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
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:
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
Three years ago today I received the official diagnoses – “You have Parkinson’s Disease.”. And so began my journey as a PwP which included starting this blog a couple of weeks later.
A lot has happened in the last three years including the visit to Kripalu, going to the University of Florida Movement Disorder Clinic for a second opinion, attending Partner’s in PD meetings in Atlanta and Ft Lauderdale, going to the Grand Challenge in Parkinson’s conferences in Grand Rapids in 2014 and 2015, and switching to the Vanderbilt Movement Disorder Clinic for my PD care. And then there is the ongoing Sarasota experiment this year!
If you look back through the 3 years of posts, you will notice that I was much more of a blogger early on with 12 posts in 2013, 25 posts in 2014, slowing to 19 in 2015 and all but stopping with 6 in the first seven months of this year. I’d like to say things will improve but as I have added responsibility for a several PD related websites I don’t think it will improve much. In addition to this blog, I also maintain the PK Hope is Alive support group website, our local Kingston support group site and we have developed the Tennessee Parkinson’s Disease Resource site in an attempt to gather as many of the resources as we can in one place. We hope that this site benefits the entire PD community in Tennessee.
Enough excuses, it has been a positive three years so let’s talk about the pluses!
One plus of traveling to the various conferences and other meetings is I have met so many inspiring PwP’s who have lived with PD longer than I but are staying active and not letting PD define them. Seeing them and keeping up on ongoing research in PD gives us hope that a way to slow the progression or even a cure is possible in the next 5 – 10 years.
The change in medication to Levadopa/Carbidopa has produced a marked reduction in my symptoms which allowed me to up my exercise routine which has also reduced the symptoms and improved my overall health.
Our Sarasota experiment is progressing well, I have been doing Pedaling for Parkinson’s while there and using the on-site fitness center to keep up the exercise routine plus the robust PD community there includes PD in Motion dance classes, boxing classes and yoga classes and we are hoping for another “Let Your Yoga Dance” with Megha this winter.
As for the future:
We will return to Sarasota around the first of September for a bit before we go to Portland for the World Parkinson’s Congress. We are really looking forward to this meeting which brings together PwP’s, care partners, and researchers from all over the world to discuss the status and the future of PD. We hope to renew old friendships and make new ones during the four day conference.
We will continue to participate in clinical trials and serve as Fox Trial Finder Ambassadors and I will continue to blog, hopefully more regularly than I have been.
And finally I want to say thank you to the best care partner ever, my wife Mara and to family and friends who have provided tremendous support on my journey with PD.
Thank You All!
“It does not matter how slowly you go as long as you do not stop.” – Confucius
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 )
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 )
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 )
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.