In this episode of When Life Gives You Parkinson’s, my wife and partner in Parkinson’s, Rebecca Gifford, and I explore the important role caretakers play in lives of people with Parkinson’s. We visit with people we met through season two to discuss the balance between being a spouse and a caregiver; we wrestle with what to call these important people and wonder why the medical and scientific communities do not listen to them more closely and tap them for real knowledge about living with Parkinson’s disease. Through the discussions, it has become clear to me that our partners are amazing people who care for us and prepare, as best they can, to deal with all of our unpredictable PD symptoms. And they also have responsibility to run the household, sometimes over small children and pets, and then their own self-care, their own interests and careers get whatever time is left over. Usually very little, if any time is ever leftover. Sure, we’ll travel while we can and set off on new adventures as COVID, money, and time allows. Life doesn’t end with a diagnosis. It changes. It constantly changes. As years roll on, these amazing people will bear witness to their partner’s silent suffering as Parkinson’s slowly traps the person they love inside a body that will no longer obey.  Each minute… Each day…  Each year... Parkinson’s tightens its grip. In my case, the disease has already begun to restrict my ability to be present at times and to empathize.  Slowly, this relentless, degenerative neurological brain disorder causes disorder in my brain. It steals my thoughts and my voice. In time, I know Rebecca will be there to support, care, challenge me and others, and advocate on our behalf. A writer by trade, she will find clarity and might in putting pen to paper, invoking the compassion of Quan Yin and just the right words to strike like lightning and reverberate like thunder.  There are millions of people like my wife who have untapped knowledge and a lived experience with Parkinsons that researchers and neurologists could leverage in making life better for people with Parkinson’s until that day when we find a way to end it. We should all demand to hear what they have to say. Immediately. We are all up against the clock. Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to: Tim & Sheryl Hague Check out their holistic Parkinson’s center at “U-Turn Parkinson’s” and follow Tim on Twitter and Instagram @TimHagueSr   Deana Grinnell Jimmy Choi – follow Jimmy on Twitter @JCThr33 and on Instagram @jcfoxninja  Gila Bronner – Director of Sex Therapy Services at Sheba Medical Center. Ellen Bookman – Ellen is very active in her PD boxing community www.pdboxing.org. Follow Ellen on Twitter @luvlivin3 Joe & Sarah Possenti and to my wife and partner in Parkinson’s Rebecca Gifford. Follow her on Twitter @RebeccaJGifford and on Instagram @loveandmud   Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation. Navigating Parkinson’s and COVID-19 Podcast: Check out the limited series podcast on COVID-19 and Parkinson’s that I am hosting with Dr. Rachel Dolhun for the Michael J. Fox Foundation. Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this episode of When Life Gives You Parkinson’s, I interviewed the founder of ESPN, Bill Rasmussen, who publicly announced his Parkinson’s in 2019. Bill was diagnosed six years ago, he is still active and still travels around the country giving talks to students and business leaders. At first, he says, he tried to hide his symptoms during his speeches. “My left hand is the one that has the biggest twitch, so to speak. I thought I'd keep it behind the podium or this or that, and after one event, they sent me a tape and I looked and that wasn't very effective. And so at that point, I said, "You know what? This is a fact of life. It's not anything to be embarrassed about. People catch cold, people break their leg, people knock their head up against a wall or whatever. And that's okay so why isn't Parkinson's okay?" The 87-year old takes medication each day, strives to keep operating at the same level as before his Parkinson’s diagnosis, and still wakes up each morning with a positive thought. As you might expect from the founder of ESPN, he has an analogy in regards to PD. He says,”The researchers are like the official scorekeepers up in the booth, but we are the players on the field. We’re walking through it every day. They can study my brain, but I have to use my brain. And they can study your brain, but you have to use your brain to get through each day. And those are the things that I think if we can convince people when you hear the word Parkinson's, you don't stop thinking, you don't stop living or any of those things. You adjust and keep on keeping on, as they say.” My interview with Bill Rasmussen is featured as part of limited series of podcasts produced by the Michael J Fox Foundation, co-hosted by Rachel Dolhun, and me. All the episodes can be found online at The Michael J Fox Foundation for Parkinson’s Research website. Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod

