The Parkinson’s Perspective is a bi-monthly publication of Parkinson’s Resources of Oregon. Articles and content are provided to connect people with Parkinson’s disease and their families with programs, services and information as they manage symptoms of PD.
8
MAY/JUNE 2016 MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG PAGE 1 THE PARKINSON’S PERSPECTIVE Newsletter Volume 36, Issue 3 May/June 2016 Serving OR and S. WA PROTEIN REDISTRIBUTION DIET ENSURING MAXIMUM ABSORPTION OF L-DOPA - CONTRIBUTED BY CHRISTA KNOX, MA MSCN When digested, protein is broken down into the building blocks of life - amino acids. They give cells their structure, transport nutrients, and they have an influence on the funcon of organs, neurotransmiers, glands, tendons and arteries.1 Amino acids also are essenal for healing wounds and repairing ssue. There’s only one problem though…the amino acids in protein compete with the absorpon of Leva-Dopa.2 What does this mean exactly? Your body is very protecve of what can get into your central nervous system. It has a blood brain barrier (BBB) to regulate substances that can enter your neurological system. The issue at hand is that L-Dopa uses the same transporter to enter the brain as do long chain amino acids, which are found in certain sources of protein.2 When they both arrive at the BBB at the same me and knock, the gatekeepers of the BBB can let only one in at a me, and the amino acids are priorized, leaving your L-Dopa unable to cross the BBB and, in turn, it becomes an ineffecve partner in the management of your PD symptoms.3 The good news though, is that you can me your protein around your medicaon so you can have the body-supporng protein and the benefits of L-Dopa. This ming will ensure that they knock on the BBB door at different mes. This way of eang is called the Protein Redistribuon Diet (PRD).4 Amino Acids & Protein Protein from different sources contain different amino acid composions, so it is important to vary the protein you eat, as our bodies can only make about half of the amino acids. The others are essenal amino acids and must come from the food we eat. The American guidelines for protein are 0.8 g/kg body weight (0.36g/ pound).1,5,6 Complete protein sources are foods that contain all nine essenal amino acids. Sources of complete proteins include: meat, dairy, poultry, fish, seafood, eggs, the grain quinoa (keen-wah), and soy. Plant-based (incomplete) proteins include: beans, seeds, nuts, tempeh, tofu, green leafy vegetables such as spinach, broccoli, chia and hemp seeds, lenls, and hummus. Combine plant proteins to get all of your essenal amino acids.7 These foods do not need to be eaten during the same meal - just over the course of the day (i.e., have rice in the morning and beans with dinner). And remember that interference with L-Dopa is greater with meat proteins than plant proteins. This is due to the fact that meat proteins are more slowly absorbed than plant proteins, and they contain larger amino acids.1 Protein Redistribuon Diet The American Academy of Neurology recommends the redistribuon of daily protein meal content to PD paents during L-Dopa treatment.4 They found that there was not enough evidence to support the use of a limited protein diet and that the response to a PRD was tolerated well. Overall, PRD resulted in improved motor funcon.4 By restricng protein during the day, when a person needs to be acve, the effects of L-Dopa are maximized. If not following the PRD, try to take L-Dopa one hour before or aſter meals to improve the (connued on page 2)
Transcript
MAY/JUNE 2016 MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG PAGE 1
THE PARKINSON’SPERSPECTIVENewsletter
Volume 36, Issue 3 May/June 2016 Serving OR and S. WA
PROTEIN REDISTRIBUTION DIETENSURING MAXIMUM ABSORPTION OF L-DOPA - CONTRIBUTED BY CHRISTA KNOX, MA MSCN
When digested, protein is broken down into the building blocks of life - amino acids. They give cells their structure, transport nutrients, and they have an influence on the function of organs, neurotransmitters, glands, tendons and arteries.1 Amino acids also are essential for healing wounds and repairing tissue.
