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

Happy Holidays!

Wow, here it is almost Christmas, this year has just sailed by. We are in Seattle to visit family, see our granddaughter dance in The Nutcracker and have an early Christmas before we go on to San Diego to visit more family and celebrate more Christmas! I just wanted to take a moment and wish everyone a Happy Holiday Season. This is a magical time of year and I hope you all enjoy time with family and friends. Thank you all for your support and positive thoughts as I continue my journey with Parkinson’s Disease.

PS: Don’t forget, sign up for the Fox Trial Finder here! Lets make 2015 the year of the CURE!

PPS: It’s also time to sign up for the 2015 Mary-thon, an event that provides you with a reason to exercise at least 30 minutes a day, 5 days a week for 26 weeks. I wrote about the Mary-Thon last year in this post . No running is required, any form of exercise qualifies and a portion of your entry fee goes to Project Linus, a non-profit organization with chapters around the country that provide blankets to children who are seriously ill, traumatized, or in needy situations. Click on this link for more information about Project Linus and this link to sign up for the 2015 Mary-Thon which starts January 4th.

Thanks again and have a Merry Christmas and a Happy New Year!

Volunteer and Help Find a Cure for PD!

As promised in the last post, today I will discuss our experiences with clinical trials and the Fox Trial Finder (FTF) web application. But first, are you on Fox Trial Finder? If not, click on this link and sign up today! Currently there are 475 trials listed on FTF taking place in locations around the world. They include interventional trials (reducing tremor or dyskinesia, Tai Chi for balance, tele-medicine, etc.) and observational trials (bio markers, brain mapping, genetic research, wearable devices to measure PD, etc.). When you sign up for FTF you create a profile with information such as length of time with PD, medications, symptoms, and how far you are willing to travel to participate. FTF then matches you to trials that fit your profile. And don’t forget, most trials need control volunteers too so sign up your family and friends! Ready to sign up? Click on this link now! I’ll be here when you come back.

Welcome back! Mara and I recently participated in an observational study titled LRRK2 and Other Novel Exosome Proteins in Parkinson’s Disease conducted by the University of Alabama at Birmingham. The main purpose of this study is to determine whether there are biomarkers associated with Parkinson’s disease susceptibility and/or progression in exosome-proteomes derived from PD patients that will assist with future LRRK2 inhibitor clinical trials. You can read the full description here on FTF but it’s not exactly written in layman’s terms. (Maybe this could be a simple change to the process?)

After arriving at the UAB Medical Campus we were met by Rachel Clark who is coordinating the research study. She went over the research protocol and we signed the consent forms; she then asked us questions about our general health and medications we take. We both completed the Uniform Parkinson’s Disease Rating Scale (UPDRS) patient questionnaire and we were each given the Montreal Cognitive assessment. Then we took the Parkinson’s Smell Test which Mara did fine on and, surprise surprise, I didn’t. Out of 40 samples I got 10 correct while Mara got 37. I was able to identify two odors and the rest were just lucky guesses. I was also given the general physical tests for PD (tap your fingers & toes, walk down the hall, etc.) and we both provided blood and urine samples. That was it! One and a half hours and we had provided them with the necessary information and samples and completed our first clinical trial! It wasn’t time consuming, I didn’t have to worry about receiving a placebo or changing my medications, and I was only poked enough to provide 1 ounce of blood.

Many of the trials listed on FTF are observational studies like this one and seven are web based like the other trial I am participating in – Smartphone-PD. All of them provide valuable information in the search for a cure and all need participants. Did you click on that link yet?

Smartphone-PD is a study to see if it is feasible for participants to download, install, and use an Android smartphone application to track data related to Parkinson disease symptoms. (Note: only available for Android phones) They hope to measure daily variability of movement and mobility characteristics of PD patients. The data is collected by completing voice and movement tests using my cell phone. The results of the daily tests are encrypted and uploaded to the study team at the University of Rochester in New York. The application will also monitor my daily activity if I keep my phone in my pocket.

