Category Archives: Life

2018 Parkinson’s Awareness Month and 65 Quotes to Support Your Life With Parkinson’s

“Don’t give up. Don’t ever give up.” Jim Valvano

“Courage starts with showing up and letting ourselves be seen.” Brené Brown

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.

Description of Parkinson’s disease: Instead of the usual written narrative, here are a couple of video presentations.

NPFiconFor further information also see: Understanding Parkinson’s.

 65* Quotes on Adversity, Hope, Journey, Life, and Persistence to Help You During the ‘Off-moments’ and to Remind You to Never Give up (*Why 65? My age later this year):

  1. “To me, hope is informed optimism.” Michael J. Fox
  2. “The truth is that on most days, there comes a point where I literally can’t stop laughing at my own symptoms.” Michael J. Fox
  3. “The strongest people are not those who show strength in front of us but those who win battles we know nothing about.” Anonymous

  4. “Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” Glenn Schweitzer
  5. “Friendship is the hardest thing in the world to explain. It’s not something you learn in school. But if you haven’t learned the meaning of friendship, you really haven’t learned anything.”Muhammad Ali
  6. “Impossible is just a big word thrown around by small men who find it easier to live in the world they’ve been given than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.” Muhammad Ali
  7. “Sometimes the smallest step in the right direction ends up being the biggest step of your life. Tip Toe if you must, but take a step.” Naeem Callaway
  8. “When the unthinkable happens, the lighthouse is hope. Once we choose hope, everything is possible.”  Christopher Reeve
  9. “Believe in yourself and all that you are. Know that there is something inside of you that is greater than any obstacle.” Christian D. Larson
  10. “You shouldn’t focus on why you can’t do something, which is what most people do. You should focus on why perhaps you can, and be one of the exceptions.” Steve Case
  11. “Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don’t give up.” Anne Lamott
  12. “You are strong when you know your weaknesses. You are beautiful when you appreciate your flaws. You are wise when you learn from your mistakes.”  unknown
  13. “Champions aren’t made in gyms. Champions are made from something they have deep inside them—a desire, a dream, a vision. They have to have last-minute stamina, they have to be a little faster, they have to have the skill and the will. But the will must be stronger than the skill.”Muhammad Ali
  14. “The strongest people I’ve met have not been given an easier life. They’ve learned to create strength and happiness from dark places.”  Kristen Butler
  15. “You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” Josh Shipp
  16. “It’s not selfish to love yourself, take care of yourself, and to make your happiness a priority.” Mandy Hale
  17. “Live to inspire, and one day people will say, because of you, I didn’t give up” unknown
  18. Some days are better, some days are worse. Look for the blessing instead of the curse. Be positive, stay strong, and get enough rest. You can’t do it all, but you can do your best. Doe Zantamata
  19. “I can’t tell you when, but I can promise you it will get better, it will get easier, and it will all be worthwhile. Just promise me you won’t ever give up.” unknown
  20. “Maybe life isn’t about avoiding the bruises. Maybe it’s about collecting the scars to prove that we showed up for it.” Hannah Brecher
  21. “We are stronger in the places we have been broken.” Ernest Hemingway
  22. “Just put one foot in front of the other.”  Austin Peck
  23. “Coming together is a beginning; keeping together is progress; working together is success.”  Henry Ford
  24. “Alone we can do so little; together we can do so much.”  Helen Keller
  25. “If everyone is moving forward together, then success takes care of itself.”  Henry Ford
  26. “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
  27. “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
  28. “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
  29. “If you stumble, make it part of the dance.” unknown
  30. “If opening your eyes, or getting out of bed, or holding a spoon, or combing your hair is the daunting Mount Everest you climb today, that is okay.” Carmen Ambrosio
  31. “Please be patient with me. Sometimes when I’m quiet, it’s because I need to figure myself out. It’s not because I don’t want to talk. Sometimes there are no words for my thoughts.”  Kamla Bolaños
  32. “What would the hero of your life’s movie do right now? Do that!” Joe Rogan
  33. “Inspirations knock and hang around for a while and wait for some kind of response, which is the beginning of a creative act.” Thomas Moore
  34. “What you do makes a difference, and you have to decide what kind of difference you want to make.” Jane Goodall
  35. “What’s meant to be will always find a way” Trisha Yearwood
  36. “Do not pray for an easy life, pray for the strength to endure a difficult one.”  Bruce Lee
  37. “One who gains strength by overcoming obstacles possesses the only strength which can overcome adversity.” Albert Schweitzer
  38. “When we long for life without difficulties, remind us that oaks grow strong in contrary winds and diamonds are made under pressure.” Peter Marshall
  39. “Ask yourself what problem you have right now. Not next year, tomorrow or five minutes from now. You can always cope with the now, but you can never cope with the future. Nor do you have to. The answer, the strength and the right action will be there when you need it. Not before or after.” Eckhart Tolle
  40. “Pain is temporary. It may last a minute, or an hour, or a day, or a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever.” Lance Armstrong
  41. “If you are depressed you are living in the past.
    If you are anxious you are living in the future.
    If you are at peace you are living in the present.”
    Lao Tzu
  42. “To die is poignantly bitter, but the idea of having to die without having lived is unbearable.” Erich Fromm
  43. “Sometimes the hardest part isn’t letting go but rather learning to start over.” Nicole Sobon
  44. “You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.” Thomas Merton
  45. “The journey of a thousand miles begins with one step.” Lao Tzu
  46. “Everyone is handed adversity in life. No one’s journey is easy. It’s how they handle it that makes people unique.” Kevin Conroy
  47. “You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.” Eleanor Roosevelt
  48. “Hope is faith holding out its hand in the dark.” George Iles
  49. “Every day you may make progress. Every step may be fruitful. Yet there will stretch out before you an ever-lengthening, ever-ascending, ever-improving path. You know you will never get to the end of the journey. But this, so far from discouraging, only adds to the joy and glory of the climb.” Winston S. Churchill
  50. “Hope is being able to see that there is light despite all of the darkness.” Desmond Tutu
  51. “Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today.” Thich Nhat Hanh
  52. “There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” Orison Swett Marden
  53. “Courage is not having the strength to go on; it is going on when you don’t have the strength. ”Theodore Roosevelt
  54. “The most authentic thing about us is our capacity to create, to overcome, to endure, to transform, to love and to be greater than our suffering.” Ben Okri
  55. “Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.” Kelly Hemingway
  56. “You may be the only person left who believes in you, but it’s enough. It takes just one star to pierce a universe of darkness. Never give up.” Richelle E. Goodrich
  57. “You can have anything you want if you want it badly enough. You can be anything you want to be, do anything you set out to accomplish if you hold to that desire with singleness of purpose.” Abraham Lincoln
  58. “Whatever you are, be a good one.” Abraham Lincoln
  59. “I know now, after fifty years, that the finding/losing, forgetting/remembering, leaving/returning, never stops. The whole of life is about another chance, and while we are alive, till the very end, there is always another chance.” Jeanette Winterson
  60. “Affliction comes to us, not to make us sad but sober; not to make us sorry but wise.” H.G. Wells
  61. “Since receiving my Parkinson’s diagnosis, my opinion of exercise has changed.  With Parkinson’s, I’m now exercising as if my life depends on it.”  Frank C. Church
  62. We are identified by our characteristic symptoms of our unwanted companion named Parkinson’s. We are all in this together, united by our disorder; held together by those who love and care for us.” Frank C. Church
  63. Today renews your lease on the rest of your life, enjoy it (get up, get out, get going). Today acknowledge your Parkinson’s; give it a nudge, because you are ready for the battle and for life.” Frank C. Church
  64. “The sum total of our health is a complex formula that differs slightly for each one of us.  Those of us with a progressive neurodegenerative disorder like Parkinson’s increases the complexity of this life-equation.” Frank C. Church
  65. “Living with Parkinson’s requires you to adapt to its subtle but progressive changes over a long period of time; you need to remain hopeful for many different things.” Frank C. Church

