We are home from our extended beach stay and, while we are missing the beach, it is spring time here in Eastern Tennessee and the flowering trees and bushes are beautiful, the grass is green and the daffodils and tulips are in full bloom.
April is Parkinson’s Awareness Month and there have been many excellent posts by the Parkinson’s bloggers that I follow including one by Corey King who blogs about his journey with early onset Parkinson’s Disease. His latest post, Acts of Kindness, talks about this being his sixth Parkinson’s Awareness Month and touches on our desire for a cure and how long it will take for FDA approval even if a cure was found today. And then he says this about awareness:
“Awareness is valuable when it is followed by action. So, for me, this April and every April to follow until my last April will be Parkinson’s Action Month. If you’re inclined (and I suspect you might be, if you read this blog regularly), be aware, and ACT on your awareness. Walk or run in support of research, and form a team or obtain sponsors. Comfort a friend who needs it, and instead of saying “let me know if you need anything,” ask, “Can I bring you dinner on Thursday? There’s a new exhibit at the McNay – wanna go with me on Saturday?” Learn and be aware; then teach. Then, come together and act.
Money and research is important, but connectedness and community is just as important. Money and research will eventually enable us to find a cure. And our connectedness will help us get through this night, and the next. The American Parkinson’s Disease Association says it very elegantly – their stated mission is to “ease the burden and find the cure.” We may not be close to a cure for PD; on the other hand, there may be one discovered tonight. In the US alone, however, there are more than 1 million people with PD that have to get out of bed tomorrow, and use the gift of life as well as we can. We can’t rely solely on the hope for a cure, but while we anticipate one, perhaps we can rely on each other, and on you.”
I found Corey’s thoughts on awareness to be right on target and in line with what we have learned in the last two years: we are a community and we need to stay connected and we need to support each other. So we will continue our efforts to find volunteers for clinical trials, to advocate for patient involvement in the research process, to attend our local support groups and to reach out to other PwP’s via this blog and as Trial Finder Ambassadors because, as Corey states at the end of his post:
“… if we can ease the burden, maybe we can make the road to a cure easier to walk.”
You can read Corey’s entire post here at his blog The Crooked Path .
On April 25th PK Hope is Alive support group will hold a local Parkinson’s Unity Walk in support of the national Parkinson’s Unity Walk held the same day in Central Park. The great thing about this event is 100% of the proceeds go to Parkinson’s research funded by seven major U. S. Parkinson’s organizations. Mara and I will be walking in the local event and will also provide an information table for the Michael J Fox Foundation Trial Finder, our first event as Fox Trial Finder Ambassadors. And we have been asked to make some opening remarks before the walk starts! If you are in the Eastern Tennessee area we would love it if you can join us and other PwP’s and their families and friends for a relaxing 1.2 mile walk around Bissel Park in Oak Ridge. More information about the local event can be found here. If you are unable to attend but would like to support us and Parkinson’s research you can make an online donation here.
We are working to keep up the exercise level we established at the beach and I am completing a review of the various exercise options available for PwP’s and hope to have that done by the next post. In the meantime don’t forget to sign up for Fox Trial Finder and Fox Insight and help advance Parkinson’s research.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
It’s been a busy couple of weeks and I know everyone is waiting for an update from the beach 🙂 As I mentioned in the last post we were planning a Kripalu mini-reunion with Joel and Melisa and Marcia and Erwin and we were able to get together for lunch and then a nice visit while sitting on the beach. As Marcia said later, “..it felt like connecting with very close family.” We all caught up on what has happened since October 2013 which, of course, included what medications we were taking, comparing notes on doctor visits, etc. Marcia and Erwin along with another couple from our Kripalu visit are staging the first Pocono FoxTrot 5K for Parkinson’s with the proceeds going to the Michael J Fox Foundation. If you are going to be in the Pocono’s area June 20th, you can sign up for the 5K run/walk, the 1 mile community walk or the Kids 1 mile run/walk at this link.
A few days later, we attended our second Parkinson’s Cafe event, a backstage tour of the Sarasota Ballet. This tour included a chance to watch the ballet master conduct training for about 30 cast members and students which was fascinating, they just flew across the room executing jumps and turns like they had wings!After the tour, we participated in a PD in Motion class, a dance/exercise class for PD patients which is conducted every week by the Neuro Challenge Foundation here in Sarasota. The program was started in NYC and has expanded nationwide. As you can see, most of the exercises were done sitting down and involved moving legs, arms, and torso. We really enjoyed it and we attended the next class and will catch a couple more before we leave the beach.