There’s only one problem though…the amino acids in protein compete with the absorption of Leva-Dopa.2 What does this mean exactly? Your body is very protective of what can get into your central nervous system. It has a blood brain barrier (BBB) to regulate substances that can enter your neurological system. The issue at hand is that L-Dopa uses the same transporter to enter the brain as do long chain amino acids, which are found in certain sources of protein.2 When they both arrive at the BBB at the same time and knock, the gatekeepers of the BBB can let only one in at a time, and the amino acids are prioritized, leaving your L-Dopa unable to cross the BBB and,
in turn, it becomes an ineffective partner in the management of your PD symptoms.3 The good news though, is that you can time your protein around your medication so you can have the body-supporting protein and the benefits of L-Dopa. This timing will ensure that they knock on the BBB door at different times. This way of eating is called the Protein Redistribution Diet (PRD).4
Amino Acids & Protein
Protein from different sources contain different amino acid compositions, so it is important to vary the protein you eat, as our bodies can only make about half of the amino acids. The others are essential amino acids and must come from the food we eat. The American guidelines for protein are 0.8 g/kg body weight (0.36g/pound).1,5,6 Complete protein sources are foods that contain all nine essential amino acids. Sources of complete proteins include: meat, dairy, poultry, fish, seafood, eggs, the grain quinoa (keen-wah), and soy. Plant-based (incomplete) proteins include: beans, seeds, nuts, tempeh, tofu, green leafy vegetables such as spinach, broccoli,
chia and hemp seeds, lentils, and hummus. Combine plant proteins to get all of your essential amino acids.7 These foods do not need to be eaten during the same meal - just over the course of the day (i.e., have rice in the morning and beans with dinner). And remember that interference with L-Dopa is greater with meat proteins than plant proteins. This is due to the fact that meat proteins are more slowly absorbed than plant proteins, and they contain larger amino acids.1
Protein Redistribution Diet
The American Academy of Neurology recommends the redistribution of daily protein meal content to PD patients during L-Dopa treatment.4 They found that there was not enough evidence to support the use of a limited protein diet and that the response to a PRD was tolerated well. Overall, PRD resulted in improved motor function.4 By restricting protein during the day, when a person needs to be active, the effects of L-Dopa are maximized. If not following the PRD, try to take L-Dopa one hour before or after meals to improve the
(continued on page 2)
MAY/JUNE 2016 MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG PAGE 2
PROTEIN REDISTRIBUTION DIET (continued from page 1)
absorption of the medication.
With the PRD, 7-10g of protein comes from your breakfast, lunch, and snacks. For example, say you needed 54g of protein per day, based on your body size. You would save 44g of protein to eat in the evening. The other 10g would be divided up throughout the day. A great way to keep track and calculate your daily protein (and calorie) total is with an app like MyFitnessPal (myfitnesspal.com). During the day, try incorporating more healthy fats into your diet like olives, avocados, and coconut. This will help you to eat fewer refined carbohydrates, which will spike your blood sugar and contribute to a host of medical issues, including diabetes and Alzheimer’s Disease.8 Healthy fats will keep you full during the day, are low in protein, and taste delicious!
ConclusionDo not avoid protein for fear that it will interfere with your medication, as protein is a key player in your health. You don’t have to eliminate protein to see results from L-Dopa - you just have to think ahead a little. And, when you’re hungry, reach for something satisfying - something real. Steer clear of foods with refined grains, sweeteners, and foods with more than 6 ingredients and/or ingredients you can’t pronounce. Look into a modified-ketogenic diet to support your system - the lower protein content will not interfere with L-Dopa, you will be satiated, nourished, and your thinking will be sharp as a tack.8,9 Use the building blocks from protein to support you from the inside out. Go ahead, you can now have your protein and eat it too!