“When nothing seems to help, I go and look at a sonecutter hammering away at his rock, perhaps a hundred times without as much as a crack showing in it. Yet at the hundred and first blow it will split in two, and I know it was not that last blow that did it, but all that had gone before.”  Jacob A. Riis

Cover photo credit: https://uspstrackingtool.com/red-tulips-bouquet-of-flowers-wallpaper/

 

A Good Life With Parkinson’s

“I choose to make the rest of my life the best of my life.” Louise Hay

“Avoiding problems you need to face is avoiding the life you need to live.” Paulo Coelho

Try to live following the advice of the opening quotes: Today renews your lease on the rest of your life, enjoy it (get up, get out, get going). Today acknowledge your Parkinson’s; give it a nudge, because you are ready for the battle and for life.

18.01.13b.Live_Better_PD

Live a better and healthier life by following this circle of words [yes, they all begin with the letter ‘F’ (click here to download the schematic above)]:
Fit/fitness-
Exercise as much as your body can take, then do some more. Getting/staying fit really matters in your battle with Parkinson’s.

Fortitude-
Stay strong in your effort with your adversity.

Food- Feed your brain properly, fuel your body well; it will make a difference.

Flexible (two definitions)-
Stay flexible by frequent (I mean really often) stretching; you’ve got a life-altering disorder, stay flexible and let your life follow what happens because it’ll be okay.

Fulltime– It takes time and effort to manage your life. You can find the time because managing your life well from this minute on will matter later in your life;

Faith (multiple definitions)– Believe in your ability to successfully navigate your life; trust in your loved ones to support your journey; believe that a higher entity truly loves you and acknowledges your strength and passion for life.

Forty-winks and sleep some more- The brain is like a sponge that fills up all day with fluid; sleep allows the brain to drain, to renew, to fire-up strong upon waking; sleep is a very good thing.

A Good Life With Parkinson’s: Our Common Bond and Hope
I feel your stiffness; I know it well.

I sense your troubled thoughts; my mind also has questions.
I notice your tremor; mine can act up too.
I perceive your frustation; life with Parkinson’s can be problematic.
I see your shuffle; my right leg drags when I’m tired.
I admire your strength; I’ve got it too.
I acknowledge your life-accomplishments; we are still the same person as before Parkinson’s.
I see your honor; our work our living makes a difference.
I see your smile; those around us still care for us, no matter what.
I feel your effort; like you, I’ll never give up.

