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
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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.
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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.
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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.
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.
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.
The bad foods below are listed in order of greatest negative impact.
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/