Category Archives: Neurodegenerative Disorders

Dopamine Agonist Withdrawal Syndrome (DAWS) in Parkinson’s

“Some remedies are worse than the disease.” Publilius Syrus

“Each patient carries his own doctor inside him.” Norman Cousins

Summary: Dopamine agonists are widely used in the treatment of Parkinson’s, especially as a first-line therapy. Some patients on a dopamine agonist experience side-effects that require either tapering or discontinuation of the drug.  First described in 2010, dopamine agonist withdrawal syndrome (DAWS) is a complication of ~20% of Parkinson’s patients who are either lowering or stopping the dopamine agonist.  DAWS presents as a cluster of physical and behavioral symptoms [e.g., agitation, depression, drug craving, and panic attacks (to give a few possible symptoms)]. There is no known standard-of-care in dealing with DAWS in Parkinson’s. Presented here is a brief overview of DAWS in Parkinson’s including dopamine agonists, clinical description, risk factors and prevalence, mechanism of action, treatment/management, and key publications.

“To heal illness, begin by restoring balance.” Caroline Myss

Dopamine agonists (DA): Dopamine agonists are ‘mimics’ of dopamine that pass through the blood brain barrier to interact with target dopamine receptors. Symptomatic treatment of Parkinson’s remains dopamine replacement, including the DA’s.  Dopamine agonists are frequently the first line of choice for therapy for the just diagnosed Parkinson’s patient. Dopamine agonists do help control motor symptoms in Parkinson’s although there can be significant side-effects (see Table below). Also below is a Table describing DA’s. The DA side effects can become intolerable for some people-with-Parkinson’s, and the decision to taper or withdraw the DA is made. Or maybe you’re a candidate for deep-brain stimulation (DBS) surgery and to calibrate the device you’ll be asked to stop your Parkinson’s medication for a short period of time.

18.01.03.DA+DAWS

18.01.03.DA+DAWS

“I enjoy convalescence. It is the part that makes the illness worth while.” George Bernard Shaw

First report of dopamine agonist withdrawal syndrome (DAWS): Dopamine agonist withdrawal syndrome (DAWS) was first described in 2010 by Rabinak and Nirenberg on five of their patients with non-motor impulse control behavioral disorders (ICD) caused by the DA; thus, they were tapered. Two patients were further described in this publication. The first patient was a 67-year-old woman with a six year history of Parkinson’s, and she had been taking various drugs including a DA. She had developed a difficult ICD, and they elected to taper the DA; unexpectedly, she then had severe anxiety and dysphoria. They tried an increase in carbidopa/levodopa and they used other therapy for cognitive behavior control; to no benefit to the patient. They changed her back to the original DA dose and she had a rapid and dramatic improvement in all of her symptoms. This patient continues to use the DA and remains with the difficult ICD.

Patient #2 was a 61-year-old woman with a six-year history of Parkinson’s and likewise an ICD prompted by the DA; she began a DA tapering with increased carbidopa/levodopa medication.  During the DA taper, she developed depression and severe anxiety and became agitated; she also had fatigue and insomnia.  As with Patient #1, adding back the DA improved all of her non-motor symptoms. It took several years for her to successfully reduce her DA doseage. The figure below visually highlights some of the key symptoms of DAWS.

18.01.04.DAWS_faces

What both cases shared were prominent psychiatric symptoms, poor response to both additional carbidopa/levodopa (to take the place of the DA) and psychiatric medication; however, both had rapid improvement in their ‘new symptoms’ when placed back on the DA. The majority of DAWS symptoms are presented in the the Table below.Document5“The secret of learning to be sick is this: Illness doesn’t make you less of what you were. You are still you.” Tony Snow

Risk-factors and prevalence of DAWS: Since the original study in 2010, there have been several follow-up studies on DAWS. Some of the studies speculated that a large DA dose in the presence of pre-existing ICD are the most important risk factors for DAWS. The ‘number’ talked about frequently is something called the ‘levodopa equivalent daily dose’ (LEDD) of the dopamine agonist, where it has been suggested that >150 mg was linked to an increased risk of DAWS. Use this on-line program to calculate your LEDD (click here).  Here is an LEDD example: someone taking 14 mg ropinirole/day (with the online algorithm), the LEDD would be 280 mg daily.  What? OK, so what did you say?  This means if you wanted to replace the 14 mg/day ropinirole with carbidopa/levodopa you would need about 300 mg per day of levodopa based on this calculation.  I refer you to do the papers cited at the end of the blog post for more details about LEDD. What is interesting is several of the studies have compared the taper versus total withdrawal of the DA; it does not seem to alter the risk of DAWS.  Good news is if you’re not having any detrimental side effects from the DA, just continue on and you’re good to go. The bad news is if you are having some side effects and you want to try and eliminate them by tapering down need to carefully consult with your neurologist and work up a feasible plan.  Please remember I’m a biochemist, not a physician, and I just am interpreting data from publications.

The prevalence of DAWS has been reported to be between 15 and 19% in patients with Parkinson’s; it seems to be consistently about one-in-five.  As mentioned previously, there appears to be no difference in relative risk of DAWS comparing patients that discontinue DA completely or those that reduce the DA by taper. Based on the percentage mentioned above, this says ~4 out of 5 people-with-Parkinson’s can DA taper without any problems.

“It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body.” Marcel Proust

DA mechanism of action to cause DAWS:  To recap, DAWS occurs in a subset of patients with Parkinson’s that have had difficulties managing the side effects of a DA, and the decision has been made to remove that DA from the patient’s regimen.  The simplest notion is that you would then replace the DA with an increased dose of carbidopa/levodopa (using the LEDD); however, this is Parkinson’s and this is the brain and it’s just not going to be that easy. The diagram below summarizes a very simplistic view of dopamine and DA’s in their interactions with motor and reward pathways.  There is no doubt that in treating Parkinson’s, the replacement of dopamine is crucial for many different physiological functions in the human body. Dopamine agonists and dopamine share similar binding properties to dopamine receptors. They are very important in improving motor symptoms (through the nigrostriatal pathway) but there is also some potential detrimental crossover to the reward center (through the mesocorticolimbic pathway).  It is this minor pathway that is linked to the increased risk of ICD in some patients being treated with a DA. It is not clear, however from the data published so far that there is a difference in this 20% of the patient population in their mesocorticolimbic circuitry system with the DA in comparison to the other 80% of the population.  In summary, what causes DAWS during DA tapering is not well understood.18.01.07.Dopamine_Motor_Reward“Medicine is intention. Those who are proficient at using intention are good doctors.” Sun Simiao

Treatment/management of DAWS during DA taper:  DAWS is a relatively recent phenomena related to DA withdrawal.  Patients with (i) a predisposition to ICD and (ii) a larger dose of DA are apparently at increased risk of developing DAWS. There is no well-delineated treatment plan that the neurologist can follow; best recommendation (from the papers cited below) is the patient should be tapered at a very slow dose reduction over a long period of time, and see what happens. Clearly, it is crucial that the patient and the neurologist carefully evaluate signs of ICD and DAWS at every visit, especially for patients at high risk.

“The treatments themselves do not ‘cure’ the condition, they simply restore the body’s self-healing ability.” Leon Chaitow

 Summary: As someone with Parkinson’s, I’ve done a lot of reading about treatment strategies (what’s good and what’s not so good). For someone my age there would almost always be a recommendation to begin the DA (the so-called sparing one of levodopa until it’s absolutely needed) and then as symptoms progressed, you would switch over and combine the DA with carbodipa/levodopa.  Had I read the opinions of Dr. Ahlskog in the beginning, I might have opted to start with carbidopa/levodopa without the DA (Ahlskog JE. Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease. Mayo Clinic Proceedings. 2011;86(12):1211-6. doi: https://doi.org/10.4065/mcp.2011.0443). Biochemically, DAWS is an interesting problem but there needs to be additional studies to delineate the mechanism of action. Finally  DAWS clinically is worrisome and definitely not well-understood; and likely, the scope of DAWS is under-recognized.