“Life is an opportunity, benefit from it. Life is beauty, admire it. Life is a dream, realize it. Life is a challenge, meet it. Life is a duty, complete it. Life is a game, play it. Life is a promise, fulfill it. Life is sorrow, overcome it. Life is a song, sing it. Life is a struggle, accept it. Life is a tragedy, confront it. Life is an adventure, dare it. Life is luck, make it. Life is too precious, do not destroy it. Life is life, fight for it.” Mother Teresa

Cover photo credit: http://ognature.com/path-snow-winter-mist-sunset-sun-trees-wallpaper-iphone-6/

 

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

 

 

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Sleep Disturbances in Parkinson’s and the Eagles Best Song Lyrics

“There is a time for many words, and there is also a time for sleep.” Homer, The Odyssey

“Man is a genius when he is dreaming.” Akira Kurosawa

Précis: There are many manifestations associated with Parkinson’s; one of the more frustrating aspects is the alteration of sleep patterns.  Herein is a brief overview of sleep disturbances in Parkinson’s.  And in a recent evening of insomnia, I compiled a list of some of my favorite lyrics by the American rock band “the Eagles”.

Sleep problems associated with Parkinson’s: The vast majority, >90%, of people-with-Parkinson’s have some sleep-related problems. The factors related to disrupted sleep pattern in Parkinson’s can broadly be classified as follows:  (1) Parkinson’s-related; (2) treatment-related; (3) psychiatric-related; and (4) other sleep-related manifestations. For further review, please see the following articles: Garcia-Borreguero et al., “Parkinson’s disease and sleep” (click here for the PubMed citation); Barone et al., “Treatment of nocturnal disturbances and excessive daytime sleepiness in Parkinson’s disease” (click here for the PubMed citation) and Chaudhuri et al. “Non-motor symptoms of Parkinson’s disease: diagnosis and management” (click here for the PubMed citation). An expanded description of some of the sleep disturbances in Parkinson’s is given below:

  • Parkinson’s related motor symptoms that could alter sleep patterns include disruption from tremor, difficulty in turning over in bed, impairment of voluntary movement (akinesia), abnormal muscle tone that results in muscular spasm and abnormal posture (dystonia), and painful cramps.
  • Therapy-related nocturnal disruption of sleep from legitimate Parkinson’s drugs, e.g., dopamine agonists, levodopa/carbidopa, and certain antidepressants. The known side-effects of the ‘gold-standard’ of treatment levodopa/carbidopa include: dizziness, loss of appetite, diarrhea, dry mouth, mouth and throat pain, constipation, change in sense of taste, forgetfulness or confusion, nervousness, nightmares, difficulty falling asleep or staying asleep, and headache.
  • A significant portion of people-with-Parkinson’s exhibit psychiatric symptoms.  The most frequent manifestations, which could alter one’s sleep pattern include vivid dreams, insomnia, hallucinations, psychosis, panic attacks, depression, and dementia.
  • Finally, there are other sleep-related disorders linked to Parkinson’s, which include excessive daytime sleepiness, insomnia, restless legs syndrome, periodic leg movements, and sleep apnea.

“Daytime sleep is like the sin of the flesh; the more you have the more you want, and yet you feel unhappy, sated and unsated at the same time.” Umberto Eco, The Name of the Rose

Sleep-related problems from Parkinson’s: Many people-with-Parkinson’s have a difficult time sleeping throughout the night. With or without Parkinson’s, a good night’s rest is critical to feeling well. Thus, understanding and treating the cause of the sleep-related disorder from Parkinson’s is important.  The list described above is somewhat intimidating; especially in trying to sort out the primary-cause(s) of sleep problems from Parkinson’s. My sleeping problems seem to be related to the timing of when I take levodopa/carbidopa (I need to re-focus my effort to take it at the right time each day; not late in the evening), renew my nightly melatonin therapy (3 mg capsule 1-2 h before sleep); sleep apnea (now being treated by CPAP), and stress related to my work deadlines/professional goals-expectations (now being dealt with by increased time for exercise and better use of mindfulness-meditation).

Dealing with sleep-related issues from Parkinson’s is both complex and frequently multi-factorial. Therefore, given below are some websites that may offer guidance and suggestions to better handle your sleep disorder from Parkinson’s:

  • Nighttime Parkinson’s issues and how they can be treated (click here);
  • Sleep Disorders and Parkinson’s Disease (click here);
  • Sleep Disturbances (click here);
  • Parkinson’s Disease and Sleep (click here);
  • Problems with Sleep at Night (click here);
  • And from this blog: Sleep, Relaxation, and Traveling (click here); 7 Healthy Habits For Your Brain (click here);  and try dealing with the stress from and the reality of Parkinson’s using Contentment, Gratitude, And Mindfulness (click here).