In this episode of When Life Gives You Parkinson's, I explore how the collision of health, technology and innovation in the private sector is revolutionizing approaches to measuring brain activity and treat brain related issues from Parkinson’s to major brain injuries and concussions. A major part of having Parkinson's disease is finding out what matches you in terms of diet, exercise, pharmaceuticals, therapies and relationships so you can manage your symptoms and maintain the best quality of life for as long as possible. But, are you aware of everything that's out there that you could be using? I wasn't. From hand-made, steel stationary bikes designed especially for people with Parkinson’s to a tongue stimulator to improve your balance and walking gait, I feel as if I’ve found a secret Bat-cave of cool, technology that I never knew existed. All of it comes with a price tag and insurance does not cover it. DISCLAIMER: I am not a spokesperson for these companies or products, they are not clients and have not paid for this placement. These products and services are part of my journey in exploring all the ways to live my best life with Parkinson’s. First, the stationary bike. It is called the Theracycle. Joe Possenti bought a Theracycle a year ago and uses it most days. He has had Parkinson’s for 12-years. He told me it’s a game-changer for him. The 200-pound, motorized cycle is designed to improve the lives of people with degenerative brain diseases and works by having assisted pedaling and handlebars that move like an elliptical machine and a the rowing machine. The most popular Theracycle costs $4,800 ($6,700 CAD), is delivered free in the continental United States and comes with a money-back guarantee. There is quite an operation underway in Surrey B.C. Recently, I toured The Health and Technology District, which is located across the street from Surrey Memorial Hospital. It is the brainchild of Dr. Ryan D’Arcy, a neuroscientist and entrepreneur. Dr. D’Arcy says there are 75 tech companies and 96 medical specialists integrated, collaborating and bumping into each other in one building alone. As I toured the facility, I realized I was not aware how many available treatments there are for the symptomatic issues of Parkinson’s. For instance, I saw two really cool therapies for treating gait issues so people can learn to walk normally again. The Lokomat, at NeuroMotion Physical Therapy, reminds me of Iron Man. Patients slip on these huge robotic legs strapped to a treadmill. Through forced and repeated motion, new neuropathways are created which retrains your brain’s communication to your legs and feet. The second treatment is called PoNS, which is short for Portable Neuro-modulation Stimulator.  This lightweight portable device slips around your neck rather snug and hanging off one end is a rectangle pad which goes into your mouth. It stimulates your tongue. Sonya Brody is a neuroscientist and the Vice President of services at the Surrey Neuroplasticity Clinic, and she told me we all have 12 cranial nerves that come off the back of our brain and two of them connect to the front, one-third of your tongue. One of the ongoing issues with treating Parkinson’s is the measurement tools for the disease progression and executive function are too subjective. Dr. D’Arcy created The NeuroCatch™ to take the guesswork out of measuring what is going on inside your head. It’s a six-minute test that measures auditory sensation, basic attention, and cognitive processing. Not only helpful with measuring brain function in people with Parkinson’s, but D’Arcy is working with hockey clubs to conduct the 6-minute test during games to determine if a player has a concussion or not. Another machine affectionately referred to as the “barf box,” measures balance. The NeuroCom® SMART Balance Master® measures how well your eyes, inner ear and muscles and joints are working together to maintain balance. The client stands in the center of a metal plate surrounded by three colourful walls. Through a series of short tests the plate moves, the walls tilt, and eyes are sometimes open and sometimes closed. During my tour, I tested both my brain function and my balance. My scores on both systems were less than impressive, which is no surprise. But, what is a surprise is that these treatments and tools exist and I was oblivious to them until now. It makes me wonder what else is out there and available to the Parkinson’s community. The different tests and treatments cost anywhere from $150 for one test on the NeuroCom® SMART Balance Master® or reportedly between $14,000 to $16, 000 for 14 weeks of treatments with the PoNS device. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons. Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Thank you to: The Health & Technology District Dr. Ryan D’Arcy, Neuroscientist and Co-Founder of the Health and Technology District Anne Shaw, Clinic Manager at Neuromotion Physiotherapy and Rehabilitation Sonia Brodie, Neuroscientist and VP of Services at the Surrey Neuroplasticity Clinic Matieu Gagnon, Kinesiologist at the Surrey Neuroplasticity Clinic Theracycle Rich Bloomenthal, Head of Sales at Theracyle Joe and Sarah Possenti Al Coen, Coen Communications; Cameraman, Video and Audio producer, Editor, big supporter of the pod, and all around great guy. and to my wife and partner in Parkinson’s Rebecca Gifford. Our presenting partner is Parkinson Canada. Its toll-free hotline is 1-800-565-3000. Follow Parkinson Canada on Twitter @ParkinsonCanada. Find the new Parkinson Clinical Guideline at www.parkinsonclinicalguideline.ca. Our content and promotional