Key References:

  1. Rabinak CA, Nirenberg MJ. Dopamine agonist withdrawal syndrome in Parkinson disease. Arch Neurol. 2010;67(1):58-63. doi: 10.1001/archneurol.2009.294. PubMed PMID: 20065130.
  2. Nirenberg MJ. Dopamine agonist withdrawal syndrome and non-motor symptoms after Parkinson’s disease surgery. Brain. 2010;133(11):e155; author reply e6. doi: 10.1093/brain/awq165. PubMed PMID: 20659959.
  3. Cunnington AL, White L, Hood K. Identification of possible risk factors for the development of dopamine agonist withdrawal syndrome in Parkinson’s disease. Parkinsonism Relat Disord. 2012;18(9):1051-2. doi: 10.1016/j.parkreldis.2012.05.012. PubMed PMID: 22677468.
  4. Pondal M, Marras C, Miyasaki J, Moro E, Armstrong MJ, Strafella AP, Shah BB, Fox S, Prashanth LK, Phielipp N, Lang AE. Clinical features of dopamine agonist withdrawal syndrome in a movement disorders clinic. J Neurol Neurosurg Psychiatry. 2013;84(2):130-5. doi: 10.1136/jnnp-2012-302684. PubMed PMID: 22933817.
  5. Edwards MJ. Dopamine agonist withdrawal syndrome (DAWS): perils of flicking the dopamine ‘switch’. J Neurol Neurosurg Psychiatry. 2013;84(2):120. doi: 10.1136/jnnp-2012-303570. PubMed PMID: 22993451.
  6. Nirenberg MJ. Dopamine agonist withdrawal syndrome: implications for patient care. Drugs Aging. 2013;30(8):587-92. doi: 10.1007/s40266-013-0090-z. PubMed PMID: 23686524.1.
  7. Nirenberg MJ. Dopamine agonist withdrawal syndrome: implications for patient care. Drugs Aging. 2013;30(8):587-92. doi: 10.1007/s40266-013-0090-z. PubMed PMID: 23686524.
  8. Solla P, Fasano A, Cannas A, Mulas CS, Marrosu MG, Lang AE, Marrosu F. Dopamine agonist withdrawal syndrome (DAWS) symptoms in Parkinson’s disease patients treated with levodopa-carbidopa intestinal gel infusion. Parkinsonism Relat Disord. 2015;21(8):968-71. doi: 10.1016/j.parkreldis.2015.05.018. PubMed PMID: 26071817.
  9. Huynh NT, Sid-Otmane L, Panisset M, Huot P. A Man With Persistent Dopamine Agonist Withdrawal Syndrome After 7 Years Being Off Dopamine Agonists. Can J Neurol Sci. 2016;43(6):859-60. doi: 10.1017/cjn.2015.389. PubMed PMID: 26842385.
  10. Patel S, Garcia X, Mohammad ME, Yu XX, Vlastaris K, O’Donnell K, Sutton K, Fernandez HH. Dopamine agonist withdrawal syndrome (DAWS) in a tertiary Parkinson disease treatment center. J Neurol Sci. 2017;379:308-11. doi: 10.1016/j.jns.2017.06.022. PubMed PMID: 28716269.
  11. Yu XX, Fernandez HH. Dopamine agonist withdrawal syndrome: A comprehensive review. J Neurol Sci. 2017;374:53-5. doi: 10.1016/j.jns.2016.12.070. PubMed PMID: 28104232.
  12. Solla P, Fasano A, Cannas A, Marrosu F. Dopamine agonist withdrawal syndrome in Parkinson’s disease. J Neurol Sci. 2017;382:47-8. doi: 10.1016/j.jns.2017.08.3263. PubMed PMID: 29111017.

“Life always gives us exactly the teacher we need at every moment. This includes every mosquito, every misfortune, every red light, every traffic jam, every obnoxious supervisor (or employee), every illness, every loss, every moment of joy or depression, every addiction, every piece of garbage, every breath. Every moment is the guru.” Joko Beck

Cover photo credit: f.fwallpapers.com/images/sun-peeking-through-snow-covered-trees.jpg

Agitation- img.aws.livestrongcdn.com/ls-article-image-400/cme/cme_public_images/www_livestrong_com/photos.demandstudios.com/49/85/fotolia_4199215_XS.jpg
Depression- http://www.scientificamerican.com/sciam/cache/file/FCD288AE-5C2E-49F2-85858FA255A8034B_source.jpg
Fatigued- www.belmarrahealth.com/wp-content/uploads/2017/03/fatigue-in-the-elderly-300×200.jpg
Panic attack- lifetimewoman.com/wp-content/uploads/2016/09/panica-1.jpg

Complementary and Alternative Medicine (CAM) and Over-the-Counter Therapies in Parkinson’s

With Parkinson’s, exercise is better than taking a bottle of pills. If you don’t do anything you’ll just stagnate.” Brian Lambert

“With Parkinson’s you have two choices: You can let it control you, or you can control it. And I’ve chosen to control it.” US Senator Isakson

Introduction: Having one of the numerous neurodegenerative disorders can be disheartening, difficult and life-threatening/ending; however, Parkinson’s remains in the forefront of treatment schemes and therapeutic options.  We may have a slowly evolving disorder, yet I remain firmly entrenched both in striking back to try-to-slow its progression and in remaining hopeful that new advances are on the horizon to throttle-back its progression.  Recently, several people have asked for an update on my strategy for treating Parkinson’s.  My plan consists of (i) traditional Parkinson’s medication,  (ii) supplemented by a complementary and alternative medicine (CAM) approach, and (iii) fueled by exercise. My philosophy is simple because I truly believe there are steps I can follow to remain as healthy as possible, which include having a positive mindset to support this effort, and to accept the axiom of the harder I try the better I’ll be.

“Life is to be lived even if we are not healthy.” David Blatt

Complementary and Alternative Medicine (CAM):The National Institutes of Health defines CAM as follows: “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.”  Here is a nice overview of CAM (click here). The National Center for CAM (click here for NCCAM) gives five categories to broadly describe CAM (see below, and followed by some representative components for each of the 5 categories):

17.12.31.CAM_Summary

(1) Alternative medical systems include treatment by traditional Chinese medicine, Ayurveda and naturopathic medicine;
(2) Mind-body interventions like mindfulness meditation;
(3) Biologically-based therapies include over-the-counter natural products and herbal therapies;
(4) Manipulative and body-based methods describe chiropractic and massage therapies;
(5) Energy therapies include techniques such as Reiki and therapeutic touch.

“My way of dealing with Parkinson’s is to keep myself busy and ensure my mind is always occupied.” David Riley

CAM and Parkinson’s: Published CAM clinical trial studies have yielded only a sliver of positive response to slowing the progression of Parkinson’s, several were halted due to no change compared to the placebo-control group. Regardless of these ‘failed’ studies, many have embraced a CAM-based approach to managing their disorder, including me. Please remember that I’m not a clinician, and I’m not trying to convince you to adopt my strategy.  I am a biochemist trained in Hematology but I do read and ponder a lot, especially about Parkinson’s.  We know a lot about Parkinson’s and we’re learning a lot about the molecular details to how it promotes the disease.  There is not a cure although we have a growing array of drugs for therapeutic intervention.  Without a  cure, we look at the causes of Parkinson’s (see schematic below), we consider various CAM options, and we go from there (see schematic below). If you venture into adding to your portfolio of therapy, it is imperative you consult with your Neurologist/family medicine physician beforehand.  Your combined new knowledge with their experience can team-up to make an informed decision about your herb, over-the-counter compound use and its potential benefit/risk ratio.

17.12.31.PD_Cause.CAM“I discovered that I was part of a Parkinson’s community with similar experiences and similar questions that I’d been dealing with alone.”Michael J. Fox

A strategy for treating Parkinson’s: The treatment plan I follow uses traditional medical therapy, CAM (several mind-body/manual practices and numerous natural products) and the glue that ties it all together is exercise.  Presented here is an overview of my medical therapy and CAM natural products. I only list the exercises I am using, not describe or defend them.  Due to my own personal preference for the length of a blog post, I will return to them later this year and include an update of the mind-body/manual practices that I’m currently using. Please note that these views and opinions expressed here are my own. Content presented here is not meant as medical advice. Definitely consult with your physician before taking any type of supplements.   The schematic below gives a ‘big-picture’ view of my treatment strategy.