“Am I sleeping? Have I slept at all? This is insomnia.” Chuck Palahniuk, Fight Club

“Frank, what’s your favorite line from an Eagles song?”:  A recent Sunday morning on the golf course, my golf buddy and good friend Kim asked Frank, what’s your favorite line from an Eagles song?”; yes, it came our of nowhere.  My initial response was “You can see the stars and still not see the light”.  He quickly replied “We live our lives in chains and we never even know we have the key.” And I followed up with “I’m standing on a corner in Winslow Arizona and such a fine sight to see.”  We talked briefly about the Eagles from the early 1970’s and their song lyrics; however, the thought stayed with me.  If you need a reminder about the Eagles: “The Eagles were an American rock band formed in Los Angeles in 1971 by Glenn Frey, Don Henley, Bernie Leadon, and Randy Meisner. With five number-one singles, six Grammy Awards, five American Music Awards, and six number one albums, the Eagles were one of the most successful musical acts of the 1970s.” [for more information, see https://en.wikipedia.org/wiki/Eagles_(band)%5D

“I grew up with another pretty darn good writer: Glenn Frey of the Eagles. We were very good friends, and we kind of studied it together.” Bob Seger

The lyrics from the Eagles songs take us to the limit(s) of our imagination: For me, great music has a memorable beat and meaningful lyrics; and you can just remember these songs years later. The Eagles were wonderful musicians, harmonized beautifully, and wrote songs with a lot of imaginative/descriptive lyrics. The other night, I started listening to the Eagles and decided to compile a list of some of their best (i.e., my favorite) lyrics. I had iTunes open and would start listening and then search for lyrics to certain songs (those that brought back the most memories).  I also used my Echo Dot by saying things like “Alexa, play Desperado by the Eagles”.   At 5:00 AM the next morning, I had 27 favorite lyrics from 24 songs; the result of a very fun and reflective evening.  There is no accompanying narrative to the included lyrics, just the song title/album title/album cover.  All lyrics for the songs by the Eagles were found here: http://www.azlyrics.com/

 “The records in the house I really remember were, well, Glen Campbell’s ‘Wichita Lineman’ and ‘Galveston.’ Even as a kid, I knew these songs were glorious. My dad also had records by Merle Haggard, Charley Pride, Waylon Jennings, and then there was also the Eagles and Don Henley. Anything Texas, which includes Don Henley, was big.”  Keith Urban

Album: “The Eagles” (1972)

01-eagles-1972

“Take It Easy”
I gotta know if your sweet love is
gonna save me
We may lose and we may win though
we will never be here again

“Peaceful Easy Feeling”
I like the way your sparkling earrings lay,
Against your skin, it’s so brown.
And I wanna sleep with you in the desert tonight
With a billion stars all around.

“Most Of Us Are Sad”
Most of us are sad
No one lets it show
I’ve been shadows of myself
How was I to know?

Most of us are sad it’s true
Still we must go on

Album: “Desperado” (1973)

02-desperado-1973

“Desperado”
It may be rainin’, but there’s a rainbow above you
You better let somebody love you (let somebody love you)
You better let somebody love you before it’s too late

“Saturday Night”
What a tangled web we weave
Go ’round with circumstance
Someone show me how to tell the dancer
From the dance

“Doolin-Dalton / Desperado Reprise”
The queen of diamonds let you down,
She was just an empty fable
The queen of hearts you say you never met

Album: “On The Border” (1974)

03-on-the-border-1974

“Already Gone”
Just remember this, my girl, when you look up in the sky
You can see the stars and still not see the light (that’s right)

“Already Gone”
So often times it happens that we live our lives in chains
And we never even know we have the key

“My Man”
No man’s got it made till he’s far beyond the pain
And we who must remain go on living just the same

“The Best Of My Love”
I’m goin’ back in time
And it’s a sweet dream
It was a quiet night
And I would be all right
If i could go on sleepin’

“The Best Of My Love”
But here in my heart I give you the best of my love

Album: “One Of These Nights” (1975)

04-one-of-these-nights-1975

“One Of These Nights”
The full moon is calling
The fever is high
And the wicked wind whispers
And moans

“Take It To The Limit”
If it all fell to pieces tomorrow
Would you still be mine?

“Lyin’ Eyes”
Ain’t it funny how your new life didn’t change things
You’re still the same old girl you used to be

Album: “Hotel California” (1976)

06-hotel-california-1976

“Victim Of Love”
Some people never come clean
I think you know what I mean
You’re walkin’ the wire, pain and desire
Looking for love in between

“Hotel California”
“Please bring me my wine”
He said, “We haven’t had that spirit here since nineteen sixty nine”
And still those voices are calling from far away,
Wake you up in the middle of the night

“Hotel California”
Some dance to remember, some dance to forget

“New Kid In Town”
You look in her eyes; the music begins to play
Hopeless romantics, here we go again

“Wasted Time”
And maybe someday we will find , that it wasn’t really wasted time

Album: “The Long Run” (1979)07-the-long-run-1979

“I Can’t Tell You Why”
Aren’t we the same two people who live
through years in the dark?
Ahh…
Every time I try to walk away
Something makes me turn around and stay
And I can’t tell you why

“The Sad Cafe”
Some of their dreams came true,
some just passed away
And some of them stayed behind
inside the Sad Cafe.

