• Happy Holiday Season!

    Can you believe it is already Thanksgiving Weekend and the start of the holiday season!  Time really flies when you are having fun. Or maybe it really flies when you are exercising like crazy? For sure it flies by when you are having fun exercising!  We discovered we really enjoy tennis and have been down to the courts at our complex a couple of times in addition to the classes which we hope to continue in the coming months.  It seems that exercising for an hour before the Pedaling for Parkinson’s class is having an impact on my cycling, so think I will try skipping that class for a bit to see if that is the issue or not

    A quick reminder that following Black Friday and Cyber Monday is Giving Tuesday, a great time to make a donation to your favorite charity, no matter what the cause.  Several of the PD Foundations will be matching your donation on Tuesday and I’m sure that is also true for other charities.   It is a great opportunity to make a difference.

    In the spirit of Thanksgiving I want to say a big THANK YOU to my wonderful wife and care partner, Mara, and to my family and friends and to all of you who take the time to read my posts and follow my journey with PD.  Thank you all and Happy Holidays!

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

     

     

  • Suddenly We Are Gym Rats!

     
     
     

    After returning to Sarasota 4 weeks ago we have been ramping up the exercise routine. The day after our return I was off to the YMCA for the pedaling for Parkinson’s class while Mara did weight training.  Later we met with one of the gym instructors to get instructions on the use of the equipment and his recommendations for what I should work on to improve my PD symptoms. Then we met with a wellness coach to go over all of the classes they offer at the YMCA and which ones she thought would benefit us the most.

    The result is we have added 7 more hours of exercise to the 2 hours of pedaling and our hour of PD in Motion for a total of about 10 hours a week. Our classes include Tai Chi, Yoga, Fitness Fundamentals and an aerobic fitness class. Then yesterday, we added two weeks of adult beginning tennis lessons in November since we bought tennis rackets when we got here in June thinking we would take advantage of the courts here in the Village Walk complex where we are renting.

    So now the question  – does more exercise = more benefits for PD patients or can I overdo it? I am trying to pay attention to how well I perform each exercise class and, more importantly, will it impact how well I do with the pedaling class. There is a correlation between maintaining 80 plus RPM and pushing my heart rate into my training zone for at least 30 minutes twice a week and a reduction in my symptoms, so this is the exercise that has to be first. Of course, the way it worked out I have two other classes on the same day as the pedaling,one before and one after.   So far I have noticed some impact on the pedaling but I am hopeful that, as my overall fitness improves, the impact will diminish.

    In our spare time :>) we have been to concerts at the Selby Botanic Gardens, went to the Florida Studios Theater for an evening of Improv, gone to the beach and attended a concert here in the Village Walk. During that concert we discovered that a couple from our PD in Motion Class are also renting in Village Walk – it certainly is a small world!

     

     

    Oh, I did find some time to do a little fishing in the lakes around Village Walk and caught a few nice size small mouth bass. A few days ago, while fishing with some light spinning gear, I caught a trophy large mouth! After about ten minutes I finally landed the fish and luckily a couple came by and took some pictures or this would have just been another fish story! I think this might be the biggest fish I have ever caught, certainly the largest bass.

     
     
     

    While I have your attention I want to pitch SURE-PD3, a clinical trial that is recruiting right now. This is a phase three trial recruiting 270 subjects in 60 locations across the US. The primary objective is to determine whether a moderate elevation in serum urate over 2 years slows clinical decline in early PD.  To learn more about the trial, click here  or on the link on the right to see the presentation and get a link to the Fox Trial Finder description with a list of the trial sites.

    Well, off to exercise!

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

     

     

  • The WPC Experience, a Volunteer Perspective

    Mara and I attended the World Parkinson’s Congress (WPC) in Portland, OR in September and it was a phenomenal experience.  The WPC is a meeting held every three years that brings together PwP’s, Caregivers, Researchers and members of the medical community to discuss what’s happening in PD research and care.  This year’s meeting was the biggest so far with over 4,400 attendees from all over the world.  The presentations ranged from highly technical research results to what is the best exercises for PD and what’s on the horizon.

    Many of my fellow PD bloggers were in Portland and I have read many excellent posts about their experiences at the WPC which I have linked to at the bottom of this post.  I met a few authors of blogs I follow and saw several others but didn’t get a chance to meet face to face as I performed my volunteer duties.

    Rather than duplicate the information contained in the many excellent posts by my fellow PD bloggers, I thought I would write about the WPC from a volunteer’s perspective.  As you can imagine, a conference with over 4,400 attendees from all over the world takes a lot of work and coordination.  The volunteer coordinator was Matthew DePace and he had his hands full making sure all of the presentations were covered, greeters were stationed around to answer questions and guide attendees and be the point person for any problems we might have with microphones, projectors etc. He not only managed to pull it all off, he provided snacks in the volunteer room to keep us going!

    I was assigned as a greeter/room monitor for one of the presentation rooms, so I was able to see and  hear some of the presentations in that room each afternoon when I wasn’t scanning in the attendees and handing out hall passes (OK maybe I didn’t have to hand out hall passes).  Mara mostly worked in the registration area directing attendees to the right locations, helping them find the presentation room they needed, handing out convention goodie bags and programs and answering all kinds of questions.

