from attendee’s after each session, and I handed out quite a few cards with the blog address — so might pick up a few more readers!

We are glad we accepted the invitation to participate on this panel even though neither of us are fans of public speaking. It became easier for me when Bill said, “I can meet a person with PD and immediately strike up a conversation.” Which is true for us too. We added many new friends to our support group. Partners in Parkinson’s allowed us the opportunity to “strike up a conversation” with fellow people living with Parkinson’s.

At the closing session Dave interviewed Mahlon R. DeLong MD, who just received the Lasker Award for research that led to Deep Brain Stimulation (DBS). They talked about what’s next and the possibility of using DBS to help with balance and gait issues that aren’t solved with the current procedure. I am excited about that since those are my worst motor symptoms.

So that’s what happens at a Partners in Parkinson’s event and if one is being held near you we both recommend attending, you can find the schedule for the remaining events here.

Next…we are in Northern Michigan to celebrate Mara’s brother’s 70th birthday. Our timing is right and we will attend the Grand Challenges in Parkinson’s Disease conference held in Grand Rapids where we will meet up with a couple we met at Kripalu.

Whew this was a long post, thanks for sticking it out to the end and stay tuned for the next post.

September 19, 2014
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

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

Parkinson’s Disease Southeast Symposium Coming Soon!

On The Road…Again!

At the Beach — Again!