“Stop taking identity in illness and start taking identity in wellness” Nina Leavins
“The thought of hope is the seed to healing.” Shilpa Menon
Précis: Several of you have asked for an update on my strategy for treating my Parkinson’s. My current plan consists of traditional Parkinson’s medication, augmented by a complementary and alternative medicine (CAM) approach, and supplemented by exercise.
Is current Parkinson’s therapy similar to the new models of personalized medicine?: Those of us with Parkinson’s have a constellation of symptoms that vary from person-to-person. There is no doubt that people with Parkinson’s have a movement disorder with unifying clinical features. However, expression and rate of progression of the common physical symptoms (rigidity; slowness of movement; postural instability and gait problems; and tremor) differ in each of us. This degree-of-difference in how we express our Parkinson’s is likely a combination of environmental influences [both internal (physiologic) and external (life-style)] and genetics.
Ask 10 people with Parkinson’s to describe their symptoms and their therapy; I wouldn’t be surprised if you get 10 (slightly) different answers. In someway we are lucky (okay, relieved is likely a better word choice) because we received the diagnosis, we began being treated, and probably we started feeling better.
There is a new (and developing) trend in treating patients using a more personalized approach aimed at preventing disease with individualized treatment once the disease is diagnosed (and includes individual genetic tests). This is called personalized medicine or precision medicine (‡given at the bottom is a fuller definition). Although there is no specific genetic test for the most common form of Parkinson’s (termed idiopathic or sporadic), I believe our neurologists are already using a form of personalized medicine to manage our individual and varied (but still somewhat similar) symptoms.
“When you got a condition, it’s bad to forget your medicine.” Frank Miller
“If you suspect that you have Parkinson’s, knowing for certain will be much better than uncertainty.” Glenna Wotton Atwood
My Parkinson’s treatment strategy involves traditional drugs, complementary and alternative medicine (CAM), and exercise: Compared to others, my treatment plan may seem relatively simple. It has been devised by many conversations with my Neurologist and Internist. Combined with a lot of reading and internet searching of the medical literature on what has worked in Parkinson’s treatment, the CAM list continues to evolve and be refined [e.g., I believe that NAC travels to the brain in a usable form to then boost intracellular glutathione levels.]. The diagram below presents an overview of the strategy for treating my Parkinson’s.
-Dopamine agonists: For the past two years I’ve been taking the dopamine agonist Ropinirole. Recently, we decided to add the Neupro transdermal patch, which is another dopamine agonist (Rotigotine). By using the dopamine agonist patch, the thought is to normalize the amount of dopamine agonist in my body throughout the day (i.e., smooth out the peaks and valleys). I have tried to draw it schematically below.
–Isradipine: An FDA-approved calcium-channel blocker (CCB) named Isradipine penetrates the blood brain barrier to block calcium channels and potentially preserve dopamine-making cells. Isradipine may slow the progression of Parkinson’s. The primary use of Isradipine is in hypertension; thus, to treat my pre-hypertension I switched from the diuretic Hydrochlorothiazide to the CCB Isradipine. A CCB is a more potent drug than a diuretic; importantly, my blood pressure is quite normal now and maybe I’m altering the progression of my Parkinson’s. [Please consult with your physician before taking any type of new medication.]
-Complementary and Alternative Medicine (CAM): “Complementary and alternative medicine (CAM) is the term for medical products and practices that are not part of standard medical care. ‘Complementary medicine’ refers to treatments that are used with standard treatment. ‘Alternative medicine’ refers to treatments that are used instead of standard treatment.” (http://www.cancer.gov/cancertopics/cam). My CAM strategy for treating Parkinson’s goes as follows: compounds (reportedly) able to penetrate the blood brain barrier; compounds (possibly) able to slow progression of the disorder; compounds that are anti-oxidative and anti-inflammatory; compounds that don’t adversely alter dopamine synthesis/activity; and compounds that support general brain/nervous system health. [Please consult with your physician before taking any type of supplements.]
-Exercise: Exercise improves flexibility, builds muscle mass, aids sleep, and reduces stress. Exercise is neuroprotective in Parkinson’s (see: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3136051/ and http://www.neurology.org/content/77/3/288 and http://www.ncbi.nlm.nih.gov/pubmed/21375602 ). For anyone with Parkinson’s, it is important to stretch and exercise on a very regular basis. Brian Lambert remarked: “With Parkinson’s, exercise is better than taking a bottle of pills. If you don’t do anything you’ll just stagnate.” My strategy is relatively simple, make time in each day to exercise (it’s that important): stretch every couple of hours (the exercises in LSVT BIG are fantastic); and try to exercise every day for 30-60 minutes (playing/walking 18 holes of golf takes ~4-5 hr). I do a lot of exercises with range of motion sports like golf and boxing on a reflex bag (more tennis this summer). Most importantly, I do exercises that I really enjoy doing and it brings a lot of enjoyment to the way my body feels. [Please consult with your physician before beginning any new exercise routine.]
-The Table below summarizes my approach to managing my Parkinson’s:
*Footnote to Table: Medical (MED), Experimental (EXP), Complementary and alternative medicine (CAM), Exercise (EXERC).
-Past References: In previous posts linked here, I have described various aspects of my treatment strategy (click on word/phrase): first treatment plan; complementary and alternative medicine (CAM); Isradipine; exercise-1; exercise-2; exercise-3; LSVT BIG.
“Exercise is king. Nutrition is queen. Put them together and you’ve got a kingdom.” Jack LaLanne
“There’s always a moment that separates the past from the future, and that moment is now.” Aniekee Tochukwu
Managing Parkinson’s: While we wait for a cure, we manage our disorder by many methods. While we wait for the potion that slows progression, we exercise and remain hopeful. While we live with a neurodegenerative disorder, we strive to remove the label and we stay positive.
Please stay involved in managing your disorder.
Please work with your Neurologist to develop your own ideal strategy.
Please stretch and exercise, it’ll make a difference.
Please use hope and positivity to remain focused and persistent.
Please use loved ones and support team to help sustain your treatment plan.
What you do in managing your disorder will help you today and for many more future days.
“We look for medicine to be an orderly field of knowledge and procedure. But it is not. It is an imperfect science, an enterprise of constantly changing knowledge, uncertain information, fallible individuals, and at the same time lives on the line. There is science in what we do, yes, but also habit, intuition, and sometimes plain old guessing. The gap between what we know and what we aim for persists. And this gap complicates everything we do.” Atul Gawande
‡”Personalized medicine is a medical model that separates patients into different groups—with medical decisions, practices, interventions and/or products being tailored to the individual patient based on their predicted response or risk of disease.” (https://www.google.com/search?q=personalied+medicine&ie=utf-8&oe=utf-8#q=personalized+medicine)
Brain image modified from: http://cdn.playbuzz.com/cdn/bb0810a8-aeff-403b-b38a-e1e9fc9f7c81/79502c61-ec41-4802-8e22-92a0ddc0cc20.jpg