• Brrrr, It’s Cold!

    Like most of the country this week, we are experiencing bone chilling cold here in East Tennessee. The highs have been under 30 degrees and the lows in the single digits. Not as cold as our neighbors to the north but darn cold after returning home from sunny, warm San Diego.  To add insult to injury (so to speak) our heater decided to stop working yesterday evening so we woke up to a toasty 52 in the house this morning.  Luckily I was able to contact our heat and air repair shop before they closed last night and someone was here by 8:15 this morning and we are back up and warming.
     
    I hope everyone had a enjoyable holiday season, we certainly enjoyed our visit in Seattle which included watching our granddaughter perform in the Nutcracker Ballet, a early Christmas and watching Seahawk and Bronco football.  Christmas in San Diego was nice and warm and included good company, good food and drink and trips to the beach most evenings to watch the sunset and the gray whales making their way south.
     
    It is a new year and a lot of exciting things are happening in Parkinson’s research and treatment. Here are a few examples
    • The FDA just approved Rytary, a slow release levodopa medication that reduces ‘off’ time and dyskinesa.
    • The personal DNA company 23andMe and Genentech have entered into an agreement for Genentech to completely sequence the genome of 3000 people with Parkinson’s with a goal to identify new therapeutic targets for treating Parkinson’s disease.  Currently they have only analyzed about 750,000 genetic data points in any given individuals genome (I was genotyped, not fully sequenced). This new, whole genome sequencing, will allow them to review 3 billion genetic data points within the genome of each participant.
    • NeuroDerm Ltd’s new way to deliver levodopa through a belt worn pump is showing promise as it maintains a consistent dose of levodopa reducing motor complications.
    • The Parkinson’s Disease Foundation has paired with Nature Publishing Group to publish npj Parkinson’s Disease, a new open access, online-only,research journal is dedicated to highlighting the most important scientific advances in Parkinson’s disease research.
    • The Davis Phinney Foundation has released an Ebook version of Every Victory Counts, a manual that gives people living with Parkinson’s – and their caregivers and family members – the tools they need to take control of their own
      Parkinson’s treatment through a proactive approach to self-care.  The book is available free of charge in Ebook or print form here on the Foundation website.
    • And a recent white paper issued by One Research found that patient empowerment is crucial to clinical trial recruitment. The report – which draws on insights from a wide range of stakeholders  including the clinical research sector, pharma, CROs, and patient advocacy groups – says the industry must improve its communication to
      patients, not only to raise awareness of the available opportunities to get involved in clinical research, but also to reassure them of the vital importance of their role. Also, the approach must be truly patient-centric, “ensuring that the priority of research professionals is to work in the interests of the patients”. Sound familiar? You can read more and download a copy of the study here.
     I could go on, but these examples give me hope that 2015 will be the year of the cure! If you haven’t signed up for Fox Trial Finder, you can do so here.  Please join me and 40,000+ other PwP’s supporting the search for a cure.  By the way, if you haven’t signed up for this year’s Mary-Thon exercise program, you still have time to get in corral one which started this week.  Read all about and sign up here.
     
     
    Happy New Year!
     
    “It does not matter how slowly you go as long as you do not stop.” – Confucius
     
     
  • 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 )

We Survived Hurricane Ian!

We have lived in Sarasota, Florida for 6+ years and have come to believe in the urban legend that Sarasota is protected from hurricanes because the Native Americans who first settled here blessed the lands to stay eternally safe from destructive storms and hurricanes. Fact is Sarasota Bay has not been a bull’s eye for a major hurricane in Florida since reliable records began in 1871.

But two weeks ago hurricane Ian that was forecasted to hit in Tampa to our North, started slipping south and suddenly the forecast was for it to come ashore in Sarasota. The emergency management authorities started evacuating the barrier islands, and we joined with a few neighbors to install hurricane shutters in preparation for a direct hit. Since 2002, the Florida building codes require new construction be able to withstand winds up to 150MPH. Our home was built in 2013 so it meets the new codes and it looked liked we were going to test the construction!

We opened our home to couple of friends who had to evacuate and one of them joined us as we hunkered down and got ready to ride out the storm. The Indian blessing seemed to be working as Ian continued to drop to the south and came ashore near Ft Myers’s about 50 miles (as the crow flies)south of us and then tracked northeast thru the city of Northport about 20 miles south of us on its way to the Atlantic, passing over Sarasota with windspeeds of 85 -100 mph. The wind and rain went on most of the night and you could feel the gusts when they hit the house.

We got up the next morning to find the house was undamaged except for a couple of loose roof tiles. There were lots of trees and bushes down in the area but no physical damage that we could see. Even more amazing was we never lost power! According to Florida Power and Light, of their 287,000 customers in Sarasota 280,000 were without power, so we were one of the lucky 7,000. We did lose our internet and cable for a several days, making it hard to keep up with what was happening as cell reception was spotty due to power being out to cell towers or the towers being damaged by the hurricane.