And this week we attended a choral singing class, also sponsored by the Neuro Challenge Foundation. Called the Off Key Choir about 45-50 of us sang some Irish tunes since it was St Patrick’s day, and, by the end we did it in 4 part harmony! This was a great way to learn breathing and speech techniques to help with the soft voice of PwP. It was great fun and we are happy Merrily and Robert Manthey told us about it and invited us to attend.
We met Merrily at the Parkinson’s Cafe event and she told us how a year ago, she was in a wheelchair but no longer needs it after participating in the exercise programs provided by the Sarasota Memorial Hospital Healthfit Gym. In fact her story was featured in the February 2015 edition of Sarasota Magazine. Merrily is an outstanding example of how exercise can help fight PD. Mara and I are convinced that increasing my exercise time has reduced my symptoms and I’m looking at other exercise programs that might provide additional benefit, you can expect to hear more about that project in the next post.
We also had a nice visit with Tom and Marilyn, our friends from Colorado, the weather was great and we got in our long walks every morning and beach time every afternoon and took in a play at the Aslo Theater. Good Times, Good Times!
Recently Sage Bionetworks announced an app called mPower, as part of the Apple iPhone Research Kit. Currently only available for the iPhone, mPower will gather information daily from users which will feed into a database for analysis. At the same time the Michael J Fox Foundation announced Fox Insight, an online clinical trial for both PwP’s and those without PD who will complete a series of surveys every 90 days regarding their health, symptoms, medications, etc. You can link it to your Fox Trial Finder profile during the sign up process and soon you will also be able to link to the mPower app information. It is easy to enroll and takes only about 20 – 30 minutes to complete the surveys plus you can print a report of the results to take along on Doctor visits.
This week we attended the Partners in Parkinson’s event in Fort Lauderdale, FL sponsored by Michael J Fox Foundation & AbbVie . We attended this event in Atlanta last year and came away with new information and new friends as reported in a previous post, On the Road Again. Since we were in Florida, we thought we would attend the Ft Lauderdale event to find out what’s new, make some new friends, and catch up with Claudia Marshall who heads up the Fox Trial Finder (FTF) Ambassador program and get some pointers on our new roles as FTF Ambassadors.
This year’s event followed the same format at last year with the morning panel sessions covering:
The Many Faces of Parkinson’s Disease – Moderator Dave Iverson and the four panelists explored how their lives have changed since their PD diagnoses. Each of the panelists discussed how they approached telling family, friends and coworkers, and where they turned for more information about PD, among other topics.
Seeing a Movement Disorder Specialist: What to Know, Ask and Expect – This panel included Bob Harmon and his wife Cecily. Bob is also a FTF Ambassador whom I met at the Sarasota meeting a few weeks ago. They were interviewed by Dr Stuart Isaacson, a local Movement Disorder Specialist. It was a great session with Dr Isaacson asking Bob a series of questions about his symptoms just as if it was a real appointment. When Bob indicated that mornings are difficult as he takes his last dose of medications at 9pm, Dr Isaacson recommended a change to the timing of his medications to help alleviate the problem. They also discussed acting out of dreams, bladder urgency and other non motor symptoms. After each question Dr Isaacson offered suggestions for new medication or timing of medication or other solutions Bob could take to reduce the impact of the symptom. He even conducted the usual tests like tapping feet and fingers and watching him walk across the stage. And like the speakers at the Sarasota meeting, Dr Isaacson also reinforced the need for regular exercise. Once again, this was great example of why you should see a Movement Disorder Specialist if at all possible.
Parkinson’s Research: The Road Ahead – Moderator Dave Iverson and the panel discussed the new drugs recently released (Rytary, the extended release levodopa and Duopa, the intestinal gel levodopa), plus what’s coming up such as an inhaler to provide dopamine quickly, new advancements in DBS, and genetic research among other topics. They also pointed out that recent research has shown that regular exercise is beneficial and slows down the progression of PD.
The afternoon sessions included the breakout sessions:
Living Well with Parkinson’s – conducted by The Davis Phinney Foundation which provides a holistic approach based on exercise and diet that provides lifelong benefits.
Building Connections with Family, Friends and Community – moderated by Dave Iverson, the panelists in this session discussed personal relationships, how they deal with PD and what they have done to promote awareness about PD.