Album: “Eagles Live” (1980)08-eagles-live-1980

“Seven Bridges Road”
There are stars in the Southern sky
And if ever you decide
You should go
There is a taste of thyme sweetened honey
Down the Seven Bridges Road

Album: “Hell Freezes Over” (1994)

10-hell-freezes-over-1994

“Get Over It”
Complain about the present and blame it on the past
I’d like to find your inner child and kick its little ass

“Love Will Keep Us Alive”
I was standing
All alone against the world outside
You were searching
For a place to hide
Lost and lonely
Now you’ve given me the will to survive
When we’re hungry, love will keep us alive

“Learn To Be Still”
Now the flowers in your garden
They don’t smell so sweet
Maybe you’ve forgotten
The heaven lying at your feet

“Pretty Maids All In A Row”
Why do we give up our hearts to the past?

 Album: “Long Road Out Of Eden” (2007)

12-long-road-out-of-eden-2007

“It’s Your World Now”
A perfect day, the sun is sinkin’ low
As evening falls, the gentle breezes blow
The time we shared went by so fast
Just like a dream, we knew it couldn’t last
But I’d do it all again
If I could, somehow
But I must be leavin’ soon
It’s your world now

“I’ve dreamed a lot. I’m tired now from dreaming but not tired of dreaming. No one tires of dreaming, because to dream is to forget, and forgetting does not weigh on us, it is a dreamless sleep throughout which we remain awake. In dreams I have achieved everything.” Fernando Pessoa

Cover photo credit: https://s-media-cache-ak0.pinimg.com/originals/e5/aa/eb/e5aaeb8a5363fdeacccb567becee86b6.jpg

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2016 Whitehead Lecture: Advice, Life Stories and the Journey with Parkinson’s

“In giving advice I advise you, be short.” Horace

“The journey is what brings us happiness not the destination.” Dan Millman

Introduction: Last month, I presented the Whitehead Lecture to the UNC School of Medicine (SOM).  Here is what that means: “The annual Whitehead Lecture serves as an unofficial convocation for the School of Medicine. It is named in honor of Dr. Richard Whitehead, dean of the School of Medicine from 1890 to 1905. The Whitehead Lecturer is chosen by the SOM medical student governing body (Whitehead Medical Society). The selection is based on qualities of leadership, dedication, and devotion to medicine and teaching. Being elected to deliver the Whitehead Lecture is among the highest honors for faculty members at the School of Medicine.” (excerpted from https://www.med.unc.edu/md/events-awards/academic-calendars-events/whitehead-lecture).

In my 30-something year academic career at UNC-CH this was the biggest honor I’ve  received from the School of Medicine.  Here is a link to the news article written about my ~15-min lecture and the other teaching awards given to faculty, residents/fellows, and medical students (click here).

slide01

Themes of Advice:  Below is a summary of the advice I gave to UNC-CH medical students to help them through their medical school journey (realizing I’m not a physician but a medical educator/biomedical researcher).  The lecture was divided up into 4 chapters: Chapter 1: Conflict of Interest Statement (this was done to start lightheartedly and to ‘try’ to be funny); Chapter 2: Core Values Learned from Growing up an “Air Force Brat” (childhood memories of my dad, Col. Church)Chapter 3: Life Stories and Advice Using Words that Begin with “H” (I  made a word-cloud with numerous words/phrases, e.g., Hope, Happy, Hospital, and Healthy Habits Harbor Happiness); and Chapter 4: Conclusions.

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The advice/stories were accompanied by numerous pictures and my own personal-life-events to emphasize my side of my own advice.  Advice I tried to convey to the medical students regarding my Parkinson’s disease was as follows: (a) acceptance and adaptation while still living positively; (b) adversity is rarely planned but you must be proactive as it accompanies life; and (c) a wide range of illness (from good to bad) accompanies most disorders; thus, it matters how you approach and treat each individual person (patient) with every disorder.

“My definition of success: When your core values and self-concept are in harmony with your daily actions and behaviors.” John Spence

“Never let your head hang down. Never give up and sit down and grieve. Find another way.” Satchel Paige

Chapter 1: Conflict of Interest Statement:

slide02

Chapter 2: Core Values Learned from Growing up as an “Air Force Brat:

slide1Core Value of Integrity:
A cornerstone of my dad’s influence on me was integrity, to always be honest.
Everything I did growing up needed teamwork and integrity added strength to each team.
•Your integrity leads you forward.
“Be as you wish to seem.” Socrates

Core Value of Service:
The USAF interpretation of service is a commitment to serve your country before self.
My commitment to service and to helping others is through education and biomedical research.
•Your own service enriches your life.
“To work for the common good is the greatest creed.” Albert Schweitzer

Core Value of Excellence:
The core value of excellence revolves around doing the task proudly and right.
My dad instilled in me the notion to work hard, centered on excellence because the task mattered no matter the importance of the task.
Through this same excellence, your life matters.
“Excellence is doing ordinary things extraordinarily well.” John W. Gardner

Chapter 3: Life Stories and Advice Using Words that Begin with “H”:

slide08Help/Helpful/Helped:
There will be times when classmates, team members, and patients ask you for help/advice; always try to be helpful.
You may need to be helped on some topic-issue; that is totally okay, you are not expected to do it all by yourself.
“If
you light a lamp for somebody, it will also brighten your path.” Gautama Buddha

