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 )

When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.

Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.

We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!

July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!

Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.

This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.

I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.

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

Year: 2015

Anniversaries abound!

When last we met, we were preparing for a visit from my daughter Holly, Paul and grandchildren Charlie and Kayla. We had a great visit, spending most of our time on the lake where Charlie enjoys riding the tube and Kayla is an expert fisher person and the DJ for the ‘partyboat’. Holly and Paul tried out the new paddle boards and we squeezed in a trip to Knoxville for a nice dinner.

Now for the anniversaries. Last week, Mara and I celebrated our 25th wedding anniversary with a visit to a wonderful B & B in the Smoky Mountains and a great dinner at the Foothills Milling Co. After a busy month we enjoyed the R & R time which included a nice but strenuous hike to Spruce Flats Falls. The trail was steep and rocky but the beautiful falls made it all worthwhile. As we walked the trail, we remarked that I probably could not have made this trip last year and what a difference the change in medication has made in my symptoms.

We finished up the week by taking the boat out to watch the sunset and the ‘blue’ moon rise. This 180 degree panoramic photo doesn’t do justice to the beautiful sunset but it was a great way to celebrate my birthday!

July 24th was the two year anniversary of my official Parkinson’s Disease diagnosis and August 6th marked two years of writing this blog. During the year I changed to a Movement Disorder Specialist at Vanderbilt Medical Clinic and I am happy to report that his changing my medication has made a remarkable difference in my symptoms and provided me with improved gait, balance and arm movement. As noted above, I am walking at a normal pace and was able to hike the Smokie’s, something I could not have done last year. I realize that PD is a progressive neurological degenerative disease and I haven’t been ‘cured’ but I sure feel much better than last year and I am not going to worry about when things will change but will continue to enjoy the ride while I can!

Also this past year we attended several conferences including Rallying to the Challenge in Grand Rapids, Partner’s in Parkinson’s in Atlanta where we were members of a panel discussion and again in Ft Lauderdale to learn about being Fox Trial Finder Ambassadors, and the Southern Symposium in Spartanburg, SC which included the Davis Phinney Foundation Victory Summit. Again we have added many new friends to our global support group as we attended these meetings and conferences.

This year we have become MJFF Trial Finder ambassadors to help promote clinical trial participation, and we are participating in trials ourselves. We are working on a new website that will provide a list of PD resources in Tennessee that we hope to promote to PD patients, care persons and the medical community. We continue to promote the need for patient participation in the clinical trial process and will attend the second Rallying to the Challenge meeting in Grand Rapids, MI this fall.

I hope you will stick with me for another year as I travel this road of living with Parkinson’s Disease. I will continue to write about PD research, how my PD is affecting me and I still plan to add a page about exercise programs for PD. I will continue to advocate signing up for Fox Trial Finder and the Fox Insight programs on the blog and in person. As I said last year, I am aware of what the future “might” bring but I will continue to fight to delay the disease and maintain a positive attitude because I believe we will beat Parkinson’s! Thanks for your support, positive thoughts, and encouraging words.

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

August 8, 2015
What I Did During My Summer Vacation (so far)!

It’s been awhile since my last post so will try to catch you up with what’s been happening since June 19th but first and most important I am proud to announce that our granddaughter, Breanna, has been accepted into the University of West Virgina Medical School and will begin classes in August! Very exciting news!

As you can see by the photos below, we have had a very busy summer! And it’s not over yet, more to come in the next post.

The 3M mini reunion while at a wonderful Pacific Coast wedding, what a lovely time. (yes that’s me with a new hat!)

After the wedding, we met up with my son Ryan and his wife Sarahfor a short visit to the wine country which included dinner at the Russian River Brewery and a fantastic wine country tour
with Jason of Boutique Wine Tours (that’s him in the middle). Without a doubt the best way to visit some little known wineries, learn about the area, all while being driven in a limo.

Next was a visit from Mara’s brother John and Kathy,who couldn’t wait to go tubing! We also traveled up to the Cumberland Gap National Historical Park for some sightseeing

Then Ryan, Sarah, Julian and Trysten arrived for the Fourth of July. Tubing, fishing, fireworks and watching the World Cup and the Tour de France! Good times.

And we just enjoyed a short visit with Don and Mary Ann (one of the 3M’s) this week. They stopped by after Don participated in a tennis tournament in Asheville, NC.