I found this trial here on Fox Trial Finder and signing up is all done online. I reviewed the study plan and the consent form which includes the disclaimer that this study is purely for research purposes, so they will not be able to provide clinical advice for individuals with PD. Therefore, no adjustments to medications or appointments with a neurologist will be made as a part of the study. After electronically signing the consent form, I received an email with a link to the application which I downloaded to my phone and I was ready to go.

For this study I use my phone to complete five tests twice a day for six months. The first time is in the morning prior to taking my medication and then again about an hour later. They realize that you might not be able to complete the tests on that schedule but they are OK with that as all collected data is valuable. So it’s OK to miss a test day due to travel or whatever, they still want the information.So most every morning I open the application on my phone and spend five minutes completing the tests which include a voice test, a balance test, a gait test, a dexterity test and a reaction test. The results are sent off and I take my medications, have breakfast and try to remember to repeat the test an hour or so later. This study is actively recruiting on FTF or the Parkinson’s Voice site. Both PwP’s and controls are needed. You can also contact Denzil Harris, the research coordinator by email or phone him at 585-275-2791 for more information.

See, getting involved in a clinical trial is not as difficult as one might think, even if you live in a small town or aren’t close to a research center . Using Fox Trial Finder to identify trials you might be eligible for takes just a little bit of your time and the rewards are many including that good feeling of being involved in the quest for a cure. As I have said before, while patients and researchers work to change the current process, there are still many trials that need participants. If we don’t participate, we will continue to rely on a drug discovered almost 50 years ago that only treats some of our symptoms. With 475 possible trials listed, I bet you can find one that interests you, so click on this link and join over 39,000 others on Fox Trial Finder today!

(Updated 12/11 to add the links to Fox Trial Finder so it shows up in mobile device view with thanks to the Cure Parkinson’s Trust )

This has been a busy month of events, travel and, of course, exercise. Here are some of the highlights.

We started the month by attending the Davis Phinney Foundation Victory Summit in Punta Gorda, FL (about an hour away). This was our second time to attend one of these events and it was even better than the first time. The event included motivational talks by Davis Phinney and Tim Hague who, with his son, won the first Amazing Race in Canada. In addition our event featured presentations by local medical personnel and support groups and a presentation by Connie Carpenter-Phinney about care partner strategies. If you get a chance to attend a Victory Summit (check the website for locations and dates), I highly recommend it.

Next we took a road trip from Sarasota to Hilton Head Island, SC to visit friends. On the way there and on the way back we stopped off in Amelia Island, FL where we enjoyed hiking at Fort Clinch State Park and Big and Little Talbot Islands State Parks.

After hiking, we took the car ferry across the St John River to Mayport, FL for a great sea food lunch before heading home.

The next event was lunch with friends at Frenchy’s Outpost Bar and Grill in Dunedin Fl where Mara saw this piano and is making plans to decorate our piano we have in Tennessee.

After lunch we went to Honeymoon Island state park and hiked the trail to an eagles nest where one eagle was on the nest and the mate appeared in a tree close by, you can just make them out in this photo. (even with the red arrows!)

Our next trip was going to West Virginia University Medical School in Morgantown, WV to watch our grand daughter Breanna receive her White Coat, signifying completion of two years of medical school and her transition to clinical training which will start this summer. We enjoyed the ceremony and Morgantown, cold weather and all!

So that’s a quick look at what’s been happening this month. We continue to shoot for at least an hour of exercise per day choosing from tennis, PD in Motion Dance Class, various classes at the YMCA (yoga, tai chi, and others) and Pedaling for PD. Yet another study by Northwestern was released in the last week or so showing the benefits of at least 150 minutes per week in slowing the progression of PD. And the best exercise??? The one you will do!!!

On April 1, we will attend the National Parkinson’s Foundation Moving Day Walk in Tampa. This will be our first Moving Day Walk and we are looking forward it as we kick off Parkinson’s Awareness Month.

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

Tag: Travel

It’s Been a Busy March!

This has been a busy month of events, travel and, of course, exercise. Here are some of the highlights.