18.01.01.Daily_Take. brain.druge.CAM.Exercise

To some, my treatment plan may seem relatively conservative. It has been developed through conversations with my Neurologist and Internist.  This was followed by studying the medical literature on what has worked in Parkinson’s treatment, the list of compounds to consider was defined/refined (actually, my choice of OTC compounds has been trimmed from several years ago).  My CAM drug/vitamin/natural products strategy for treating Parkinson’s goes as follows: a) compounds (reportedly) able to penetrate the blood brain barrier; b) compounds (possibly) able to slow progression of the disorder; c) compounds that either are anti-oxidative or are anti-inflammatory; d) compounds that don’t adversely alter existing dopamine synthesis/activity; e) compounds that support overall body well-being; and f) compounds that support specific brain/nervous system health/nutrition. [Please consult with your physician before taking any type of supplements.] The Table below presents a detailed overview of my strategy for treating Parkinson’s.

18.01.01.DailyTherapy4Note of caution: Most herbs and supplements have not been rigorously studied as safe and effective treatments for PD. The U.S. Food and Drug Administration (FDA) does not strictly regulate herbs and supplements; therefore, there is no guarantee of safety, strength or purity of supplements.

REPLACING DOPAMINE:
On a daily basis, I use a combination of Carbidopa/Levodopa (25 mg/100 mg tablet x 4 daily, every 5 h on an empty stomach if possible, typically 6AM, 11AM, 4PM, 9PM) and a dopamine agonist Requip XL [Ropinirole 6 mg total (3 x 2 mg tablets) x 3 daily, every 6 h, typically 6AM, noon, 6PM).  This treatment strategy and amount combining Carbidopa/Levodopa and Ropinirole has been in place for the past 18 months (NOTE: I stopped using the additional dopamine agonist Neupro transdermal patch Rotigotine). For an overview on Carbidopa/Levodopa, I highly recommend the following 2 papers:
[1.] Ahlskog JE. Cheaper, Simpler, and Better: Tips for Treating Seniors With Parkinson Disease. Mayo Clinic Proceedings. 2011;86(12):1211-6. doi: https://doi.org/10.4065/mcp.2011.0443.
[2.] 1. Espay AJ, Lang AE. Common Myths in the Use of Levodopa in Parkinson Disease: When Clinical Trials Misinform Clinical Practice. JAMA Neurol. 2017. doi: 10.1001/jamaneurol.2017.0348. PubMed PMID: 28459962.

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 slowing the progression of my Parkinson’s. Please see this blog post for a review of Isradipine (click here). [Please consult with your physician before taking any type of new medication.

ANTIOXIDANTS/VITAMINS/GENERAL HEALTH:
N-Acetyl-Cysteine (NAC; 600 mg x 3 daily) is a precursor to glutathione, a powerful anti-oxidant. In several studies, NAC has been shown to be neuroprotective in Parkinson’s (click here).  I have recently posted an overview of NAC (click here). Furthermore, the ‘Science of Parkinson’s disease’ has presented their usual outstanding quality in a blog post on NAC in PD (click here);
trans-Resveratrol (200 mg daily) is an antioxidant that crosses the blood-brain barrier, which could reduce both free-radical damage and inflammation in Parkinson’s. If you decide to purchase this compound, the biologically-active form is trans-Resveratrol. The ‘Science of Parkinson’s disease’ has an excellent blog post on Resveratrol in PD (click here);
Grape Seed (100 mg polyphenols, daily) is an antioxidant that crosses the blood-brain barrier, which could reduce both free-radical damage and inflammation in Parkinson’s;
Milk Thistle (Silybum Marianum, 300 mg daily) and its active substance Silymarin protects the liver.  Dr. Jay Lombard in his book, The Brain Wellness Plan, recommends people with PD who take anti-Parkinson’s drugs (metabolized through the liver) to add 300 mg of Silymarin (standardized milk thistle extract) to their daily medication regime.
Melatonin (3 mg 1 hr before sleep) Melatonin is a hormone that promotes sustained sleep. Melatonin is also thought to be neuroprotective (click here);
Probiotic Complex with Acidophilus is a source of ‘friendly’ bacteria to contribute to a healthy GI tract.
Vitamin (daily multiple)
A high-potency multivitamin with minerals to meet requirements of essential nutrients, see label for content [I only take 1 serving instead  of the suggested 2 gummies due to my concern about taking a large amount of Vitamin B6 as described in a recent blog (click here)]:
IMG_2059 copyVitamin D3 (5000 IU 3 times/week) is important for building strong bones. Now we also know that vitamin D3 is almost like ‘brain candy’ because it stimulates hundreds of brain genes, some of which are anti-inflammatory and some support nerve health (click here). Supplementation with vitamin D3 (1200 IU/day) for a year slowed the progression of a certain type of Parkinson’s (click here). Furthermore, augmentation with vitamin D3 was recently shown to slow cognitive issues in Parkinson’s (click here).

NO LONGER TAKE Coenzyme Q10 (CoQ10), Creatine and Vitamin E because they did not delay the progression of Parkinson’s or they were harmful.
NO LONGER TAKE a high potency Vitamin B Complex (see label below) due to my concern that a large excess vitamin B6 could be detrimental to Carbidopa/Levodopa (click here for blog post):
Screen Shot 2018-01-02 at 11.39.56 PM
List of several recent PubMed peer-reviewed CAM reviews (includes a more comprehensive overview of all areas of CAM in treating Parkinson’s):
Bega D, Zadikoff C. Complementary & alternative management of Parkinson’s disease: an evidence-based review of eastern influenced practices. J Mov Disord. 2014;7(2):57-66. doi: 10.14802/jmd.14009. PubMed PMID: 25360229; PMCID: PMC4213533.

Bega D, Gonzalez-Latapi P, Zadikoff C, Simuni T. A Review of the Clinical Evidence for Complementary and Alternative Therapies in Parkinson’s Disease. Current Treatment Options in Neurology. 2014;16(10):314. doi: 10.1007/s11940-014-0314-5.

Ghaffari BD, Kluger B. Mechanisms for alternative treatments in Parkinson’s disease: acupuncture, tai chi, and other treatments. Curr Neurol Neurosci Rep. 2014;14(6):451. doi: 10.1007/s11910-014-0451-y. PubMed PMID: 24760476.

Kim HJ, Jeon B, Chung SJ. Professional ethics in complementary and alternative medicines in management of Parkinson’s disease. J Parkinsons Dis. 2016;6(4):675-83. doi: 10.3233/JPD-160890. PubMed PMID: 27589539; PMCID: PMC5088405.

Kim TH, Cho KH, Jung WS, Lee MS. Herbal medicines for Parkinson’s disease: a systematic review of randomized controlled trials. PLoS One. 2012;7(5):e35695. doi: 10.1371/journal.pone.0035695. PubMed PMID: 22615738; PMCID: PMC3352906.

Wang Y, Xie CL, Wang WW, Lu L, Fu DL, Wang XT, Zheng GQ. Epidemiology of complementary and alternative medicine use in patients with Parkinson’s disease. J Clin Neurosci. 2013;20(8):1062-7. doi: 10.1016/j.jocn.2012.10.022. PubMed PMID: 23815871. 

Today we take control over our Parkinson’s:
Please stay focused on dealing with your disorder.
Please learn as much as you can about Parkinson’s.
Please work with your neurologist to devise your own treatment strategy.
Please stretch and exercise on a daily basis, it will make a difference.
Please be involved in your own disorder; it matters that you are proactive for you.
Please stay positive and focused as you deal with this slowly evolving disease.
Please stay hopeful you can mount a challenge to slow the progression.
Please remain persistent; every morning your battle renews and you must be prepared.

 

In the midst of winter, I found there was, within me, an invincible summer.  And that makes me happy. For it says that no matter how hard the world pushes against me, within me, there’s something stronger – something better, pushing right back.” Albert Camus

Cover photo credit: news.nowmedia.co.za/medialibrary/Article/109153/Wine-grape-crop-6-7-down-in-2016-800×400.jpg

 

Part 1 of 2017 PWR! (Parkinson Wellness Recovery) Retreat: Pictures With Great Memories

“Just put one foot in front of the other.”  Austin Peck

“Coming together is a beginning; keeping together is progress; working together is success.”  Henry Ford

Introduction to Part 1: From May 28-June 3, >100 people came to Scottsdale, Arizona for the PWR! Retreat. The final tally had >50 people-with-Parkinson’s, more than 30 care partners and ~20 physical therapists/fitness professionals, and PWR! Gym staff.

Simply stated,  participating in my first PWR! Retreat was life-altering, life-changing and possibly even life-saving. It will be hard to put into words what the week meant to me and  what it did for me.

I have decided to write 2 posts describing the PWR! Retreat,  Part 1 contains: (i) overview of week; (ii) instructors; (iii) impressions of format, instructors, teams, and location; and (iv) video presentation describing the entire week.

