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: Parkinson’s Disease

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
My Everyday Heroes
After my last post, I started thinking about the support network we have built because of the people we have met while attending the Kripalu Wellness Retreat, the Partner’s in Parkinson’s event and the Grand Challenge meeting. The more I thought about them, the more I realized how every one of us has been impacted differently by the many symptoms of PD and how we hunger for information from each other. As Bill Wilkins said in Atlanta, I can meet a person with PD and immediately strike up a conversation and that conversation often gravitates to questions like:
- When were you diagnosed?
- What symptoms do you have?
- What medications are you using?
- How are you dealing with….?
- Do you belong to a support group?
- What kind of exercise regimen do you follow?
In the past year we have met many other PwP’s, care partners, researchers, representatives of organizations supporting Parkinson’s patients and others involved in Parkinson’s care or research. And I have realized how many everyday heroes we have met, for example the couple whose son was diagnosed with early onset PD and can no longer work, or the school teacher who had to retire because she lost her voice, or Soania who was diagnosed at 27 as she was just starting her medical career and now writes a blog for about.com health including one about another hero we met, Steve, who has come up with an innovative way to transport PwP to clinical trials, or Saul from Atlanta whose daughter / care partner was diagnosed with MS and Sandra who started our local support group because she saw a need and many, many more. All heroes in my book.

Then there are the many people we have met that work or volunteer for the Michael J Fox Foundation (MJFF) or the Cure Parkinson’s Trust (CPT) or the National Parkinson’s Foundation (NPF) or Parkinson’s Disease Foundation (PDF) or Brian Grant Foundation (BGF) or Parkinson’s Action Network (PAN) and others. These individuals are dedicated to the cause of finding a cure for PD and they are passionate about it. Some have PD and some have relatives or friends with PD but they all want to be involved in research or fund raising or developing educational materials or advocating on behalf of PD patients at the state and national and world levels. They include Tom Isaacs whom I mentioned in the last post and Jon Stamford of CPT, Claire and Claudia from MJFF, Joyce from NPF, Steve and Linda from PDF, Bill of the Wilkins Foundation, Brian Grant from BGF (duh), and Israel from PAN.

And while we didn’t meet Michael J Fox, I know I am not alone in viewing him as a hero, in fact, he was just selected as the first WebMD Health Hero Hall of Fame winner for his significant accomplishments, both personally and through his foundation, to raise awareness, expand funding, develop treatment options, and advocate for patients in his tireless quest to find a cure for Parkinson’s disease.

And there is the online community which includes some of the same people I’ve already mentioned that I follow on Twitter along with Robert who writes the blog Tremors in the Universe and has just published a book of the same name with part of the proceeds going to MJFF and NPF, and Grove who represents PAN for the State of Idaho and Kaitlyn whom we first met at Kripalu and many, many more. Again even more heroes.

These are just a few examples of the many dedicated PD advocates I have met in the past year. I could easily fill several more pages with examples of the people we have met and the actions they have taken to live with Parkinson’s or help someone else live with PD or the research they have done to find a cure, or the actions they have taken to raise funds for research and education and they are all everyday heros.

Finding a cure or even a way to slow the progression won’t happen without this patient involvement and advocacy. As Tom Isaacs said in Grand Rapids, “We must make patient involvement the rule, not the exception.” He found that PwP’s who are involved in any constructive way benefit from an improved sense of wellbeing and fulfillment. Being able to go to Kripalu and Atlanta and Grand Rapids has resulted in having expanded my network of supporters and increased my understanding of PD. My online community helps me stay current on PD news, new medications and therapies, how others are dealing with the many symptoms of PD and provide me with another support network.

We plan to keep on traveling to Parkinson’s events while I still can and we will continue to be advocates for PD. This includes advocating for increased patient involvement in all aspects of PD from clinical trials to pushing for increased funding for PT & OT visits and for changes that will allow PwP to take or get your medication on time while hospitalized.

I am honored to report that my last blog post – Increasing Patient Involvement – was featured on the Parkinson’s Movement website! Thanks for reading, and if you tuned in to find out about brewing beer at home, maybe I’ll get to that one next !
October 14, 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

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: Parkinson’s Disease

Clinical Trial Needs, Southern Symposium and NOLA!

My Everyday Heroes

On The Road…Again!