I’m Still Wondering About – an opportunity to ask the experts questions that weren’t covered during the morning sessions.
Once again, this was an extremely informative event that presented timely information to an audience hungry to learn more about PD. The resource fair provided opportunities for participants to meet with local south Florida representatives of the NPF, PAN, and PDF along with MJF and to meet with local providers of PD related medical care such as BIG and LOUD. And we met with Claudia and had an opportunity to further discuss the FTF Ambassador program and watch the FTF Ambassadors in action as many attendee’s stopped by their table for information about FTF.
As happened at the last event, we added several new members to our ‘world wide’ support group. One of our table mates grew up in Colorado so in addition to comparing notes about our PD, we discussed all things Colorado. Another table mate had just moved to Florida to help care for his father who has PD and he was very interested in all of the information we received during each session.
We also ran into a couple we had met at Kripalu in October, 2013, Marcia and Erwin Guberman. They have been visiting in Florida for several weeks and will be in the Sarasota area this weekend so we hope to hold a mini-reunion with them and Melissa Wenig and Joel Gordon our Sarasota friends who we also met at Kripalu. And what would a meeting be without seeing Bill Wilkerson from our Atlanta panel, it seems he follows us everywhere :). We congratulated him on being recently named this year’s recipient of the Alan Bonander Humanitarian Award which he will receive at the National Parkinson’s Unity Walk in April in New York City.
It was a great event (again) and we highly recommend (again) attending a Partner’s in Parkinson’s event if one is held near you. You can check the 2015 locations and register on the PIP Site.
Next week we will attend another Parkinson’s Cafe event at the Sarasota Ballet and we have guests coming from Colorado for some beach time. Until next time, if you haven’t signed up for Fox Trial Finder you can do it here and if you have signed up take time to check your trial matches or update your profile at the same link.
“It does not matter how slowly you go as long as you do not stop.” – Confucius
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At tellus at urna condimentum mattis pellentesque. Arcu non sodales neque sodales. Tincidunt ornare massa eget egestas. Ut tortor pretium viverra suspendisse potenti nullam ac tortor vitae. Vestibulum rhoncus est pellentesque elit ullamcorper dignissim. Donec adipiscing tristique risus nec feugiat in. Ut ornare lectus sit amet. Hendrerit dolor magna eget est lorem. Ipsum suspendisse ultrices gravida dictum fusce. Ultricies leo integer malesuada nunc vel risus commodo viverra. Mauris in aliquam sem fringilla. Fermentum odio eu feugiat pretium.
Tellus in metus vulputate eu scelerisque felis imperdiet proin. Eu ultrices vitae auctor eu augue ut lectus. Enim sed faucibus turpis in eu. Hac habitasse platea dictumst quisque sagittis purus. Justo laoreet sit amet cursus. Lobortis mattis aliquam faucibus purus in massa tempor nec feugiat. Mauris pharetra et ultrices neque ornare aenean euismod elementum nisi. Lectus sit amet est placerat. Vulputate enim nulla aliquet porttitor lacus luctus accumsan. Odio pellentesque diam volutpat commodo sed egestas. Sapien eget mi proin sed libero. Ut placerat orci nulla pellentesque. Mi quis hendrerit dolor magna eget est. Nunc scelerisque viverra mauris in aliquam. Sapien faucibus et molestie ac feugiat sed lectus vestibulum mattis. Odio ut enim blandit volutpat maecenas volutpat blandit. Cras sed felis eget velit aliquet sagittis id consectetur purus. Porta nibh venenatis cras sed felis eget velit. Imperdiet proin fermentum leo vel. Tempus egestas sed sed risus pretium quam vulputate dignissim suspendisse.
Lorem ipsum dolor sit amet consectetur adipiscing elit duis tristique. Nunc consequat interdum varius sit amet mattis vulputate enim. Faucibus et molestie ac feugiat sed lectus vestibulum mattis. Massa sed elementum tempus egestas sed sed. Nunc consequat interdum varius sit amet. Neque vitae tempus quam pellentesque nec. Cursus metus aliquam eleifend mi. Eu scelerisque felis imperdiet proin fermentum leo vel orci. Quam elementum pulvinar etiam non quam lacus suspendisse faucibus interdum. Non enim praesent elementum facilisis leo vel fringilla. Nisi vitae suscipit tellus mauris a diam maecenas sed. Lorem sed risus ultricies tristique nulla. Elementum facilisis leo vel fringilla. Ut tortor pretium viverra suspendisse potenti. Diam in arcu cursus euismod quis viverra. Mattis vulputate enim nulla aliquet porttitor. Lorem ipsum dolor sit amet consectetur adipiscing. Libero id faucibus nisl tincidunt eget nullam non. Libero nunc consequat interdum varius.
Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Gravida dictum fusce ut placerat. Convallis aenean et tortor at. Mauris sit amet massa vitae. A condimentum vitae sapien pellentesque habitant morbi tristique senectus et. Malesuada nunc vel risus commodo viverra maecenas accumsan lacus. Magnis dis parturient montes nascetur ridiculus. Volutpat sed cras ornare arcu dui vivamus arcu felis. Neque sodales ut etiam sit amet nisl purus in. Elit ut aliquam purus sit amet luctus venenatis lectus. At volutpat diam ut venenatis tellus in metus vulputate.
Fermentum et sollicitudin ac orci phasellus egestas tellus. Amet dictum sit amet justo donec enim. Iaculis nunc sed augue lacus viverra vitae. Pharetra pharetra massa massa ultricies mi quis hendrerit dolor magna. Vel fringilla est ullamcorper eget nulla facilisi etiam dignissim diam. Nisi porta lorem mollis aliquam ut porttitor. Vel turpis nunc eget lorem dolor. Lacinia quis vel eros donec ac odio tempor orci dapibus. Mi sit amet mauris commodo quis imperdiet. Porta nibh venenatis cras sed felis. Phasellus faucibus scelerisque eleifend donec pretium vulputate sapien nec sagittis. Volutpat ac tincidunt vitae semper quis lectus nulla.
At tellus at urna condimentum mattis pellentesque. Arcu non sodales neque sodales. Tincidunt ornare massa eget egestas. Ut tortor pretium viverra suspendisse potenti nullam ac tortor vitae. Vestibulum rhoncus est pellentesque elit ullamcorper dignissim. Donec adipiscing tristique risus nec feugiat in. Ut ornare lectus sit amet. Hendrerit dolor magna eget est lorem. Ipsum suspendisse ultrices gravida dictum fusce. Ultricies leo integer malesuada nunc vel risus commodo viverra. Mauris in aliquam sem fringilla. Fermentum odio eu feugiat pretium.
Tellus in metus vulputate eu scelerisque felis imperdiet proin. Eu ultrices vitae auctor eu augue ut lectus. Enim sed faucibus turpis in eu. Hac habitasse platea dictumst quisque sagittis purus. Justo laoreet sit amet cursus. Lobortis mattis aliquam faucibus purus in massa tempor nec feugiat. Mauris pharetra et ultrices neque ornare aenean euismod elementum nisi. Lectus sit amet est placerat. Vulputate enim nulla aliquet porttitor lacus luctus accumsan. Odio pellentesque diam volutpat commodo sed egestas. Sapien eget mi proin sed libero. Ut placerat orci nulla pellentesque. Mi quis hendrerit dolor magna eget est. Nunc scelerisque viverra mauris in aliquam. Sapien faucibus et molestie ac feugiat sed lectus vestibulum mattis. Odio ut enim blandit volutpat maecenas volutpat blandit. Cras sed felis eget velit aliquet sagittis id consectetur purus. Porta nibh venenatis cras sed felis eget velit. Imperdiet proin fermentum leo vel. Tempus egestas sed sed risus pretium quam vulputate dignissim suspendisse.
Lorem ipsum dolor sit amet consectetur adipiscing elit duis tristique. Nunc consequat interdum varius sit amet mattis vulputate enim. Faucibus et molestie ac feugiat sed lectus vestibulum mattis. Massa sed elementum tempus egestas sed sed. Nunc consequat interdum varius sit amet. Neque vitae tempus quam pellentesque nec. Cursus metus aliquam eleifend mi. Eu scelerisque felis imperdiet proin fermentum leo vel orci. Quam elementum pulvinar etiam non quam lacus suspendisse faucibus interdum. Non enim praesent elementum facilisis leo vel fringilla. Nisi vitae suscipit tellus mauris a diam maecenas sed. Lorem sed risus ultricies tristique nulla. Elementum facilisis leo vel fringilla. Ut tortor pretium viverra suspendisse potenti. Diam in arcu cursus euismod quis viverra. Mattis vulputate enim nulla aliquet porttitor. Lorem ipsum dolor sit amet consectetur adipiscing. Libero id faucibus nisl tincidunt eget nullam non. Libero nunc consequat interdum varius.
Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Gravida dictum fusce ut placerat. Convallis aenean et tortor at. Mauris sit amet massa vitae. A condimentum vitae sapien pellentesque habitant morbi tristique senectus et. Malesuada nunc vel risus commodo viverra maecenas accumsan lacus. Magnis dis parturient montes nascetur ridiculus. Volutpat sed cras ornare arcu dui vivamus arcu felis. Neque sodales ut etiam sit amet nisl purus in. Elit ut aliquam purus sit amet luctus venenatis lectus. At volutpat diam ut venenatis tellus in metus vulputate.
Fermentum et sollicitudin ac orci phasellus egestas tellus. Amet dictum sit amet justo donec enim. Iaculis nunc sed augue lacus viverra vitae. Pharetra pharetra massa massa ultricies mi quis hendrerit dolor magna. Vel fringilla est ullamcorper eget nulla facilisi etiam dignissim diam. Nisi porta lorem mollis aliquam ut porttitor. Vel turpis nunc eget lorem dolor. Lacinia quis vel eros donec ac odio tempor orci dapibus. Mi sit amet mauris commodo quis imperdiet. Porta nibh venenatis cras sed felis. Phasellus faucibus scelerisque eleifend donec pretium vulputate sapien nec sagittis. Volutpat ac tincidunt vitae semper quis lectus nulla.
At tellus at urna condimentum mattis pellentesque. Arcu non sodales neque sodales. Tincidunt ornare massa eget egestas. Ut tortor pretium viverra suspendisse potenti nullam ac tortor vitae. Vestibulum rhoncus est pellentesque elit ullamcorper dignissim. Donec adipiscing tristique risus nec feugiat in. Ut ornare lectus sit amet. Hendrerit dolor magna eget est lorem. Ipsum suspendisse ultrices gravida dictum fusce. Ultricies leo integer malesuada nunc vel risus commodo viverra. Mauris in aliquam sem fringilla. Fermentum odio eu feugiat pretium.
Tellus in metus vulputate eu scelerisque felis imperdiet proin. Eu ultrices vitae auctor eu augue ut lectus. Enim sed faucibus turpis in eu. Hac habitasse platea dictumst quisque sagittis purus. Justo laoreet sit amet cursus. Lobortis mattis aliquam faucibus purus in massa tempor nec feugiat. Mauris pharetra et ultrices neque ornare aenean euismod elementum nisi. Lectus sit amet est placerat. Vulputate enim nulla aliquet porttitor lacus luctus accumsan. Odio pellentesque diam volutpat commodo sed egestas. Sapien eget mi proin sed libero. Ut placerat orci nulla pellentesque. Mi quis hendrerit dolor magna eget est. Nunc scelerisque viverra mauris in aliquam. Sapien faucibus et molestie ac feugiat sed lectus vestibulum mattis. Odio ut enim blandit volutpat maecenas volutpat blandit. Cras sed felis eget velit aliquet sagittis id consectetur purus. Porta nibh venenatis cras sed felis eget velit. Imperdiet proin fermentum leo vel. Tempus egestas sed sed risus pretium quam vulputate dignissim suspendisse.
Lorem ipsum dolor sit amet consectetur adipiscing elit duis tristique. Nunc consequat interdum varius sit amet mattis vulputate enim. Faucibus et molestie ac feugiat sed lectus vestibulum mattis. Massa sed elementum tempus egestas sed sed. Nunc consequat interdum varius sit amet. Neque vitae tempus quam pellentesque nec. Cursus metus aliquam eleifend mi. Eu scelerisque felis imperdiet proin fermentum leo vel orci. Quam elementum pulvinar etiam non quam lacus suspendisse faucibus interdum. Non enim praesent elementum facilisis leo vel fringilla. Nisi vitae suscipit tellus mauris a diam maecenas sed. Lorem sed risus ultricies tristique nulla. Elementum facilisis leo vel fringilla. Ut tortor pretium viverra suspendisse potenti. Diam in arcu cursus euismod quis viverra. Mattis vulputate enim nulla aliquet porttitor. Lorem ipsum dolor sit amet consectetur adipiscing. Libero id faucibus nisl tincidunt eget nullam non. Libero nunc consequat interdum varius.