“Alone we can do so little; together we can do so much.”  Helen Keller

Video presentation describing the entire week:   I want to begin with the finale and show a video compiled to highlight the week of the PWR! Retreat. The vast majority of pictures shown in the video were either taken by or obtained from Claire McLean. A few things I want to highlight about the PWR! Retreat that you will see in the video include the following: a) it was a tremendous amount of fun; b) it was a lot of work physically because we exercised several hours every day; c) there was total camaraderie and synergy throughout the week; d)  every afternoon was spent being educated about Parkinson’s; e)  the physical therapists/fitness professionals that led our sessions were all outstanding people and really knew how to work well with everyone with Parkinson’s, and f)  the week revolved around the exercise program and philosophy created by Dr. Becky Farley  (Founder and CEO of Parkinson Wellness Recovery), and in reality, she was the reason we were all at the PWR! Retreat.

Assembling the pictures and putting it all together into the video format left me somewhat speechless. The video brought back so many wonderful memories of the interactions with everybody and it reminded me of the intensity of the exercise.  Watching the video allowed me to recall the sheer quality and quantity of the education  program presented, and it let me reminiscence about the sincerity and friendliness of everyone present.   It just felt like everyone wanted to be at the PWR! Retreat every single second of that week.

Video of 2017 PWR! Retreat: Pictures With Great Memories (to access the YouTube site, please click here).

“We keep moving forward, opening new doors, and doing new things, because we’re curious and curiosity keeps leading us down new paths.” Walt Disney

PWR! Retreat agenda and overview of the week (Click here to view Program ): There were basically two-sessions per day.  The morning always began for everyone with a PWR-Walk with poles at 6:30 AM, then breakfast and then separate programs for those of us with Parkinson’s (exercise) and Care Partners (a mixture of education sessions, group discussions and/or exercise), and sometimes we were combined together (which was always fun). Lunch was next.  The afternoon session was usually all-inclusive of participants and we listened to experts discuss many aspects of Parkinson’s, we had group discussions, and we had sessions of yoga, meditation, Tai Chi and other modalities (e.g., deep-brain stimulation surgery or DBS) used to treat Parkinson’s. The day usually ended at 5:30 PM and dinner was on our own.  Many came back after dinner to the game room, we had a dance night, I played golf on 4 different evenings, many of us returned to the resort bar/club to socialize and many people checked in early because an 11-hour day was incredibly fun but also it was tiring. All-in-all, the agenda was completell, well-rounded, and most enjoyable.  We were never bored.

“I find that the best way to do things is to constantly move forward and to never doubt anything and keep moving forward, if you make a mistake say you made a mistake.”  John Frusciante

PWR! Retreat instructors (brief biographies of the people who led our instructions; presented in alphabetical order after Dr. Farley):  To me, exercise  was the most important aspect of the retreat, followed by meeting everyone with Parkinson’s, and then equally important, the educational program.   Therefore, I want to present the physical therapists/fitness professionals, volunteers and staff that provided us our workout each day.  Each person was uniquely qualified; in my opinion, together as a team they have no equal. Here are a few comments about each one of the instructors.

•Dr. Becky Farley has a PhD in neuroscience from the University of Arizona, a Masters of science physical therapy from the University of North Carolina at Chapel Hill, and a bachelor of physical therapy from the University of Oklahoma.  During her post-doctorate, she developed the LSVT Big therapy program. Following this, she created the exercise program of PWR!Moves, opened the PWR! Gym that follows a philosophy centered on exercise is medicine and framework call PWR!4Life; in all this is contained within the nonprofit organization called Parkinson Wellness Recovery (PWR!).  The PWR! Retreat begins and ends with Dr. Farley; she’s clearly the heartbeat of why we were in Arizona.

•Dr. Jennifer Bazan-Wigle has her doctorate of physical therapy from Nova Southeastern University. She is an expert in treating individuals with Parkinson’s and various movement disorders and works at the PWR!Gym in Tucson, Arizona.  My history with Jennifer starts in 2016 when she was my instructor for PWR!Moves certification;  she was a motivated teacher, very knowledgeable about Parkinson’s and had intensity and the drive to really focus us to learn the material.  Jennifer is a role model for a physical therapist, and she is an amazing educator for working with those of us with Parkinson’s.

Jan Beyer completed her Masters in health education from Cortland state New York and started her own personal training business called “FitJan”.   She now lives and works in the Vancouver, Washington area where she’s working for the Quarry Senior living as the fitness director/Parkinson’s director.

Dr. Emily Borchers has her doctorate in physical therapy from Ohio State University and she currently works at the PWR!Gym.  Emily was very effective at sharing her expertise in helping teach all of the individuals with Parkinson’s.

Heleen Burghout has a Masters degree in physiotherapy from University of Amsterdam,  the Netherlands; and she has a primary care practice called ‘FhysioAlign’ in Ede,  the Netherlands. One of the main focuses of her practice is dealing with exercise and improving physical and mental conditions of people with Parkinson’s.

Dr. Valerie A. Carter has a doctorate in physical therapy from Northern Arizona University in Flagstaff Arizona and is an associate clinical professor of physical therapy at Northern Arizona University.  She is certified and has taught workshops in both PWR! Moves and LSVT Big.  She owns and operates “Carter rehabilitation and wellness center and outpatient physical therapy clinic” in Flagstaff and she is an expert dealing with Parkinson’s patients.

Dr. Carl DeLuca has a doctorate in physical therapy from the University of Wisconsin-Madison.  He works in Wisconsin Rapids Wisconsin and is focused on a patient population with outpatient orthopedic and neurological including people with Parkinson’s.  He is working to set up a central Wisconsin PT program for Parkinson’s.

Dr. Chelsea Duncan has a doctorate in physical therapy from University Southern California and works as an outpatient neurologic clinic that specializes in movement disorders. She focuses in teaching both one-on-one and group exercise classes  for people with Parkinson’s. And she does live in sunny Los Angeles California.

Marge Kinder has a degree in physical therapy from University of California, San Francisco and for more than 40 years has been practicing and treating neurological disorders.  She is the project coordinator for the Redmond Regional Medical Center in Rome Georgia.

Dr. Claire McLean  has a doctorate in physical therapy  from the University of Southern California and is an adjunct faculty member at both University of Southern California and California State University, Long Beach.  She has extensive training and is a board-certified neurologic clinical specialist and teaches both PWR! therapist and instructor courses. She has started a community wellness program for people with Parkinson’s and this is located in Southern California. My experience with Claire is that she was the voice and instructor for the videos that I use in my own training and for my undergraduate class in highlighting PWR! Moves.  Claire is an incredible PT/educator of exercise-and-life-programs for those of us with Parkinson’s.

Nancy Nelson is an ACE certified personal trainer and fitness specialist with over three decades of work experience in the health and wellness industry. She is an expert in dealing with exercise and Parkinson’s.

Sarah Krumme Palmer  has an MS degree in exercise physiology and have been working with patients with Parkinson’s for over 20 years. She is the owner of ‘forever fitness’ in Cincinnati Ohio. She is certified in PWR! moves professional, and has the Rock Steady Boxing affiliate in Cincinnati and has a Certified Strength and Conditioning Specialist (CSCS) certification through the National Strength and Conditioning Association (NSCA).

Kimberly Peute has an MBA from Webster University and is currently a JD candidate University of Arizona School of Law. She was an active participant in the PWR! retreat and was in charge of the care partner program.

•Lisa Robert has a physical therapy degree from the University of Alberta and Edmonton Alberta Canada and has been working in various settings including acute care, private practice and outpatient setting treating neurological patients.   Lisa has NDT, LSVT Big and PWR! Moves professional training experience, and she is a Master Trainer for urban poling. Lisa is also an excellent golfer; I had the opportunity and pleasure to play golf with her twice during the week of the PWR! Retreat.

•Ben Rossi has nearly 20 years of experience in fitness coaching, eight years dealing with the peak Parkinson’s community and as the founder of InMotion, he owns and operates ATP evolution performance training center.  Ben’s goal is straightforward in that he wants you in motion, helps you achieve a better eating program, encourages a positive attitude and he wants you to become 1% better every day.  He lives in Warrensville Heights Ohio.