References:1. Lukaczer D. Clinical Nutrition, A Functional Approach. IFM; 2004. 2. Cucca A, Mazzucco S, Bursomanno A, et al. Amino acid supplementation in l-dopa treated Parkinson’s disease patients. Clin Nutr. 2015;34(6):1189-94.3. Fernstrom JD. Branched-chain amino acids and brain function. J Nutr. 2005;135(6 Suppl):1539S-46S.4. Cereda E, Barichella M, Pedrolli C, Pezzoli G. Low-protein and protein-redistribution diets for Parkinson’s disease patients with motor fluctuations: a systematic review. Mov Disord. 2010;25(13):2021-34.5. Trumbo P, Schlicker S, Yates AA, Poos M; Food and Nutrition Board of the Institute of Medicine, The National Academies. Dietary reference intakes for energy, carbohydrate, fiber, fat, fatty acids, cholesterol, protein and amino acids. J Am Diet Assoc. 2002;102(11):1621-1630.6. Vilsack T. Dietary Guidelines for Americans. U.S. Department of AgricultureAvailable at: http://health.gov/dietaryguidelines/2015/guidelines/. Accessed March 1, 2016.7. Giroux, Monique L., MD; Giroux, Monique L., MD (2015-11-11). Optimal Health with Parkinson’s Disease: An Integrative Guide to Complementary, Alternative, and Lifestyle Therapies for a Lifetime of Wellness (Kindle Locations 2568-2582). Springer Publishing Company. Kindle Edition. 8. Crane PK, Walker R, Hubbard RA, et al. Glucose levels and risk of dementia. N Engl J Med. 2013;369(6):540-8.9. Gasior M, Rogawski MA, Hartman AL. Neuroprotective and disease-modifying effects of the ketogenic diet. Behav Pharmacol. 2006;17(5-6):431-9.
Like many of our clients and supporters at PRO, Carl Anderson understands that keeping programs and services viable, relevant, and readily accessible takes the efforts of many. Growth and excellence are accelerated when each of us contributes as we can. A long-time supporter of PRO, Carl has recently taken steps to help ensure the future of the programs he and others count on. After much reflection with his wife, Carl has made a commitment to impacting a cause dear to him by dedicating all proceeds from the sale of his custom Shoebox toward PRO. “We are tremendously moved by Mr. Anderson’s unbelievably generous gesture. Not only due to the dollars raised having such a deep impact on our services, but it means so much more when someone shares something which means so much
with us. In this case, it is a part of his past and present, and will be a part of PRO’s tomorrow.” Holly Chaimov, PRO Executive Director. This custom build 1950 Ford two-door sedan has been lovingly cared for, is in impeccable condition, and is a five trophy winner at the Portland Roadster Show. Do you know it’s next owner? Help us by sharing this info with any car-lovers or collectors you know! You can find the 1950 Ford listed on Hemmings or contact Lauren Tietsort, PRO Development Director if you are interested in learning more about this opportunity 800.426.6806 or [email protected]. Have an idea of your own to take action and support the programs and services so many rely on? We’d love to hear from you!
FROM THE HEART TO THE STREETSDONOR FINDS CREATIVE WAY TO SUPPORT PRO
MAY/JUNE 2016 MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG PAGE 3
Dr. Victoria Holiday is conducting a research study looking at the effect and the safety (side effects) of buspirone in combination with amantadine on abnormal involuntary movements (dyskinesias) in Parkinson’s disease (PD). In order to take part in this study, participants must: have PD, take at least 200 mg of Amantadine a day, and started taking levodopa more than three (3) years ago. This study will last for 6 weeks with 4 of those weeks on study drug and require seven (3) visits to the VA Portland Health Care System. The first visit lasts approximately 2 – 3 hours and involves general physical, neurological, and
Parkinson’s disease specific examinations, and assessments of your abnormal movements. If you do not meet the criteria for abnormal movements in the study, you may not be randomized or receive study drug. You will then be given study drug (or placebo) and after two weeks, you will return to the Portland VA for a 6 hour study visit from 08:30 am to 2:30 pm. All participants will take the study drug (buspirone) and the placebo.
This is a double-blinded study which means that you and the research staff will not know what study treatment you are taking
at any point. You will not be compensated for participation in this study. This is a research study and not for treatment or diagnosis of PD. You may not benefit from participating in this study but will have a no cost neurological exam. However, by serving as a subject, you may help us learn how to benefit patients in the future. For more information on how to participate, please contact Brenna Lobb, Research Coordinator, at (503) 220-8262 extension 51871 or by mail at 3710 SW US Veterans Road, P3-PADRECC, Portland, Oregon 97239.