Lorem ipsum dolor sit amet, consectetur adipiscing elit, sed do eiusmod tempor incididunt ut labore et dolore magna aliqua. Gravida dictum fusce ut placerat. Convallis aenean et tortor at. Mauris sit amet massa vitae. A condimentum vitae sapien pellentesque habitant morbi tristique senectus et. Malesuada nunc vel risus commodo viverra maecenas accumsan lacus. Magnis dis parturient montes nascetur ridiculus. Volutpat sed cras ornare arcu dui vivamus arcu felis. Neque sodales ut etiam sit amet nisl purus in. Elit ut aliquam purus sit amet luctus venenatis lectus. At volutpat diam ut venenatis tellus in metus vulputate.
Fermentum et sollicitudin ac orci phasellus egestas tellus. Amet dictum sit amet justo donec enim. Iaculis nunc sed augue lacus viverra vitae. Pharetra pharetra massa massa ultricies mi quis hendrerit dolor magna. Vel fringilla est ullamcorper eget nulla facilisi etiam dignissim diam. Nisi porta lorem mollis aliquam ut porttitor. Vel turpis nunc eget lorem dolor. Lacinia quis vel eros donec ac odio tempor orci dapibus. Mi sit amet mauris commodo quis imperdiet. Porta nibh venenatis cras sed felis. Phasellus faucibus scelerisque eleifend donec pretium vulputate sapien nec sagittis. Volutpat ac tincidunt vitae semper quis lectus nulla.
At tellus at urna condimentum mattis pellentesque. Arcu non sodales neque sodales. Tincidunt ornare massa eget egestas. Ut tortor pretium viverra suspendisse potenti nullam ac tortor vitae. Vestibulum rhoncus est pellentesque elit ullamcorper dignissim. Donec adipiscing tristique risus nec feugiat in. Ut ornare lectus sit amet. Hendrerit dolor magna eget est lorem. Ipsum suspendisse ultrices gravida dictum fusce. Ultricies leo integer malesuada nunc vel risus commodo viverra. Mauris in aliquam sem fringilla. Fermentum odio eu feugiat pretium.
Tellus in metus vulputate eu scelerisque felis imperdiet proin. Eu ultrices vitae auctor eu augue ut lectus. Enim sed faucibus turpis in eu. Hac habitasse platea dictumst quisque sagittis purus. Justo laoreet sit amet cursus. Lobortis mattis aliquam faucibus purus in massa tempor nec feugiat. Mauris pharetra et ultrices neque ornare aenean euismod elementum nisi. Lectus sit amet est placerat. Vulputate enim nulla aliquet porttitor lacus luctus accumsan. Odio pellentesque diam volutpat commodo sed egestas. Sapien eget mi proin sed libero. Ut placerat orci nulla pellentesque. Mi quis hendrerit dolor magna eget est. Nunc scelerisque viverra mauris in aliquam. Sapien faucibus et molestie ac feugiat sed lectus vestibulum mattis. Odio ut enim blandit volutpat maecenas volutpat blandit. Cras sed felis eget velit aliquet sagittis id consectetur purus. Porta nibh venenatis cras sed felis eget velit. Imperdiet proin fermentum leo vel. Tempus egestas sed sed risus pretium quam vulputate dignissim suspendisse.
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I know this is my second post in less than 30 days! I think I have too much free time on my hands while practicing this social distancing routine! Today I will catch up with what’s happening in PD School 2020 and talk a bit about how I have implemented what I’ve learned so far. If you aren’t aware of Dr. Mischley’s PD School 2020 you can read more about it my posts here and here. And check out the coupon offer at the end of this post!
The last lesson I covered was lesson 3 so I will quickly catch you up on lessons 4, 5, 6 & 7 just touching on highlights and things I found interesting. Lessons 4 and 5 cover the topics of food and nutrition. Lesson 4 discusses what to eat and lesson 5 discusses when and how to eat. In lesson 4 Dr Mischley covers foods that are “Good” for PwP and also foods that are “Bad” for PwP. The data to support the designation comes from the ongoing longitudinal research trial she runs at Bastyr University.
The good foods below are listed in order of decreasing impact, that is fresh vegetables had a greater impact than fresh fruit and so on.
Fresh vegetables
Fresh fruit
Nuts and seeds
Fish (not fried)
Wine (yessssssssssssssss!)