It’s been two weeks since the hurricane and most of the debris in our development has been cleaned up. Our tennis courts are back in operation after replacing the clay that blew off and putting the wind screens back up. There are still pockets of the area without power or internet particularly south of us in Northport where a large portion of the city was flooded by the Myakka river which is still above flood stage.

So, thanks to an Ancient Indian Blessing, good neighbors, and the updated Florida building codes, we survived our first and hopefully only hurricane. We are able to get groceries and fuel again and play tennis and cycle for PD. Life is returning to normal.

We Survived Hurricane Ian!

We have lived in Sarasota, Florida for 6+ years and have come to believe in the urban legend that Sarasota is protected from hurricanes because the Native Americans who first settled here blessed the lands to stay eternally safe from destructive storms and hurricanes. Fact is Sarasota Bay has not been a bull’s eye for a major hurricane in Florida since reliable records began in 1871.

But two weeks ago hurricane Ian that was forecasted to hit in Tampa to our North, started slipping south and suddenly the forecast was for it to come ashore in Sarasota. The emergency management authorities started evacuating the barrier islands, and we joined with a few neighbors to install hurricane shutters in preparation for a direct hit. Since 2002, the Florida building codes require new construction be able to withstand winds up to 150MPH. Our home was built in 2013 so it meets the new codes and it looked liked we were going to test the construction!

We opened our home to couple of friends who had to evacuate and one of them joined us as we hunkered down and got ready to ride out the storm. The Indian blessing seemed to be working as Ian continued to drop to the south and came ashore near Ft Myers’s about 50 miles (as the crow flies)south of us and then tracked northeast thru the city of Northport about 20 miles south of us on its way to the Atlantic, passing over Sarasota with windspeeds of 85 -100 mph. The wind and rain went on most of the night and you could feel the gusts when they hit the house.

We got up the next morning to find the house was undamaged except for a couple of loose roof tiles. There were lots of trees and bushes down in the area but no physical damage that we could see. Even more amazing was we never lost power! According to Florida Power and Light, of their 287,000 customers in Sarasota 280,000 were without power, so we were one of the lucky 7,000. We did lose our internet and cable for a several days, making it hard to keep up with what was happening as cell reception was spotty due to power being out to cell towers or the towers being damaged by the hurricane.

It’s been two weeks since the hurricane and most of the debris in our development has been cleaned up. Our tennis courts are back in operation after replacing the clay that blew off and putting the wind screens back up. There are still pockets of the area without power or internet particularly south of us in Northport where a large portion of the city was flooded by the Myakka river which is still above flood stage.

So, thanks to an Ancient Indian Blessing, good neighbors, and the updated Florida building codes, we survived our first and hopefully only hurricane. We are able to get groceries and fuel again and play tennis and cycle for PD. Life is returning to normal.

We Survived Hurricane Ian!

We have lived in Sarasota, Florida for 6+ years and have come to believe in the urban legend that Sarasota is protected from hurricanes because the Native Americans who first settled here blessed the lands to stay eternally safe from destructive storms and hurricanes. Fact is Sarasota Bay has not been a bull’s eye for a major hurricane in Florida since reliable records began in 1871.

But two weeks ago hurricane Ian that was forecasted to hit in Tampa to our North, started slipping south and suddenly the forecast was for it to come ashore in Sarasota. The emergency management authorities started evacuating the barrier islands, and we joined with a few neighbors to install hurricane shutters in preparation for a direct hit. Since 2002, the Florida building codes require new construction be able to withstand winds up to 150MPH. Our home was built in 2013 so it meets the new codes and it looked liked we were going to test the construction!

We opened our home to couple of friends who had to evacuate and one of them joined us as we hunkered down and got ready to ride out the storm. The Indian blessing seemed to be working as Ian continued to drop to the south and came ashore near Ft Myers’s about 50 miles (as the crow flies)south of us and then tracked northeast thru the city of Northport about 20 miles south of us on its way to the Atlantic, passing over Sarasota with windspeeds of 85 -100 mph. The wind and rain went on most of the night and you could feel the gusts when they hit the house.

We got up the next morning to find the house was undamaged except for a couple of loose roof tiles. There were lots of trees and bushes down in the area but no physical damage that we could see. Even more amazing was we never lost power! According to Florida Power and Light, of their 287,000 customers in Sarasota 280,000 were without power, so we were one of the lucky 7,000. We did lose our internet and cable for a several days, making it hard to keep up with what was happening as cell reception was spotty due to power being out to cell towers or the towers being damaged by the hurricane.

It’s been two weeks since the hurricane and most of the debris in our development has been cleaned up. Our tennis courts are back in operation after replacing the clay that blew off and putting the wind screens back up. There are still pockets of the area without power or internet particularly south of us in Northport where a large portion of the city was flooded by the Myakka river which is still above flood stage.

So, thanks to an Ancient Indian Blessing, good neighbors, and the updated Florida building codes, we survived our first and hopefully only hurricane. We are able to get groceries and fuel again and play tennis and cycle for PD. Life is returning to normal.