Colleagues Who Have Helped Me To Become A Better Educator:
A very important part of my career is centered around medical education.  I am fortunate to have colleagues who are gifted teachers, who serve as wonderful role models, and who have given me sound advice/feedback on new teaching strategies and educational ideas.
This group includes Dr. Alice Ma, Dr. Tom Belhorn, SOM Teaching Champions (Dr. Kurt Gilliland, Dr. Ed Kernick, Dr. Gwen Sancar, Dr. Arrel Toews, Dr. Marianne Meeker, Dr. Sarah Street and this group included me), Dr. Joe Costello, Johanna Foster and Katie Smith.
Since joining the Department of Pathology and Laboratory Medicine as an Assistant Professor (1987), I have had the privilege of teaching ~6,000 students (26 years of medical students x ~170 students/year = 4,420; 23 years of graduate students x ~20 students/year = 460; and 20 years of ~75 undergraduates/year = 1,500).

Find Your Holy Grail in Higher Education:
Challenge yourself, be goal-directed and discover where your passion resides (it could be patient care, research, education, service, policy, outreach, etc.).
Stay engaged in pursuit of your hallmark in higher education, which becomes your very own Holy Grail.
If you’re not happy, keep searching.
“What is known as success assumes nearly as many aliases as there are those who seek it. Like the Holy Grail, it seldom appears to those who don’t pursue it.” Stephen Birmingham

My Holy Grail in Higher Education (Hemostasis-Thrombosis Research):
34 years ago, 1982, I began my postdoctoral fellowship in the laboratory of Dr. Roger Lundblad. Since 1986, as a basic biomedical researcher in the Department of Pathology and Laboratory Medicine [Research Assistant Professor (1985-1986), Assistant Professor (1987-1994), Associate Professor (with tenure, 1994-1999), and Professor (with tenure, 1999-present)] , I have had a wonderful and enriching academic research career that has helped train over 100 scientists: 17 graduate students; 12 postdoctoral fellows; 17 medical students; and 65 undergraduates.
My research (Holy Grail) is centered on:
Biological Chemistry of Coagulation Proteases and their Serine Protease Inhibitors (Serpins);
-Aging
and Senescence-linked to the Pathophysiology of Venous
Thrombosis;
-Funding through NIH (NHLBI, NIA, and NINDS), American Heart Association, and Susan G. Komen for the Cure.

Shown below left is the antithrombin/thrombin/heparin complex and below right, a 30-year history of some of the former/current lab personnel (1987, 2003, and 2016).

slide14

Handle Adversity in Your Journey:
We have expectations of what life should be like and what it should offer us; instead, accept what life gives you at the moment.
When life presents an obstacle, do your best to
handle adversity in your journey.
Life’s challenges are not supposed to paralyze you, they’re supposed to help you discover who you are.” Bernice Johnson Reagon

slide17Handling Adversity in My Journey:
Parkinson’s is a slowly progressing neurodegenerative disorder from the loss of dopamine-producing cells.
Dealing with an incurable disease like Parkinson’s is different than living with a terminal illness; you must accept that it’s part of your life for years to come.
Strive to live-forward, and always remember that we’re still in the driver’s seat of our world. Live decisively even as we accept the problems from Parkinson’s.” Frank C. Church

slide19Home Is Where The Heart Is:
1.Home is where the heart is. You love the place best which you call your home. That is where your heart lives.
2.Home is where the heart is. Wherever you feel most at home is where you feel you belong. That is where your heart is.
3.Your home may change many times over the coming years. Let your heart tell you where your home is.

Home Is Where My Heart Is (or Has Been for the Past 50 Years):
On a tennis court and on a golf course;
In a research laboratory and in a classroom teaching;
With family/loved ones.
“Let your heart tell you where your home is.”  Frank C. Church

home

Health (Heal, Healed, Healer):
Your foundation of knowledge is expanding to allow you to make decisions related to someone’s health.
You’ll likely encounter a spectrum of illness in your patients; health is like a rheostat that ranges from good to bad, mild to severe. Remember, you are treating a person with a disorder/illness.
“It is much more important to know what sort of a patient has a disease than what sort of a disease a patient has.” William Osler

Health (Heal, Healed, Healer) From My Perspective With Parkinson’s:
A Google search for “Parkinson’s disease: Images” shows these drawings from the 1880’s are still very prevalent (below left panel).
Yes, they accurately show the Cardinal signs of Parkinson’s: tremor, rigidity from muscle stiffness, bradykinesia (slowness of movement), postural instability, and facial masking.
However, these images suggest to many that all people-with-Parkinson’s must look and act like this.
An emerging picture of Parkinson’s today is (hopefully, below right panel) a person embracing an appropriate lifestyle with a treatment plan to manage and live with their symptoms.
My daily mantra: “Never give up; I refuse to surrender to Parkinson’s.” Frank C. Church

health

Chapter 4: Conclusions:
I am most pleased to welcome all of the new medical students (MS-1’s) to medical school and to everyone else, we’re glad you’re here.
The “USAF core values” could be of some use in your professional career and in your personal life.
Remember the “words that begin with the letter H”; they could be both supportive and comforting in your years of training.
We have one final “H word” to get through but I need YOUR voices…

slide29

“I believe that curiosity, wonder and passion are defining qualities of imaginative minds and great teachers; that restlessness and discontent are vital things; and that intense experience and suffering instruct us in ways that less intense emotions can never do.” Kay Redfield Jamison

Cover photo credit: Frank Church

Home Is Where The Heart Is: (1) and (2) partly adapted from Anila Syed, Wordophile.