In news of interest to Parkinson’s patients and families, The Michael J. Fox Foundation for Parkinson’s Research (MJFF) and the Parkinson’s Action Network (PAN) have announced their intention to operate as a single organization to advance public policy priorities and better treatments for people living with Parkinson’s disease (PD).
“The priorities of people with Parkinson’s define the work of both MJFF and PAN,” said Ted Thompson, president and CEO of PAN from 2014 to 2016 and incoming senior vice president of public policy at MJFF. “Working as a single entity, we can use our joint expertise to move the needle on policy issues that matter most for those living with the disease today.”
Todd Sherer, PhD, MJFF CEO, said, “The Parkinson’s research and care landscapes have changed significantly over the last decade, and as a result, so have the policy and advocacy priorities of people living with the disease.”
One outcome from the change is the creation of a Unified Parkinson’s Advocacy Council to help ensure a well-informed approach to shaping programmatic activity
in public policy on behalf of Parkinson’s patients and families. Oregon and SW Washington will be well represented with a voice in shaping policy as our regional volunteer representatives remain in place and PRO Executive Director, Holly Chaimov has joined the Advisory Council. Thank you to our volunteer representatives, Kevin Mansfield, State Director and Nancy Crocker, Larry Helms, and Cheri Corder Mansfield who all serve as Associate State Directors.
PAN AND MJFF ANNOUNCE MERGERTHE PARKINSON’S RESEARCH AND CARE LANDSCAPES HAVE CHANGED SIGNIFICANTLY OVER THE LAST DECADE,
AND AS A RESULT, SO HAVE THE POLICY AND ADVOCACY PRIORITIES OF PEOPLE LIVING WITH THE DISEASE
BUSPIRONE, IN COMBINATION WITH AMANTADINE, FOR THE TREATMENT OF LEVODOPA-INDUCED DYSKINESIA
MAY/JUNE 2016 MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG PAGE 4
PORTLAND Lunchtime Lecture: Importance of Staying SocialFriday May 6th at Legacy Good Samaritan
Avoiding isolation and withdrawal in the face of Parkinson’s is as important as it can be hard to accomplish. Join PRO Social Worker, Tony Borcich and learn what the literature has to say on this topic and take away methods to include socialization as part of your personal treatment plan.
EUGENE Lecture: Speech & Swallowing SeriesWednesday May 18th Waterford Grand
This is the second in a four part series exploring indicators, symptoms and therapies to improve voice and swallowing problems. Local Speech Language Pathologist, Drew Douglass will bring focus to how Parkinson’s affects voice.
BEAVERTON Strive to Thrive: Self-Management Program for Parkinson’s diseaseNext session begins May 31st in Beaverton 12:20 pm to 2:50 pm ($25 materials fee)
Strive to Thrive is being offered in a partnership between Parkinson’s Resources of Oregon (PRO) and The Parkinson Center of Oregon at OHSU (PCO). Based upon the Chronic Disease Self-Management Program (CDSMP) developed at Stanford University,
Strive to Thrive will combine the proven self-efficacy theory of the CDSMP with the synergy of learning with and from people managing the same diagnosis of Parkinson’s disease.
Participants (individuals with PD as well as care partners) will learn techniques necessary for managing chronic disease and can expect to leave the program with skills for self-monitoring, problem-solving, making informed decisions, and taking action to engage in healthy behaviors. Published research on CDSMP indicates measureable improvements in health and quality of life. Past participants would agree! Marilee tells us that while she was aware of some of the things from the class, it helped her focus on things that needed to be improved and “it gave me a little push to do so” and Charlie says that “it kicks ya in the keister” to do the things you know you should be taking care of.
This is a 7 week curriculum, class participants should be able to commit to availability for the entire course as lessons build upon each other and participants rely upon each other for goal setting and accountability.
EUGENE Creative Self-Care Workshops Friday May 20th for People with Parkinson’sFriday June 3rd for Carepartners
This workshop is designed to promote good self-care, balance, relaxation, creativity and joy. Participants will explore various art
media with the support of the facilitator, while using gentle prompts, thematic suggestions or quotes to inspire the art process and taking good care of yourself.