Melinda Theobald has her MS degree in human movement from the A.T. Still University, Arizona School of Health Sciences, where she is certified by the National Academy sports medicine as corrective exercise specialist and a performance enhancement  specialist.  She currently works for Banner Neuro Wellness West in Sun City Arizona.

•Christy Tolman  has been a licensed realtor for over a decade and  served on the Parkinson’s network of Arizona at the Mohammad Ali Parkinson Center in Phoenix.  She was everything to the PWR! Retreat in terms of organizational skills;  in other words,  the PWR! Retreat was successful because of Christy’s effort.

“If everyone is moving forward together, then success takes care of itself.”  Henry Ford

Impressions of format, instructors, teams, and location: 
Location– Scottsdale Resort in McCormick Ranch in Scottsdale Arizona was the ideal setting for the PWR! Retreat. The resort itself was well-kept and the rooms we used for the retreat were just right; the staff were helpful; it was adjacent to a golf course (great for me); many restaurants/shopping were only minutes away; and the food was just never-ending and really good quality.   I realize you can’t control the weather, but it was ideal sunny, hot and dry with clear skies.
Format–  the format was described above and it seemed ideal for the participants dealing with exercise in the morning and education in the afternoon with evenings free either to do things with your partner or with the group-at-large.
Instructors– They totally rocked!  I cannot imagine a better group of people to teach PWR! Moves and the other exercise (PWR-pole-walking, Circuit and Nexus) routines associated with the PWR! Retreat.  It was also so nice to see them outside of exercise; some gave talks in the afternoon sessions, we had meals together with them , and they were also active participants in all of our other events. 
Teams–   we had four different teams, my team was the Blue team  (For pole walking it was both the people with Parkinson’s and the care partners together, and for the exercise it was typically just the people with Parkinson’s together) and my group did the following sessions together as illustrated by the blue boxes in the table below.   I will describe the experience in more detail in my next post.  However, this was the vital experience that made the PWR! Retreat so valuable, spending time with these people the majority of whom had Parkinson’s (it was a special treat and honor to have the care partners with us for so much time as well because they were remarkable people themselves).

17.07.22.Group_Assignments

“Don’t dwell on what went wrong. / Instead, focus on what to do next. / Spend your energies on moving forward / toward finding the answer.” Denis Waitley

Pictures With Great Memories:  Below are posted many of the pictures that were contained in the video I showed in the beginning of the post. My second post I will spend more time talking about the exercise routines, education program, team camaraderie, and my personal feelings behind the week of exercise and everything else associated with the PWR! Retreat.   It’s very safe to say as I remarked at the beginning, the impact of  the PWR! Retreat on me was life altering and very meaningful in a profound manner.

My Team/Program Leaders (names of those missing from pictures are given in the video):

 The Team Leaders and Teams:

Exercise Routines (Pole walking, PWR! Moves, Nexus and Circuit):

 

Dance night, game night and meditation:

 

My Keynote presentation and additional ‘stuff’:

 

 

Additional photos of the PWR! Retreat instructors/organizers:
Screen Shot 2017-07-14 at 9.39.41 AMIMG_5228 (1)Golf fun:

 

Giving thanks and saying good-bye to all of the instructors:

 

 

“I do believe my life has no limits! I want you to feel the same way about your life, no matter what your challenges may be. As we begin our journey together, please take a moment to think about any limitations you’ve placed on your life or that you’ve allowed others to place on it. Now think about what it would be like to be free of those limitations. What would your life be if anything were possible?” Nick Vujicic

Cover photo credit:

http://www.genehanson.com/images/photography/777sunset/020_arizona_sunetset_image0001.jpg

 

 

Save

Parkinson’s Disease Research: A Commentary from the Stands and the Playing Field

“You can have a very bad end with Parkinson’s, but on the other hand, you can be like me, because I’m lucky. I’m not having a bad end.” Margo MacDonald

“My age makes me think how valuable life is. How bad is something like Parkinson’s in relation to not having life at all?” Michael J. Fox

Introduction: Last month, together with Dr. Simon Stott and his team of scientists (The Science of Parkinson’s Disease), we co-published a historical timeline of Parkinson’s disease beginning with the description of the ‘shaking palsy’ from James Parkinson in 1817. My post entitled “Milestones in Parkinson’s Disease Research and Discovery” can be read here (click this link). The Science of Parkinson’s Disease post entitled “Milestones in Parkinson’s Disease Research and Discovery” can be read here (click this link).

We spent a lot of time compiling and describing what we felt were some of the most substantial findings during the past 200 years regarding Parkinson’s disease.  I learned a lot; truly amazing what has been accomplished in our understanding of  such a complex and unique disorder.  Simon posted a follow-up note entitled “Editorial: Putting 200 years into context” (click this link). I have decided to also post a commentary from the standpoint of (i) being someone with Parkinson’s and (ii) being a research scientist.

“Every strike brings me closer to the next home run.” Babe Ruth

Baseball: I want to use the analogy of a baseball game to help organize my commentary. Baseball fans sit in the stands and have fun watching the game, thinking about the strategy behind the game, eating/drinking, and sharing the experience with family/friends/colleagues.   Most baseball players begin playing early in life and the ultimate achievement would be to reach the major leagues. And this would usually have taken many years of advancing through different levels of experience on the part of the ballplayer. How does how this analogy work for me in this blog? Stands: I am a person-with-Parkinson’s watching the progress to treat and/or cure this disorder. Playing field: I am a research scientist in a medical school (click here to view my training/credentials).

“Never allow the fear of striking out keep you from playing the game!”  Babe Ruth

Observation from the stands:
I am a spectator like everyone else with Parkinson’s. I read much of the literature available online.  Like you, I think about my disorder; I think about how it’s affecting me every day of my life. Yes, I want a cure for this disease.  Yes, I’m rather impatient too.  I understand the angst and anxiety out there with many of the people with Parkinson’s. In reality, I would not be writing this blog if I didn’t have Parkinson’s. Therefore, I truly sense your frustration that you feel in the presence of Parkinson’s, I do understand.  Given below are examples of various organizations and ads and billboards in support of finding a cure for Parkinson’s.  Some even suggest that a cure must come soon.   However, the rest of my post is going to be dedicated to trying to explain why it’s taking so long; why I am optimistic and positive a cure and better treatment options are going to happen.  And it is partly based on the fact that there really are some amazing people working to cure Parkinson’s and to advance our understanding of this disorder.

“When you come to a fork in the road take it.” Yogi Berra

Observations from the playing field (NIH, war on cancer, research lab, and advancing to a cure for Parkinson’s):

National Institutes of Health (NIH) and biomedical research in the USA: Part of what you have to understand, in the United States at least, is that a large portion of biomedical research is funded by the NIH (and other federally-dependent organizations), which receives a budget from Congress (and the taxpayers). What does it mean for someone with Parkinson’s compared to someone with cancer or diabetes? The amount of federal funds committed to the many diseases studied by NIH-funded-researchers are partly divvied up by the number of people affected. I have prepared a table from the NIH giving the amount of money over the past few years for the top four neurodegenerative disorders, Alzheimer’s, Parkinson’s, amyotrophic lateral sclerosis (ALS), and Huntington’s Disease, respectively [taken from “Estimates of Funding for Various Research, Condition, and Disease Categories” (click here)]. And this is compared to cancer and coronary arterial disease and a few other major diseases. Without going into the private organizations that fund research, a large amount of money comes from the NIH. Unfortunately, from 2003-2015, the NIH lost >20% of its budget for funding research (due to budget cuts, sequestration, and inflationary losses; click here to read further).   Therefore,  it is not an overstatement to say getting  funded today by the NIH is fiercely competitive.  From 1986 to 2015, my lab group was supported by several NIH grants and fellowships  (and we also received funding from the American Heart Association and Komen for the Cure).

17.05.04.NIH.Funding

“In theory, there is no difference between theory and practice. But in practice, there is.” Yogi Berra

War against cancer: In 1971, Pres. Richard Nixon declared war against cancer and Congress passed the National Cancer Act.  This created a new national mandate “to support research and application of the results of research to reduce the incident, morbidity, and mortality from cancer.” Today, cancer is still the second leading cause of death in the USA; however, we’ve come such a long way to improving this statistic from when the Cancer Act was initiated.