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The 23andMe Parkinson’s Research Study

“Somewhere, something incredible is waiting to be known.” Carl Sagan

“A dream doesn’t become reality through magic; it takes sweat, determination and hard work.” Colin Powell

Introduction/Background: Parkinson’s disease is a neurodegenerative disorder that affects movement. It evolves slowly, usually starting as either stiffness in a hand or a small tremor. Over time, Parkinson’s progresses; typically characterized by motor symptoms such as slowness of movement (bradykinesia) with rigidity, resting tremor (Parkinsonian tremor), balance and walking problems, and difficulty swallowing and talking. Parkinson’s has several non-motor symptoms including anxiety, depression, insomnia  and psychosis (just to mention a few). ~60,000 new cases of Parkinson’s disease are diagnosed each year in the United States, adding to the greater than one million people who currently have Parkinson’s.  It has been estimated that 7-10 million people worldwide are living with Parkinson’s.

“Enclose your heart in times of need with the steel of your determination and your strength. In doing this, all things will be bearable.” Lora Leigh

Genetic Testing and Introduction/Background to 23andMe:
What is the “Central Dogma of Life”? (click here) The process of how the information and instructions found in DNA to become a functional protein is termed the ‘Central Dogma’.  The concept of the central dogma was first proposed in 1958 by Francis Crick, one of the discoverers of the structure of DNA. The central dogma states that the pattern of information that occurs most frequently in our cells is as follows: (i) use existing DNA to make new DNA  (replication); (ii) next, from DNA to make new RNA (transcription); and (iii) finally, using RNA to synthesize new protein (translation). The drawing below depicts the central dogma (the drawing is from this video, click here).


23andMe: What does the name 23andMe represent? Our genetic material  (genes) are housed in chromosomes and they are composed of DNA. We have 23 pairs of chromosomes in each cell capable of producing new proteins; thus, the name of the company makes sense.  23andMe provides DNA testing services.  The information derived from studying your DNA and genetic make-up can provide information about your ancestry, your genetic predisposition to many different diseases, drug responses and inherited conditions.

16.07.21.3.

“When burned on a CD, the human genome is smaller than Microsoft Office.” Steve Jurvetson

There’s an old saying that goes “Mother is always right.”:  My mother said for her entire life that we were English, Scottish (or Irish), French and German in our ancestral ‘gene pool’.  Several years ago, my extended family and I took to spitting into the 23andMe test-tubes.  We mailed them back to the company to establish our genetic history and screen our family gene pool for several diseases and their inherited susceptibility. Guess what?  Mom was absolutely right about our family ancestry.  Interestingly, there was no evidence of early onset Parkinson’s in my extended family; thus, my disorder is the sporadic/idiopathic type of Parkinson’s.

“A mother’s love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path.” Agatha Christie

The 23andMe Parkinson’s research study: A few years ago, 23andMe decided to better understand the genetics of Parkinson’s disease; thus, the Parkinson’s research initiative.  Their goal is as follows: to understand the genetic associations found between Parkinson’s patients’ DNA and our disease; to take this new knowledge and search for a cure; and ultimately, they strive to enhance and speed-up how Parkinson’s disease is studied to better understand the genetics of the disease (click here to read further details) It’s easy to get involved in the 23andMe Parkinson’s research study, here are the eligibility requirements: (1) You have been diagnosed with Parkinson’s disease by a qualified physician; (2) You are willing to submit a saliva sample for DNA testing and complete online surveys related to your condition; (3) You have access to the internet; and (4) You are at least 18 years old.  The flow-chart below shows all one has to do to join this community of people-with-Parkinson’s helping out to search for a cure.
16.07.21.1
23andMe has an impressive group of  primary research partners and several other organizations as supporting partners, see below. To date, more than 10,000 people have agreed to be in 23andMe’s Parkinson’s Research Community, which makes it the world’s largest collective of genotyped Parkinson’s patients. Furthermore, many thousands of people without Parkinson’s have also consented to participate in these research studies.

16.07.21.2 “Research is to see what everybody else has seen, and to think what nobody else has thought.” Albert Szent-Gyorgyi

It’s a personal decision and choice, but it’s also advancing our knowledge of Parkinson’s:  If you have concerns, look over the 3 websites cited below.  The question is should you volunteer your DNA for the study?  Should you consent to have your DNA further sequenced?  And the nice thing about being involved is you don’t have to leave your home to participate; it’s an in-house study in that they mail you the tube/device, you spit into it, and mail it back to 23andMe.  Simple. Valuable. Straightforward. Elegant.  Contributing. Joining the Parkinson’s team.

7 Things You Should Know About The Future Of Your Genetic Data (click here)
23andMe DNA Test Review: It’s Right For Me But Is It Right for You? (click here)
DNATestingChoice.com (click here for a review of 23andMe)

Ponder it, think about it some more, possibly fill out the questionnaire, upload the information, you are now part of the Parkinson’s 23andMe team. Why should you participate? You will be providing your own small piece to the Parkinson’s genetic puzzle; help complete the assembly of the landscape to this amazing puzzle.