This is an opportunity to focus on the process and enjoyment of art making, engage in self-care, and creatively express yourself in a supportive community atmosphere. No art experience necessary!
Basic art materials will be provided, including: drawing materials, paint, collage, clay and found objects. Materials fee: $8
BEND Educate. Inspire. Empower.Saturday May 14th, St. Charles Medical Center, Bend ORJoin us for the final segment of our Spring Conference Series as we focus on managing non-motor symptoms and learn how diet and mindfulness can help you gain an element of control in living with PD. $15 registration. www.pro.eventbrite.com
GRESHAM Family Caregiver ConferenceSaturday June 4th Providence Elderplace
We are pleased to be in our fourth year of partnership with Providence Elderplace in offering a workshop just for family caregivers. Practical and focused, the conference is being offered at no cost although pre-registration is required (www.pro.eventbrite.com)
Topics covered in the 2016 Carepartner program are:Caregiving for Someone with Non-Motor Symptoms• Depression, Anxiety, ApathyCaregiving for Someone with DementiaCaregiving for Someone Who Is Incontinent• Including universal precautions
EUGENE Find Your Motion!June 29th at Willamette Oaks
Join PRO, volunteers and our local exercise professionals for an opportunity to experience several PD appropriate exercise
CALENDAR OF EVENTSPLEASE STAY IN TOUCH VIA EMAIL, FACEBOOK, TWITTER, THIS NEWSLETTER,
AND OUR EVENT REGISTRATION SITE. WWW.PRO.EVENTBRITE.COM
MAY/JUNE 2016 MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG PAGE 5
options available in Lane county. Rotate through mini classes of different styles and talk with the local instructors.
VANCOUVER Save the Date!
July 18th at Legacy Salmon Creek Hospital Dr. Kieran Tuck with present on Pain Management for People with Parkinson’s disease.
NEWPORT Save the Date!
July 22nd in Newport at the Samaritan Center for Health Education. Join PRO and Dr. Richard Rosenbaum for an informative presentation on non-motor aspects of Parkinson’s disease.
THE PORTLAND COUNTDOWNFree series of podcasts – with new releases each month between now and September 2016. Recent and upcoming topics include Stem Cell Therapy, Placebo Effect, & Sleep. Hosted by two acclaimed journalists (who also happen to have Parkinson’s). Access current and past episodes at: www.wpc2016.org/portandcountdown
MAY/JUNE 2016 MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG PAGE 6
PARKINSON’S COMEDY
Sometimes it’s hard to tell what’s funny and what’s not. It really is not funny to have a progressive neurological disease. Then, again, there are funny moments and it’s funny when language gets turned on its head. Like, the term progressive. Generally progressing is a good thing. I’m strutting around puffed up and proud of progress in my accomplishments! And, when I see my neurologist, I am looking forward to hearing how quickly my Parkinson’s has progressed! But, no, wait! I don’t want that kind of progress! I take it back! I’m so confused! My husband is confused, too. Despite 28 years of marriage, he still likes to think of himself as my boyfriend. And now he’s my caregiver! What’s up with that? I decided to be a good citizen and participate in a clinical trial. My caregiver had a piece in it, too. He got a survey with questions like, “What is your preferred method of mopping up your person-living-with-Parkinson’s drool? Paper towel or something else?” Another question was, “Do you have to bathe and dress your person-living-with-Parkinson’s?” A few years ago that might have been a really sexy question, but these researchers are clearly not a fun bunch! Recently I’ve started placing certain cards strategically in my wallet. Cards that say, “I’m not drunk, I have Parkinson’s!” If I get stopped by the police I can just give them my Not Drunk card and everything is good! Can’t walk a straight line? Finger can’t find your nose? Shaking like a leaf? I wish I was partying, but I really just need my meds! So, send me home unless you are packing extra Sinemet! And how do you tell non-Parkies that you have Parkinson’s? I didn’t talk about it for the first three years. Then, I decided to “out” myself. I tried writing on a post-it note: “I have Parkinson’s disease,” handing it to a co-worker and leaving the building. I guess that doesn’t count as a conversation! It’s tempting to say to a co-worker, “ I have Parkinson’s disease. The symptoms are not limited to tremors, but are why I seem