We started the month by attending the Davis Phinney Foundation Victory Summit in Punta Gorda, FL (about an hour away). This was our second time to attend one of these events and it was even better than the first time. The event included motivational talks by Davis Phinney and Tim Hague who, with his son, won the first Amazing Race in Canada. In addition our event featured presentations by local medical personnel and support groups and a presentation by Connie Carpenter-Phinney about care partner strategies. If you get a chance to attend a Victory Summit (check the website for locations and dates), I highly recommend it.

Next we took a road trip from Sarasota to Hilton Head Island, SC to visit friends. On the way there and on the way back we stopped off in Amelia Island, FL where we enjoyed hiking at Fort Clinch State Park and Big and Little Talbot Islands State Parks.

After hiking, we took the car ferry across the St John River to Mayport, FL for a great sea food lunch before heading home.

The next event was lunch with friends at Frenchy’s Outpost Bar and Grill in Dunedin Fl where Mara saw this piano and is making plans to decorate our piano we have in Tennessee.

After lunch we went to Honeymoon Island state park and hiked the trail to an eagles nest where one eagle was on the nest and the mate appeared in a tree close by, you can just make them out in this photo. (even with the red arrows!)

Our next trip was going to West Virginia University Medical School in Morgantown, WV to watch our grand daughter Breanna receive her White Coat, signifying completion of two years of medical school and her transition to clinical training which will start this summer. We enjoyed the ceremony and Morgantown, cold weather and all!

So that’s a quick look at what’s been happening this month. We continue to shoot for at least an hour of exercise per day choosing from tennis, PD in Motion Dance Class, various classes at the YMCA (yoga, tai chi, and others) and Pedaling for PD. Yet another study by Northwestern was released in the last week or so showing the benefits of at least 150 minutes per week in slowing the progression of PD. And the best exercise??? The one you will do!!!

On April 1, we will attend the National Parkinson’s Foundation Moving Day Walk in Tampa. This will be our first Moving Day Walk and we are looking forward it as we kick off Parkinson’s Awareness Month.

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

March 31, 2017
Is Anybody Out There? (Part Two)

I realize that I should have included these photos with the last post about our activities for the last two months. Hover over the picture for captions.

So there you have it, in two posts we are up to last weeks World Parkinson’s Congress meeting in Portland, OR. Those adventures will be up next!

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

September 26, 2016
Hello, Is Anybody Still Out There?
It has been 2 months since my last post (good thing I didn’t promise to post more this year!)and it wouldn’t surprise me to find out no one is following this blog anymore. it has been a busy two months and as you will see below, I am probably 3 or 4 posts behind. So today’s post is a short one to let you know I’m still kicking and will catch up soon.

Wondering what’s been going on since July 24th? Here is the short version in chronological order:
- Daughter Holly and grandchildren Charlie and Kayla along with Kayla’s friend Anna visited the Lake Cottage
- I turned 70!
- We met up with son Ryan, his wife Sarah, and grandson Julian in Sonoma and San Francisco to celebrate Sarah and my birthdays
- We stopped off in Colorado on the way home to visit friends in Aspen and Denver and family in Denver and Colorado Springs
- We packed the van to the top and moved most of the house to Sarasota for our Sarasota Experiment Part Two(A)
- We hosted this year’s 3 M (Mara, Mary Ann and Marilyn) reunion in Sarasota
- We flew to Seattle to visit family before the World Parkinson’s Congress started in Portland
- Sons Dale and Ryan and I flew into Walla Walla, WA for a big birthday celebration (Ryan’s 40th, Dale’s 50th and my 70th) which included winery and brewery tours in a Tesla Model X (yep the one with the gull wing doors!) and
- We just completed the week long 4th World Parkinson’s Congress in Portland where we served as volunteers. This event will probably take two or more posts by itself, it was an amazing time.
Whew! No wonder I’m tired!!! So as you can see, a lot has been going on and I owe you a few posts with some details which I will start working on forthwith. It may take a few weeks to get it all published but I’m going to try and get it done in shortly after we return to Sarasota next week.

More to come.

“It does not matter how slowly you go as long as you do not stop.” – Confucius
September 24, 2016