You will matter whether you participate or not; you will always matter.  However, congratulate yourself if you decide to join the team; the 23andMe Parkinson’s research study.  You can be part of the unraveling and the delineation of the genetic anomalies that cause Parkinson’s.

“It is ironic that in the same year we celebrate the 50th anniversary of the discovery of DNA, some would have us ban certain forms of DNA medical research. Restricting medical research has very real human consequences, measured in loss of life and tremendous suffering for patients and their families.” Michael J. Fox

Cover photo credit: http://www.hdwallpapersact.com/wp-content/uploads/2013/04/ summer-sunset-on-beach-hd.jpg

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Muhammad Ali (1942-2016): Parkinson’s and A Courageous Life Journey

“Don’t count the days; make the days count.” Muhammad Ali 

“God will not place a burden on a man’s shoulders knowing that he cannot carry it.” Muhammad Ali 

Brief Biography: On June 3, 2016, Muhammad Ali passed away due to respiratory complications from his advanced Parkinson’s Disease. He was born Cassius Clay in Louisville, Kentucky, in 1942. Muhammad Ali first became an Olympic gold medalist for boxing in 1960; next, the world heavyweight-boxing champion in 1964. Following his suspension for refusing the military draft to Vietnam, in the 1970’s, Ali reclaimed the heavyweight boxing title two more times.

Life with Parkinson’s: Muhammad Ali was diagnosed with early onset Parkinson’s in 1984; he was 42 years old. Following the diagnosis, Ali devoted much of his time to philanthropy. In 1997, Ali lent his name and helped to establish The Muhammad Ali Parkinson Center  (read about this impressive facility: https://www.barrowneuro.org/get-to-know-barrow/centers-programs/muhammad-ali-parkinson-center/ ). For all of his service to help others, Muhammad Ali received the Presidential Medal of Freedom in 2005.

In front of essentially the entire world in 1996, Muhammad Ali with very apparent symptoms of Parkinson’s, lit the flame at the Summer Olympics in Atlanta (click here to view this event). More recently in 2012, Ali was a bearer of the Olympic Flag during the opening ceremonies at the Summer Olympics in London. Ali had to be assisted to stand before the flag due to the advanced stage of his Parkinson’s.“Dr. Michael S. Okun, NPF’s National Medical Director, noted that Mr. Ali lived nearly half of his life with Parkinson’s, concluding ‘He was a force and an inspiration to all people with Parkinson’s and their families, and taught me a lot about how to live a hopeful and meaningful life with Parkinson’s disease.’” (http://parkinson.org/our-impact/press-room/press-releases/NPF-celebrates-life-of-Muhammad-Ali?_ga=1.125294986.1610237772.1459510190 )

A Courageous Life: As a boxer, Muhammad Ali was both inspiring and controversial. Muhammad Ali was possibly the most significant heavyweight boxing champion.

Most notably, I will always admire, respect and remember the grace and courage in which Muhammad Ali lived out his life with Parkinson’s . Ali’s brave actions in front of the world in the presence of his disorder were most memorable. His >30 years of life with Parkinson’s was a journey filled with hope and in service to others.

A very sad day in the passing of Muhammad Ali; he was a most remarkable person.

Here are a few indelible quotes from Muhammad Ali:
“He who is not courageous enough to take risks will accomplish nothing in life.”

“The best way to make your dreams come true is to wake up.”

“Impossible is just a big word thrown around by small men who find it easier to live in the world they’ve been given than to explore the power they have to change it. Impossible is not a fact. It’s an opinion. Impossible is not a declaration. It’s a dare. Impossible is potential. Impossible is temporary. Impossible is nothing.”

“What you’re thinking is what you’re becoming.”

“The man who views the world at 50 the same as he did at 20 has wasted 30 years of his life.”

“If my mind can conceive it, and my heart can believe it – then I can achieve it.”

“The Service you do for others is the rent you pay for your room here on Earth.”

“Go to College,
Stay in school,
If they can make penicillin out of moldy bread,
they can sure make something out of you.”

“All through my life, I have been tested. My will has been tested, my courage has been tested, my strength has been tested. Now my patience and endurance are being tested.”

Parkinson’s is my toughest fight. No, it doesn’t hurt. It’s hard to explain. I’m being tested to see if I’ll keep praying, to see if I’ll keep my faith. All great people are tested by God.”

Cover image credit: Getty Images/Andrew H. Walker

Side-by-side photographs credit: http://www.dailymail.co.uk/news/article-3626482/Raising-fists-final-time-Haunting-portrait-Muhammad-Ali-reveals-devastating-effects-Parkinson-s-boxing-legend-manages-smile-like-true-champion.html

Quotes/images credit: https://s-media-cache-ak0.pinimg.com/736x/b1/9a/45/b19a45aadef5beb5507d99ddf67309cc.jpg and https://s-media-cache-ak0.pinimg.com/736x/d0/4b/58/d04b584dad1b1067dd283e17f118a2f0.jpg and http://www.quote-coyote.com/album/small/Muhammad-Ali-Inspirational-Quotes.jpg