Despite our busy schedule, I found time to join the Michael J Fox Foundation wearables study being conducted as part of Fox Insight. The program is open to PwP with an Android phone. They have provided me with a Pebble Smartwatch at no cost which is linked to my phone via the Fox Insight app. Currently they are tracking my activity and tremor via the watch. The data is transmitted to my phone via Bluetooth and uploaded with no identifying data for analysis. The app shows you the activity and tremor in graph form and also provides a medicine reminder, a way to report when you took your medication and to report how you are feeling. The only commitment is to wear the watch for at least 6 weeks. Click here for more information and to sign up.

And, as always, remember to sign up for Fox Trial Finder and Fox Insight – despite my haranguing with every post, only 2300 people have signed up so far for Fox Insight. No travel is required, it’s all web based and remember they need subjects without PD too, so get your family and friends involved.

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

July 20, 2015
On the Road Again!

Yes,we are on the road again. We are working our way to San Francisco to attend a wedding which will also be another 3M reunion. I say working our way because we left home at 8:45 AM for a 10:50 flight to Houston for our connection to arrive in San Francisco around 5pm. But the Houston flight was delayed and we would miss our connection. Sam, a very helpful United employee, was able to get us on a US Air flight to Philadelphia leaving at 3pm and connecting to a San Francisco flight arriving at 9pm.

So, with plenty of time to kill, we took a walk around the airport and on the way back to our gate I see that the Philadelphia flight was delayed and we would again miss our connection! So back to Sam at the United desk where they were able to get us on a 3:55pm US Air flight to Charlotte for a connection arriving in San Francisco at 8:30.

With more time to kill, we decided to get some lunch and on the way back to the gate we see the Charlotte flight is delayed 30 minutes! This meant,if we left at the new scheduled time, we will have 20 minutes to change terminals. A small challenge for me and Dr. Parkinson but all that walking we have been doing paid off and we are in the air, bouncing our way to San Francisco.

Once we get there,we will have a new challenge,finding the little house we are renting in Bolinas, north of San Francisco,in the dark!

Well it is the next day and we are sitting in the little house we rented looking out at the ocean as you can see in the picture. We finally arrived here around midnight and this morning we took a nice walk down to town for some breakfast and a walk on the beach. Good times, good times.

After the wedding and 3M reunion we are going to Sonoma for a couple of days where we will meet up with son Ryan and his wife Sarah for some wine and beer tasting and probably some fine dining. More good times.

This week I finally completed the long promised list of blogs and bloggers I follow. Click on the tab at the top of the page and check it out. Next I hope to work on the post about exercise. Last week the results of a longitudinal study were released showing the benefits of exercise for Parkinson’s patients. Here is a portion of the press release:

SAN DIEGO – Regular exercise and increasing physical activity is associated with a slower decline in quality of life in Parkinson’s disease (PD) patients, according to a study released today at the 19th International Congress of Parkinson’s Disease and Movement Disorders. This study evaluated 2,940 patients from 20 sites affiliated with the National Parkinson Foundation Quality Improvement Initiative. The cohort was assessed using the Parkinson’s Disease Questionnaire (PDQ-39), and patients were measured at baseline, 1 year, and 2 year follow up appointments. Those who were classified as non-exercisers at baseline and began to exercise after their initial visit had significantly less worsening of PDQ-39 than non-exercisers. Ultimately, the study found that increasing physical activity greater than 2.5 hours of exercise per week is associated with a slower decline in total PDQ-39 scores.

Michael Okun, Professor of Neurology at the University of Florida Center for Movement Disorders and Neurorestoration states, “This study makes clear that everyone with Parkinson’s should be exercising. This longitudinal study of patients selected without exclusions shows that patients suffer from delaying starting their exercise program. It doesn’t seem to matter what they do, they benefit from just getting up and out and from moving.” Okun adds, “This study adds to mounting evidence that exercise is good and sooner is better than later.”

I can certainly attest to the benefits of exercise and we are trying to average at least 5 hours a week so maybe I’ll get double the benefit! Hopefully that post won’t take as long as the blog list! In the meantime, check out some of the blogs on my list while you are waiting for my next post and don’t forget to sign up for Fox Trial Finder and the Fox Insight trial. Remember, they need control subjects too, not just Parkinson’s patients so sign up!

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

June 19, 2015