Scientifically, in the 1970’s, we were just learning about oncogenes and the whole field of molecular biology was really in its infancy. We had not even started sequencing the human genome, or even of any organism.  We discovered genes that could either promote or suppress cellular growth.   We began to delineate the whole system of cell signaling and communications with both normal and malignant cells. We now know there are certain risk factors that allow us to identify people that may have increased risk for certain cancers. Importantly,  we came to realize that not all cancers were alike,  and it offered the notion to design treatment strategies for each individual cancer.  For example,  we now have very high cure rates for childhood acute leukemia and Hodgkin’s lymphoma and we have significantly improved survival statistics for women with breast cancer. Many might say this was a boondoggle and that we wasted billions of dollars  funding basic biomedical research on cancer; however, basic  biomedical research is expensive and translating that into clinical applications is even more expensive.  [ For a  very nice short review on cancer research please see the following article, it may be freely accessible by now: DeVita Jr, Vincent T., and Steven A. Rosenberg. “Two hundred years of cancer research.” New England Journal of Medicine 366.23 (2012): 2207-2214.]

“One of the beautiful things about baseball is that every once in a while you come into a situation where you want to, and where you have to, reach down and prove something.” Nolan Ryan

The biomedical research laboratory environment:  A typical laboratory group setting is depicted in the drawing below. The research lab usually consists of the lead scientist who has the idea to study a research topic, getting grants funded and in recruiting a lab group to fulfill the goals of the project.  Depending on the philosophy of the project leader the lab may resemble very much like the schematic below or may be altered to have primarily technicians or senior postdoctoral fellows working in the lab  (as two alternative formats). A big part of academic research laboratories is education and training the students and postdocs to go on to advance their own careers; then you replace the people that have left and you continue your own research.  Since forming my own lab group in 1986, I have helped train over 100 scientists in the research laboratory: 17 graduate students, 12 postdoctoral fellows, 17 medical students, and 64 undergraduates. The lab has been as large as 10 people and a small as it is currently is now with two people. People come to your lab group because they like what you’re doing scientifically and this is where they want to belong for their own further training and advancement.  This description is for an academic research  laboratory; and  I should also emphasize that many people get trained in federal government-supported organizations, private Pharma and other types of research environments that may differ in their laboratory structure and organizational format.

15.05.11.Lab_Organization

“Hitting is 50% above the shoulders.” Ted Williams

 In search of the cure for Parkinson’s:    First, I understand the situation you’re in with Parkinson’s because I’m living through the same situation.   But when people find out I’m a research scientist they always wonder why aren’t we doing more to find a cure, and I  hear the sighs of frustration and I see the anxiety in their faces. Second, the previous three sections are not meant to be an excuse for why there is still no cure for Parkinson’s. It is presented in the reality of what biomedical research scientists must undergo to study a topic.  Third, the experiments that take place in basic biomedical research laboratory may happen over weeks to months if successful. Taking that laboratory data to the clinic and further takes months and years to succeed if at all.   The section on cancer reminds me a lot of where we are going with Parkinson’s and trying to advance new paradigms in the treatment and curative strategies.  Professionally, I have even decided  to pursue research funding in the area of Parkinson’s disease.   Why not spend the rest of my academic career studying my own disease; in the least I can help educate others about this disorder. Furthermore, I can assure you from my reading and meeting people over the last couple of years, there are many hundreds of scientists and clinicians throughout this world studying Parkinson’s and trying to advance our understanding and derive a cure.  I see their devotion, I see their commitment to helping cure our disorder.

The science behind Parkinson’s is quite complicated. These complications suggest that Parkinson’s may be more of a syndrome rather than a disease. Instead of a one-size-fits-all like a disease would be classified; Parkinson’s as a syndrome would be a group of symptoms which consistently occur together.  What this might imply is that some treatment strategy might work remarkably well on some patients but have no effect on others. However, without a detailed understanding and advancement of what Parkinson’s really is we will never reach the stage where we can cure this disorder.

bright-future-ahead-1024x772
In a recent blog from the Science of Parkinson’s disease, Simon nicely summarized all the current research in 2017 in Parkinson’s disease (click here to read this post). To briefly summarize what he said is that there are multiple big Pharma collaborations occurring to study Parkinson’s.  There are more than 20 clinical trials currently being done in various stages of completion to prevent disease progression but also to try to cure the disorder.  From a search of the literature, there are literally hundreds of research projects going on that promise to advance our understanding of this disorder. With the last point, it still will take time to happen. Finally, I am a realist but I’m also optimistic and positive that we’re making incredible movement toward much better therapies, which will eventually lead to curative options for Parkinson’s.

And a final analogy to baseball and Parkinson’s, as Tommy Lasorda said “There are three types of baseball players: those who make it happen, those who watch it happen, and those who wonder what happens.”  I really want to be one of those scientists that help make it happen (or at least to help advance our understanding of the disorder).

“You can’t expect life to play fair with your heart or your brain or your health. That’s not the nature of the game we call life. You have to recognize the nature of the game and know that you can do your best to make the right choices, but life if going to do whatever the hell it pleases to you anyway. All you can control is how you react to whatever life throws at you. You can shut down or you can soar.” Holly Nicole Hoxter

Cover photo credit: PNC Park photo: i.imgur.com/32RWncK

Sign post scienceofparkinsons.com/

Driving Under the Influence of Parkinson’s

“Have you ever noticed that anybody driving slower than you is an idiot, and anyone going faster than you is a maniac?” George Carlin

“If all the cars in the United States were placed end to end, it would probably be Labor Day Weekend.” Doug Larson

The Dilemma: At some age in our life, maybe, just maybe, we could lose the privilege of driving our car/truck.  If you are living with Parkinson’s, depending on the individual, losing the legal right to drive your motor vehicle might/could happen at an even earlier age.  A discussion of driving under the influence of Parkinson’s is presented here.

“I love driving cars, looking at them, cleaning and washing and shining them. I clean ’em inside and outside. I’m very touchy about cars. I don’t want anybody leaning on them or closing the door too hard, know what I mean?” Scott Baio

The Michon model of normal driving behavior:  In 1985, Michon proposed that drivers need to conduct problem-solving while driving; he divided it  into three levels of skill and control. The model includes strategic (planning), tactical (maneuvering), and operational (control) levels.   When you think about it driving really is a complicated task.   The strategic level is basically the general route and planning needed to successfully navigate the motor vehicle.  The tactical and control levels involve the individual driving circumstances and how one responds and our responsiveness to the action of driving.   And of course, it’s quite obvious, that unsafe driving is operating a motor vehicle in an unsafe manner regardless of your health status. Driving safely is important for the individual as well as for the people around you; thus, it is a serious task to evaluate someone’s competency to drive a motor vehicle. Shown below is a schematic drawing of the Michon model of normal driving behavior.

17.04.07.Driving.Model

“The one thing that unites all human beings, regardless of age, gender, religion, economic status, or ethnic background, is that, deep down inside, we all believe that we are above-average drivers.” Dave Barry

Decision-making while driving:   Below are some traffic signs that we might encounter in our usual driving pattern depending on where we live. When you think about decision-making you’re in your lane you’re driving down the road and you see signs like this, then what?  You can see how it takes all three levels of driving competency to navigate successfully while driving a motor vehicle in a complex maneuver.  Now add the complications of someone with Parkinson’s, you may need to re-think the entire situation. What this says is that when you’re driving a motor vehicle you’re trying to integrate many levels of sensory, motor and cortical function to the process. In Parkinson’s, we may have some sort of motor skill/task impairment, potentially mixed with a minor cognitive disorder, and further clouded by traditional drug therapy. Who makes the decision for the patient with Parkinson’s about being able to continue to drive?  Not an easy answer.

“Some beautiful paths can’t be discovered without getting lost.” Erol Ozan

 Possible problems that could occur while driving with Parkinson’s: The control or operational level of driving a car can be influenced by motor defects experienced by many with Parkinson’s, including rigidity, tremor, bradykinesia and dyskinesia. Futhermore, non-motor deficits could impair both route planning, strategic and tactical levels, and these would include cognitive decline, neuropsychiatric symptoms and/or visual impairment. And on top of that in the elderly population, many people with Parkinson’s have additional co-morbidity that could also contribute to diminish our ability to drive a motor vehicle. Thinking about just one aspect, slowness in cognitive function, the inability to make a decision quickly could lead to poor performance time and might affect driving in someone with Parkinson’s. Alternatively, you may have none of these problems and will be driving for many more years. But as we all start to exhibit signs and symptoms of motor and non-motor deficits, this will eventually become an important issue for each of us to deal with at some point in time.