    Being a volunteer was hectic and exhausting but it was also exciting and rewarding.  We met PwP’s of all ages from all over the world and had the opportunity to talk about differences in care, diagnoses, etc.  We saw many old friends from the Grand Challenge meetings in Grand Rapids and other meetings we have attended. And we made new friends as we expanded our international support group.

    Even though we were busy, we did attend several sessions including ones on stem cell research and exercise.  One of the highlights for us was being present when Tom Issacs of the Cure Parkinson’s Trust in the UK received the WPC award for Distinguished Contributions to the Parkinson’s Community.  I have written about Tom before (here and here) and this award was well deserved.  Tom’s acceptance speech was a mixture of gratitude, humor and hope.

    The closing ceremony was an emotional end to a great 4 days and included this quote from Dr. A. Jon Stoessl, President-elect of the WPC who said, “In the clinic, we focus on what you can’t do but at WPC 2016 we see all the things you can do.”. This is the plus of bringing together PwP’s, care partners, members of the PD medical community and researchers in one place.  We found this to be true in the Grand Challenge events and it was exciting to see it work on such a large scale.

    After yet another phenomenal performance by Tom Issacs who sung a song to the tune of Climb Every Mountain (watch the unplugged version here) the conference ended with a drum ceremony that involved the entire audience.

    As promised here are several links to blog posts from other bloggers that attended the WPC.  By no means are these the only links, there are many posts, tweets (#WPC2016), and web pages with great information from the WPC, so fire up your favorite search engine to find more!

     
     
    from Sheryl Jedlinski (Living Well with Parkinson’s Disease)

     

     

    Arriving At the World Parkinson’s Congress and Perky’s Interview with Brian Grant from Allison Smith (The Perky Parkie)

    Notes from the World Parkinson’s Congress from Kirk Hall (Shaky Paws Grandpa)

    World Parkinson’s Congress 2016 from Karl Robb (A Soft Voice in a Noisy World)

    5 Inspirational moments from the World Parkinson’s Congress 2016 from Parkinson’s Life

    WPC Highlights – Eli Pollard and The World Parkinson’s Congress 2016 from The Cure Parkinson’s Trust

    Again this is not a complete list but should give you a pretty good feeling for the World Parkinson’s Congress 2016!

    We are back in Sarasota and I have started Pedaling for PD and the PD in Motion classes so my exercise time is ramping back up after a few weeks (or months) of being a bit lazy.  It’s amazing how quickly you are able to get going again and even more amazing how much better I feel.  More about the Sarasota Experiment Part Two in the next post.

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

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 )

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 )

Tag: Research

  • Volunteer and Help Find a Cure for PD!

    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 )

  • Cognitive Training and ….Cinnamon?

    Cognitive Training and ….Cinnamon?

    I started ‘brain training’ with Lumosity last fall and usually play five games a day whenever possible.  If you aren’t familiar with Lumosity, they provide cognitive training exercises that teach neuroplasticity, that is training the brain to use new pathways to complete a task.  Cognitive training has blossomed in the past few years and since some of my neural pathways are deteriorating, I thought Lumosity would be an interesting test and might help me build those new paths.

    The Lumosity training works to improve five areas – memory, flexibility, problem solving, attention and speed – all improvements I can use!  After every five game session you get an overall score called  the Lumosity Performance Index or LPI which is an average of the five areas and hopefully goes up each day (I wish).  But enough of the background, if you want more info, check out their website.

    I have found that playing the brain games with PD can be a challenge, particularly the flexibility and speed games that usually require the use of the arrow keys on my laptop to select the right answer.  I have noticed that I can visualize the correct move but making my fingers press the right key is another thing altogether.  As I learned from the presentation by Kaitlyn Roland at the Kripalu session, one of the problems with a lack of dopamine is the brain sends the correct command but it gets scrambled and doesn’t follow the correct pathway which results in the wrong action being taken which can result in a fall, freezing in place or, it appears, pressing the wrong key.

    So I am hopeful that by doing the games every day I am creating those new neural pathways and my LPI score will  reflect the improvement.  But sometimes I seem to be stuck with the old paths and my LPI chart ends up looking like this one for the last four weeks, up and down.  Such is life with Parkinson’s 🙂

    The big Parkinson’s news of the last couple of weeks is the publication of a study that cinnamon might stop the progression of Parkinson’s Disease!  I figure this means I should be baking and consuming my famous (in some circles) Gram’s Pecan Rolls so named because the recipe is from my daughter in law Monica’s Gram and it is full of cinnamon.  Of course the study was conducted on mice so I don’t know how many rolls I need to eat daily but do know what the effect would be on my weight!  Guess I’ll wait for more information before getting the baking equipment out but I wonder if my LPI would go up? Sounds like a clinical study in the making!

    We had a great 4th of July visit with son Ryan and his wife Sarah and their son Julian and his half brother Trysten.  In addition, grandson Jake and granddaughter McKenna and her friend Katie also joined us for the  holiday weekend so we had a houseful.  The kids enjoyed tubing on the lake and swimming off the dock, and we all enjoyed taking the boat down to watch the fireworks go off over the lake.  We even managed to load the tube with all five kids for some fun on the lake.  Again some fishing and paddle boarding took place along with watching the World Cup games.

    Next week it will be one year since my PD diagnosis and a lot has happened in the space of the year, most of which I have managed to chronicle in this blog.   Once again I thank you all for sticking with me on this journey, your support means  a lot to me.

    BTW, if you are a tweeter, follow me on twitter by clicking on the link on the right below my profile.