Wow, here it is December already. What happened to the month of November? It seems to have just flown by along with my good intentions to post at least every 2 -3 weeks. Ah well, you know apathy is another symptom of Parkinson’s 🙂 I started working on a post a couple of weeks ago planning to expand on my last post about the Kripalu Retreat experience but then I discovered that one of the other attendees was working on a similar project and I happily received permission to link to her post instead of reinventing the wheel as we used to say back in the day’s before retirement. So I invite you to follow Barbara’s Ramblings! Barb has done a great job of summarizing the opening session and the PD101 session with Dr. Houghton and she has laid out the other topics which she plans to also summarize as time permits. Thanks Barb! (Update 10/1/2017 – Barb’s Blog is no longer being maintained so links removed)
One thing we have been continuing since the Retreat is listening to Divine Sleep Yoga Nidra, a guided meditation CD from Jennifer Reis, one of the instructors at Kripalu. We play it almost every night and have found it to promote deep relaxation and sound sleep.
This month I purchased an indoor bike trainer so I can bike inside this winter. Bicycling has been shown to be beneficial for PWP so I plan on biking at least 3 days a week. I haven’t been on a bike in probably 5 years so I have already discovered that my rear end and the seat need to get reacquainted! We are still walking when the weather permits and we dropped our time to 35 minutes recently which is close to where it was last year.
Speaking of exercise, it’s time to sign up for the 2014 Mary-thon. I mentioned this event in a previous post. This is a great way to stay motivated to exercise. You pledge to exercise 30 minutes 5 days a week for 26 weeks. Running is not required, any form of exercise will do and this year you get a pedometer, access to Hannah’s Gym and weekly emails with your registration and $10 goes to the Project Linus organization which provides blankets to kids in traumatic situations. Go to www.mary-thon.net for more information and to sign up.
This month brings my first Physical Therapy appointment, a visit to the Neurologist and, of course, the Christmas Holidays. I plan on another post before the holidays, but just in case we wish you all a Happy and Joyous Holiday Season!
This wellness retreat for recently diagnosed PWP’s and their caregivers included sessions with a leading Movement Disorder Specialist, along with sessions about exercise, relationships, nutrition, and resilience led by experts in the field. And we had various yoga, yoga dance and meditation sessions in addition to the yoga offered daily at Kripalu. Oh and did I mention the food? We enjoyed wonderful healthy meals every day in the cafeteria all made from organic and local foods.
I will go into more detail in the next post, but first what is Kripalu? Seems like a simple question but I don’t think you can fully understand the Kripalu experience until you spend some time there. Here is part of the description from the Kripalu website:
Kripalu Center for Yoga & Health is a nonprofit educational organization dedicated to empowering people and communities to realize their full potential through the transformative wisdom and practice of yoga. For more than 30 years, Kripalu (kri-PAH-loo) has been teaching skills for optimal living through education for the whole person: body, mind, and spirit. (Emphasis added) It is the largest and most established retreat center for yoga, health, and holistic living in North America.
While it is definitely a center for the practice of yoga, the key statement is in bold above, “…teaching skills for optimal living for the whole person…” As you will see throughout this series of posts, we learned much more than the benefit of yoga during our retreat. One of the best things we learned during our retreat was we are not alone in dealing with Parkinson’s. There were about 70 attendees and we and the instructors quickly bonded as a group even though we had never met before and each of us had different symptoms and different issues to deal with. We left with a strong sense of community, a 5 page list of email addresses and phone numbers for staying in touch and lots of good information and ideas for dealing with Parkinson’s.
Without a doubt this was the best gift we could have given ourselves at this time in our lives. I can’t say enough good things about our experience but I’ll try in the next post 🙂
Here we are showing off our medals (and our Beat Parkinson’s TShirts) from this year’s Mary-thon. What is a Mary-thon you might ask? The Mary-thon is a 26 week exercise program developed by Mary Balagna, vice president of the National ProjectLinus organization.
The idea of the Mary-thon is you commit to exercise at least 30 minutes 5 days a week for 26 weeks. You don’t have to run or walk for 30 minutes you just need to complete 30 minutes of exercise.
We like to get out and walk for our exercise and I keep track of our time on a simple spreadsheet showing our time for the days of the week for 26 weeks. Since we usually walk the same path through the park next door, when my times started getting slower this year, it was yet another indicator that something was amiss. On the plus side the times have been going down since I started the medication which indicates it is helping reduce the rigidity and slowness.
Mara and I both volunteer for the local Project Linus Chapter. Project Linus is a volunteer organization with chapters across the US that give handmade blankets and afghans to children who are seriously ill or otherwise traumatized. When you sign up for the Mary-thon, a portion of your registration fee goes to Project Linus. In addition you get a work book with all types of exercise routines that will meet the 30 minute time frame and fit your ability level. Mary sends weekly emails with encouraging words to help keep you on track and if you complete the Mary-thon you receive a medal. .
Many studies have been completed that show that exercise is essential for People with Parkinson’s (PwP), in fact last week at the Third World Parkinson’s Congress held in Montreal, Canada one of the bloggers in attendance said that many of the sessions mention exercise as essential to optimizing daily life with Parkinson’s. But getting motivated to exercise regularly is not easy even if you don’t have Parkinson’s so consider joining next years Mary-thon.
Of course 26 weeks is only half the year so you can sign up for the Ultra Mary-thon and do another 26 weeks to finish out the year. If you are looking for an exercise program which is specifically designed for PwP, check out the new program available from the Davis Phinney Foundation. The program includes a free DVD with PwP particpants showing you how to do the exercises. A booklet is also available with the exercise information in written form. You can request a free DVD at the Davis Phinney Foundation website by clicking here. We have been trying to do the stretching exercises most mornings and both of us have noticed some improvement in flexibility especially our necks. I look forward to trying the exercises when we are unable to get out for out daily walk.
We just returned from two nice days at our favorite Smokey Mountain destination, The Dancing Bear Lodge in Townsend, TN. The plan was to visit the Great Smokey National Park, but congress apparently thought it would be better to shut down the government, including clinical trials, instead. But we had a great relaxing time and two wonderful meals at the lodge. Next weekend we head up to the retreat at Kripalu Resort in Massachusetts followed by a chance to meet with some friends from New Hampshire. Should be a great experience!
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.