“Always focus on the front windshield and not the review mirror.” Colin Powell

 What are some criteria for determining our fitness to drive a motor vehicle when you have Parkinson’s? In a very nice review, Jitkritsadakul and Bhidayasiri suggest there are five different red flags that should tell our neurologist that we may have an impairment that should limit our driving of motor vehicles. First, these include our clinical history, which would be a history of accidents, sleeping attacks while driving and combined with the daily dose amount of levodopa. Next would be a questionnaire to determine our level of daily sleepiness. Third, a motor assessment skills test. Fourth, a cognitive assessment. And fifth would be a visual assessment.  Look above at the Michon driving schematic and think about the three levels of skill required for driving and substitute someone with Parkinson’s and how that could diminish one or more of the skill sets over time.  What this says to me is that through a combination of family and friends and carepartner,  along with the advice of our neurologist, one should be able to make a critical assessment of whether or not we should continue to drive.

“Driving your car through deep pools of flood water is a great way of making your car unreliable. Smart people turn around and avoid it.” Steven Magee

A love of motor vehicles (a personal expression):  I grew up loving automobiles; and living on Air Force Bases, I saw many different types of sports cars  (e.g., Corvette, Jaguar, Triumph, Porsche, Shelby Mustang, Ferrari- you just had to believe that Air Force pilots live for speed in the air and their cars showed it on the ground). I can remember in 1964 (I was 11 years old) going to the Ford dealership with my dad to see the very first Ford Mustang cars; thinking how beautiful they were and remembering my dad’s comment that was a lot of car for $2,400.   I still have vivid memories of riding with my dad (yes, he was a former pilot) in his ~1962 white Porsche. I can still remember in 1971 getting my first car, a 1968 Chevrolet Camaro (red interior and red exterior) with standard transmission (three on the floor) and powered by a 327 cubic inch V-8 engine. [Please note, the pictures below are representative images because I could not find any actual old photos of these cars]

IMG_3832

Over the decades, I can recall the weekly car-washing sessions, typically on Saturday mornings. With the exception of one car in the early 1980’s, I have loved and truly enjoyed the automobiles I’ve driven.  Like many people I’ve named all my cars; my two current automobiles are named Raven and Portia. I still enjoy driving a standard shift car using the clutch that requires both cognitive function and motor skills to navigate the automobile. I have always thought “It’s going to be a cold day in hell before they take my car away”; however, it’s a reality in the future I now face with Parkinson’s. In fact one of the very first people I ever told about my Parkinson’s several years ago, the very first question she asked me was “Are you still able to drive?”  In summary, driving under the influence of Parkinson’s is something we all will need to consider with time; I wish you well with your driving experiences.

“Driving a car provides a person with a rush of dopamine in the brain, which hormonal induced salience spurs modalities of creative and critical thinking regarding philosophical concepts such as truth, logical necessity, possibility, impossibility, chance, and contingency.” Kilroy J. Oldster

https://www.ncbi.nlm.nih.gov/pubmed/27729986

1.    Jitkritsadakul O, Bhidayasiri R. Physicians’ role in the determination of fitness to drive in patients with Parkinson’s disease: systematic review of the assessment tools and a call for national guidelines. Journal of Clinical Movement Disorders. 2016;3(1):14. doi: 10.1186/s40734-016-0043-x.

Cover photo credit: s-media-cache-ak0.pinimg.com/564x/22/d1/75/22d175ac53a0a5dbb04e77ae52a49c52.jpg

Save

Save

Parkinson’s Awareness Month: Greetings from North Carolina, USA

With Parkinson’s you have two choices: You can let it control you, or you can control it. And I’ve chosen to control it.” US Senator Isakson

“Perhaps I am stronger than I think.” Thomas Merton

Précis: A brief overview about Parkinson’s disease, highlights from our Moving Day NC Triangle Planning Committee during “Parkinson’s Disease Awareness Month”, and some interesting points about the State of North Carolina.

Parkinson’s disease overview:

“The strongest people are not those who show strength in front of us but those who win battles we know nothing about.” Anonymous

Parkinson’s disease awareness month: Parkinson’s awareness month is exactly that.  You simply start by making people around you familiar with this disorder.  And you can help others learn more about this neurodegenerative disease. Blake Tedder, our Parkinson’s Foundation Community Development Manager, has been busy.  He has been requesting/receiving proclamations recognizing and acknowledging the impact of Parkinson’s.  We will be thanking Blake for the rest of the year in his tireless effort on Parkinson’s disease; from all of us on the Moving Day planning committee, thank you Blake!

“We aren’t victims, we are strong, amazing people who just happen to have a crummy disease, and we want a cure to that disease”  Kate Matheson

Partial list of events where we have received proclamations (click here for the complete list- 2017PAM_Proclamations_final):

  • Town of Carrboro – Tuesday March 28th 7:30pm – Carrboro Town Hall, Carrboro
    Attending: Blake Tedder, National Parkinson Foundation
    Frank Church, PhD, UNC School of Medicine, Moving Day Planning committee, PWP;
  • Wake County – Monday April 3rd– 5:00pm – Wake Justice Building, Raleigh
    Attending: David E. Malarkey, DVM/PhD, Councilor, People with Parkinson’s Advisory Council, Parkinson’s Foundation;
  • Durham – Monday April 3rd– 7:00pm – Wake Justice Building, Raleigh
    Attending: Blake Tedder, MSW, National Parkinson Foundation
    Jeaninne Wagner, Moving Day Planning committee, PWP;
  • Orange County – Tuesday April 4th– 7:00pm – Whitted Building, Hillsborough
    Attending: Blake Tedder, MSW, National Parkinson Foundation
    Susan Gerbeth-Jones, MS, Orange County Resident, PWP;
  • Durham County – Tuesday April 11th– 7:00pm – Durham County Building/Main St, Durham|
    Attending: Blake Tedder, MSW, National Parkinson Foundation;
  • Town of Chapel Hill – Monday April 17th7:00pm – Chapel Hill Town Hall, Chapel Hill
    Attending: Blake Tedder, MSW, National Parkinson Foundation
    Frank Church, PhD, UNC School of Medicine, Moving Day Planning committee, PWP
    Jessica Shurer, MSW, Social Worker/Coordinator UNC Department of Neurology Movement Disorders Clinic;
  • Received via Mail or outside of a Formal Meeting:
    State of North Carolina – Governor Roy Cooper
    North Carolina Senate – Sen. Floyd McKissick
    Town of Cary –  Mayor Weinbrecht
    Town of Hillsborough – Mayor Tom Stevens
    City of Raleigh – Mayor Nancy MacFarlane

unnamed.PDAM.2017.

nc.jpg

“Chris[topher] Reeve wisely parsed the difference between optimism and hope. Unlike optimism, he said, ‘Hope is the product of knowledge and the projection of where the knowledge can take us.” Michael J. Fox

10-interesting points about North Carolina (click here for the complete list):

  • The University of North Carolina Chapel Hill is the oldest State University in the United States.
  • In 1903 the Wright Brothers made the first successful powered flight by man at Kill Devil Hill near Kitty Hawk. The Wright Memorial at Kitty Hawks now commemorates their achievement.
  • Mount Mitchell in the Blue Ridge Mountains is the highest peak east of the Mississippi. It towers 6,684 feet above sea level.
  • The first English colony in America was located on Roanoke Island. Walter Raleigh founded it. The colony mysteriously vanished with no trace except for the word “Croatoan” scrawled on a nearby tree.
  • High Point is known as the Furniture Capital of the World.
  • Babe Ruth hit his first home run in Fayetteville on March 7, 1914.
  • The Biltmore Estate in Ashville is America’s largest home, and includes a 255-room chateau, an award-winning winery and extensive gardens.
  • Pepsi was invented and first served in New Bern in 1898.
  • North Carolina leads the nation in furniture, tobacco, brick, and textile production.
  • Arnold Palmer recognized as the player whose aggressive play and winning personality raised golf to national attention, honed his skills on the championship golf team of Wake Forest University.

The State motto of North Carolina is “Esse quam videri” (To be rather than to seem),  which says be who you really are instead of who/how you want people to think you are.  Here is an editorial about our State motto (click here to read it).