Olive oil
Coconut oil
Fresh herbs
The bad foods below are listed in order of greatest negative impact.
Canned fruit
Diet soda
Fried foods
Ice cream (noooooooooooo!)
Canned vegetables
Beef
Pasta
Soda
She also discusses how eating can impact medication absorption particularly when you eat protein just before or just after taking your meds. Various diets are discussed and her recommendation is go as vegan as you can and follow the Mediterranean diet.
Lesson 6 discussed the laboratory tests she requests for her patients. Several of the tests are not normally requested by your neurologist or PCP and some are not covered by insurance or Medicare. She notes at the end of the lesson that she is working on trying to set something up to provide the test to any PwP at a reduced rate (she hopes around $500 instead of $2000).
I was interested in this lesson because she pointed out that most PwP’s are low in both vitamins D and B12. A B12 deficiency can result in neuropathy, cognitive decline and loss of sense of smell. In addition tremor, trouble walking and balance may also be effected. Vitamin D deficiency can result in constipation, falls and balance issues, depression and cognitive decline.
I have been taking both B12 (120mg) and D (2000 iu) supplements for the last several years. My PCP tested me for both vitamins this year and I was within range as far as the lab was concerned. Dr Mischley provides her recommended reference range for the tests and I am below her recommended range in both. I was particularly surprised at the vitamin D result with all the sunshine I get here playing tennis, etc. Looks like I need to increase my supplement amounts of both vitamins.
She covers several other lab tests she conducts and why and I think you will find this lesson very interesting.
Lesson 7 discusses gut and intestinal health. This lesson includes a presentation by Dr Samantha Evans who practices with Dr Mischely in Seattle. Dr Mischely provides the introduction and overview pointing out that 50% of the dopamine neurons are located in your intestinal tract. She also discusses the need for gastric acid to breakdown food and medications. She points out as we get older the gastric juice becomes less acidic and recommended taking our medication with a glass of water mixed with 500 mg powered vitamin C to increase the acid level.
Dr Evans discusses how much of what happens in the intestinal tract impacts PwP’s. She discusses SIBO (Small Intestine Bacteria Overgrowth) and Leaky Gut and how it impacts PwP, particularly medication absorption issues.
So there are a few highlights from lessons 4,5,6, and 7. The next class is Do I need to take supplements? and will be available on the 28th of the month.
Quick timeout for some fine print! Before I discuss how I have implemented parts of these classes I just want to remind everyone I am not a medical practitioner and you shouldn’t rely on the information below as an alternative to medical advice from your doctor or other professional healthcare providers. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on It Is What It Is .
And we are back.
I have enjoyed these classes and have started trying to put some of what I have learned in to practice. In lesson 2, Dr Mischley discusses the success she has had with treating dyskinesia with high doses of DHA fish oil for 30 days and then adding CDP Citicoline twice a day to improve absorption of Levadopa. Since we eat salmon 4-6 days a week, I decided to test taking the CDP Citicoline as she recommended (2 250 mg capsules twice a day).
I began the test on February 2 and tracked the effects daily through April 4. As she mentioned in the lesson, my dyskinesia actually started getting worse because the supplement was improving the uptake of the medication and after 3 weeks I started to slowly reduce the amount of Sinement,Rytary and Mirapex over the next two months. My goal was to reduce my levadopa intake, reduce dyskinesia and not increase off periods.
By April 4 I had reduced the Mirapex from 1.5 mg to .5 mg (67%) and my Sinement from 2.5 tablets 3 times a day to 2 tablets 3 times a day (20% reduction). My dyskinesia is barely noticeable and off episodes are unchanged. I believe I could stop taking the Mirapex completely except the .5 mg helps reduce my restless leg syndrome which I had before my PD diagnoses but went away with the Mirapex which is also prescribed for restless leg.
I have also tried to do a better job of not taking meds too close to mealtime particularly high protein meals. And I have reduced my dairy intake, even ice cream! I’ve ordered some powered vitamin C which should arrive next week and I will test out taking medications with water mixed with vitamin C. Now if I could just figure out how to get Dr Mischely to remove ice cream from the bad food list!!
Just In!! It’s Parkinson’s Awareness Month and Dr Mischley is offering a coupon for $50 off the PC School for this month (All 24 courses for $100). If you haven’t signed up or have friends or relatives that might find this program useful, please send them this link to the course and the coupon code: AWARENESS. http://pd-school.teachable.com/