to be stupid. My memory is shot because every night someone breaks into my skull and exchanges my brain for cotton balls. So, if I ask you ten times how to do some simple computer task, just blame it on the Parkinson’s! After my supervisor handed me a Separation Agreement I told her that I had Parkinson’s. She responded that she was relieved because that explained my poor performance. I’m so glad I made her feel better! I will tell you, in all seriousness, that the upside of having Parkinson’s is all the really fabulous other people who have Parkinson’s. I love my Parkinson’s community. I’m in a Parkinson’s table tennis group! It’s really fun! Some of the people living with Parkinson’s are so wonderfully progressed that we have to help them to the table and stand them up with a paddle in their hand. They are great table tennis players! People with Parkinson’s – especially those fabulously progressed ones! – have what is called masking. That means that their facial expressions don’t change. It’s great to see someone who can barely walk play ping pong without any facial expression and knock the socks off of someone who is not-living-with-Parkinson’s! I also enjoy my Parkinson’s dance group. I love dancing beside someone with a walker who can’t speak, but makes it clear to his caregiver that he is not going to sit this dance out! And, I love my straight talking Parkinson’s buddies who came up to me at a day time educational meeting and said, “This is the second time we have seen you at something during the work day! Did you lose your job?” People living with Parkinson’s don’t have time to beat around the bush! When I lost my job, I was so happy to realize that I didn’t have to feel embarrassed or ashamed because my Parkinson’s buddies understood. I was still a person with value who they were happy to see. I could help them to be happy - whether or not they were progressing or getting fired or dancing with their walkers. Our identities are all under assault as are
the identities of our family members. My Parkinson’s is tolerable only because of my family and my fellow people-living-with-Parkinson’s. Thank you! My Parkinson’s has allowed me to see how beautiful you are.
by Nancy Crocker, PwP, Bend
PRO is governed by a volunteer Board of Directors comprised of community members with an interest and passion
for serving the PD community.
BOARD OF DIRECTORS
Officers:
by Nancy Crocker, PwP, Bend
Ian SmethurstBoard President
Greg MooreTreasurer
Lucien Burke, M.D1st Vice President
Kristin WhitneySecretary
Directors at Large:Greg ChailleSusan Flad
George GregoresHank Grootendorst
Gerald HulsmanBarney Hyde
Larry JacobsonPaul Labby
Ryland MooreKay Parr
Joseph Quinn, MDDerek Ranta
Richard Rosenbaum, MDJustin Smith
Kelly SweeneyPeggy Wood
Laurelhurst “PD Avengers” 1st Friday, 10:00 am Bev, 503.535.4988
Longview, WA Area3rd Wednesday, 1:45 pmBarbara, 360.423.7012
McMinnville1st Thursday at 1:00 pmCharles, 503.359.5820
Medford3rd Saturday, 11:00 amJanet, 541.282.7822
Milwaukie3rd Monday, 10:00 amDoug, 503.652.6519
Newberg 3rd Thursday, 10 am John, 503.487.6390 Louise, 971.344.4384
MSA/PSP Support Group Portland3rd Saturday, 10:00 amMarquis Assisted LivingPRO, 800.426.6806PD+ Support Group Eugene2nd Wednesday, 1:30Lori & Gordon, 541.999.0949
Newly Diagnosed?Diagnosed with PD in the last year or two.
Lake Oswego1st Saturday, 10:00 amTom, 503.303.4871Carol, 301.237.0476
Golf Support Group Various times & courses in the greater Portland area as arranged by the groupPaul, 503.313.5013
MAY/JUNE 2016 MORE INFO! (800) 426-6806 - WWW.PARKINSONSRESOURCES.ORG PAGE 7
Family, friends & care partners are welcome at all of our groups.
This newsletter is published six times a year.Articles published in this newsletter are solely for your information and should not be relied on as medical advice.