A few closing personal comments about North Carolina: I was 24 years old in 1978 when I moved to Raleigh, North Carolina to begin working on my PhD.  Thirty-nine years later, I still call North Carolina home.  For 35 years I’ve been in Chapel Hill and working at UNC-Chapel Hill.  This is a beautiful state, with mountains on the western edge and the ocean on the eastern side.  We are quite blessed geographically.  We seem to be a ‘melting-pot’ for many from the northeast, midwest and western states to move here for career or to retire.  I really think we have nice 4-season weather (usually). The pictures below highlight just a few areas: beaches, mountains, beautiful downtown skyline of Charlotte, and the town of Chapel Hill (which changes dramatically when UNC-CH wins a national basketball championship).  I’ve been branded the ‘northerner of my family’ (my roots are in Louisiana and Alabama), but I’ve grown to really enjoy calling North Carolina home.  

north_carolina_simple

404dcd87a0a3584e1d882ac6083baa3b

View-of-Smoky-Mountains-from-Oconaluftee

1411431676-clt-1

“Always remember, your life matters now with Parkinson’s as much as it did before Parkinson’s. Stay hopeful as you navigate adversity, stay you in spite of your Parkinson’s.” Frank C. Church

Cover photo credit: wallpapersdsc.net/wp-content/uploads/2016/09/Red-Tulips-Pictures.jpg

Composite: s-media-cache-ak0.pinimg.com/originals/40/4d/cd/404dcd87a0a3584e1d882ac6083baa3b.jpg

gsmnp.com/wp-content/uploads/View-of-Smoky-Mountains-from-Oconaluftee.jpg

http://www.charlottesgotalot.com/charlotte-skyline-5

realestateagentchapelhill.com/images/chapel_hill/chapel_hill_restaurants.jpg

banc-online.org/wp-content/uploads/2015/04/chapel-hill.jpg

static1.squarespace.com/static/537261a3e4b06f7436cc8d37/t/537267e1e4b0e957bf27f2c1/1400006668251/IMG_3616.jpg

ezilon.com/maps/images/usa/north_carolina_simple.gif

Save

Save

Save

Save

Save

Save

200 Years Ago James Parkinson published “An Essay On The Shaking Palsy”

“I have a form of Parkinson’s disease, which I don’t like. My legs don’t move when my brain tells them to. It’s very frustrating.” George H.W. Bush

“I discovered that I was part of a Parkinson’s community with similar experiences and similar questions that I’d been dealing with alone.” Michael J. Fox

Summary: Two hundred years ago in 1817, Dr. James Parkinson published “An Essay On The Shaking Palsy”, which was the first medical document to fully describe Parkinson’s disease  (please click here to read a full-length version of Parkinson’s essay). A short synopsis of the essay and his life are included here.

James Parkinson and his essay from 1817

Who was James Parkinson?   I’ve read several review articles about Dr. Parkinson,  and it is clear to me he was a very intelligent, passionate and compassionate person: “James Parkinson (1755–1824) worked as a general practitioner in the semi-urban hamlet of Hoxton, north east of the City of London, where he had been born, and where he lived all his life. The historian Roy Porter considered Parkinson a man ‘with impeccably enlightened credentials,’ a doctor with a highly developed empiricist bent, committed to observation and recording of the human and natural worlds, and faithful to social and political ideals including widening of the franchise and improvements in the material conditions of the majority of people. In addition to his daily work in general practice, James Parkinson was a public health reformer, an advocate of infection control in London workhouses, a medical attendant to a Hoxton madhouse, a writer of political pamphlets and children’s stories, a geologist and fossilist, and the author of a textbook of chemistry.” ( click here to read the full citation)

Review about Dr. Parkinson: (click here to read article), Morris, AD (April 1955). “James Parkinson, born April 11, 1755”. Lancet. 268 (6867): 761–3. PMID 14368866.

Title page to the essay: (click here for a nice historical perspective of Parkinson’s disease). Publication: Parkinson J. 1817. An essay on the shaking palsy. Whittingham and Rowland for Sherwood, Needly and Jones, London. .

Parkinson.paper

The Essay: Much has been written about the essay composed by Dr. Parkinson. Simply stated it is remarkably accurate in its depiction of Parkinson’s disease, which he called shaking palsy.   My goal in this post is not to exhaustively review his essay;  however, after reading this overview I hope you decide to read the essay. (Click here to read a full-length version of Parkinson’s essay).

 Definition of a new disease:  Dr. Parkinson described it as a disease that had an “Involuntary tremulous motion, with lessened muscular power, in parts not in action and even when supported; with a propensity to bend the trunk forwards, and to pass from a walking to a running pace: the senses and intellects being uninjured.”   We know today that there are both motor and non-motor issues involved with Parkinson’s.

Knowledge that the patients were suffering:  Dr. Parkinson was most aware of what these patients were going through “the unhappy sufferer has considered it as an evil, from the domination of which he had no prospect of escape.”

Detailed and exacting description of the patients:  One of the more  interesting features about the essay is the detailed description of the six patients Dr. Parkinson observed: “So slight and nearly imperceptible are the first inroads of this malady, and so extremely slow its progress, that it rarely happens, that the patient can form any recollection of the precise period of its commencement. The first symptoms are a slight sense of weakness, with a proneness to trembling in some particular part; sometimes in the head, but most commonly in one of the hands and arms.” And here as well, “But as the malady proceeds, even this temporary mitigation of suffering from the agitation of the limbs is denied. The propensity to lean forward becomes invincible, and the patient is thereby forced to step on the toes and fore part of the feet, whilst the upper part of the body is thrown so far forward as to render it difficult to avoid falling on the face. In some cases, when this state of the malady is attained, the patient can no longer exercise himself by walking in his usual manner, but is thrown on the toes and forepart of the feet; being, at the same time, irresistibly impelled to take much quicker and shorter steps, and thereby to adopt unwillingly a running pace. In some cases it is found necessary entirely to substitute running for walking; since otherwise the patient, on proceeding only a very few paces, would inevitably fall.”  Dr. Parkinson also noted there was a sleeping disorder component, “In this stage, the sleep becomes much disturbed. The tremulous motion of the limbs occur during sleep, and augment until they awaken the patient, and frequently with much agitation and alarm.”

Hope for a cure: After describing the six patients in his essay, Dr. Parkinson postulated whether or not there was going to be a cure for this new disease? “On the contrary, there appears to be sufficient reason for hoping that some remedial process may ere long be discovered, by which, at least, the progress of the disease may be stopped. It seldom happens that the agitation extends beyond the arms within the first two years; which period, therefore, if we were disposed to divide the disease into stages, might be said to comprise the first stage. In this period, it is very probable, that remedial means might be employed with success: and even, if unfortunately deferred to a later period, they might then arrest the farther progress of the disease, although the removing of the effects already produced, might be hardly to be expected.”   We’ve come a long way in two hundred years in our understanding of this disease; however, we’ve yet to cure Parkinson’s.

A new disease:  Dr. Parkinson was convinced he had described a new disease. As neurology evolved over the next several decades, others read the essay and agreed. Dr. Jean-Martin Charcot  (the acknowledged father of modern neurology) suggested that Dr. Parkinson’s name be linked to the disease he had so accurately described; thus, “maladie de Parkinson” (Parkinson’s disease).  For an additional summary on Parkinson’s disease, and the man behind the discovery please click here

Closing thoughts about Dr. Parkinson: Clearly, Dr. Parkinson was a most talented individual; he was driven to be a good physician and to be an observant scientist.  With  this attention to detail, he was the first to really accurately describe this disease. And  if that wasn’t enough, Dr. Parkinson had a fossil named after him  because  of his interest in geology and paleontology if you’re interested in additional aspects of his life please click and read this paper. I  encourage you to look through any of the papers cited here; you will gain tremendous respect for Dr. James Parkinson.

 To conclude, here are three quotes about Parkinson’s disease:
“realized while I was announcing myself to the group that I was conceding something profound: that the diagnosis marked an irreversible change in my identity, the moment that one version of me ended and another version” Jon Palfreman (Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease)
•The next time you are imagining the worst, look up the definition of imagination.” Robert Lyman Baittie (Tremors in the Universe: A Personal Journey of Discovery with Parkinson’s Disease and Spirituality)
•”Without the quest, there can be no epiphany.” Constantine E. Scaros (Reflections on a Simple Twist of Fate: Literature, Art and Parkinson’s Disease)

 

Cover photo credit: https://s-media-cache-ak0.pinimg.com/originals/55/3d/2c/553d2ccd51dd6610cfa91939c4905b96.jpg

Save

Save

Save

Save

Save

Save

Save