partners Parkinson’s IQ + You — A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD — The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. WPC2022 — Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this episode of When Life Gives You Parkinson’s, my wife and partner in Parkinson’s, Rebecca Gifford and I share how COVID-19 is affecting our family. From managing stress and PD symptoms to becoming accustomed to living well during a time of uncertainty, we are all learning many lessons. Here are five of the lessons that Rebecca and I have learned thus far: My Parkinson’s symptoms are less intense when I work from home compared to when I go to the office. This is a revelation that I probably would not have discovered without the pandemic forcing me to work remotely. I have already started discussing this with my company to figure out what my new reality could be when we are through the social distancing demands and most employees are encouraged to return to the office. Telemedicine is long overdue. I didn’t “go” to my last neurology check-up, I logged into it from my kitchen table. I feel like I had the full attention of my doctor and there we no interruptions for signatures, questions or updates on other patients from the nurses. It was just the doctor, Rebecca and me. If you live hours away from a neurologist or movement disorder specialist or just have difficulty getting from your home to anywhere, telemedicine makes a lot of sense. I hope it is here to stay. Connecting with community can be energizing, supportive and inspiring. From one on one FaceTime video calls with family and friends or group video chats with colleagues and social media “friends” who, until now, we had only met through tweets and Facebook posts. I’m grateful for the time, attention and community so many people have offered with an open heart and open mind. I also love that so many free exercise, yoga, and boxing classes are now being made available online to keep us active and exercising despite being cooped up inside. Managing Parkinson’s symptoms has better prepared people with PD and care partners for COVID-19. The uncertainty of Parkinson’s forces us to approach life minute by minute, hour by hour, and day by day. We make plans with the best of intentions and cancel them more often than we would like because a symptom flares up or exhaustion overwhelms us. Most people are not accustomed to have so much lack of control of their life. Many are resisting the isolation, are angry, frustrated, and are desperately grasping for control of something. The Parkinson’s community can be role models for others on how to let go and embrace what comes in each moment.   It is exciting to see how when the world decides to make something a priority, Government and regulatory red tape magically disappears and the finest minds of the world collaborate to solve a single issue. In this case, it is the race to creating a vaccination for COVID-19. Now that we know it is possible, I propose after COVID-19 is under control, we take this model and aim those global resources and all of that passion and urgency on to finding a cure for Parkinson’s… and then ALS, MS, Alzheimer’s and all the rest. In the podcast, we discuss these and many other lessons and observations COVID-19 has thrust upon us. Please take time to share what lessons, observations and coping mechanisms you have discovered during these unprecedented times by leaving a voice message here:  https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Jimmy Choi. Jimmy was diagnosed with Parkinson’s seventeen years ago. He ignored it for eight years. He took his pills every day, but he didn’t talk about it, he ignored it, he hid it and lied about it to friends and family. He was quite certain himself that the Parkinson’s diagnosis was probably wrong. “I convinced myself that one day I'm going to wake up and my doctor is going to tell me that, ‘Oh I'm sorry Mr. Choi, we made a mistake.” Jimmy continues his fantasy, “You actually have a tumor in your head. Once we remove it you're gonna be perfectly fine.’” Jimmy is stubborn. It takes a lot to change his position. But, Parkinson’s will not be ignored. Over the course of eight years, gradual changes happen on a daily basis. Insomnia, rigidity, and fatigue were all taking a toll on him. Parkinson’s disease pushed Jimmy to the edge. And he fell. “I was walking with a cane. I was no longer active. And as if things weren't bad enough, I was snapping at my family, screaming at my kids, and sitting around really not contributing to the daily activities of a household. I was walking down the stairs with my then 8 month old son Mason and we fell down the stairs.” His wife Cheryl and their daughter Karina watched in horror. At that moment, Jimmy made a decision that would change his life forever. He knew he was going to work hard to become the dad and husband his family deserved. He also began to participate in clinical research trials. It was during those trials, Jimmy realized exercise was a component of every trial he participated in and when he exercised he felt better. On his own, he began to take walks around the neighbourhood with his cane. And before too long, he was walking without it. His walk become a jog and his jog trained him for a 5k. Jimmy successfully transformed his stubborn resistance to Parkinson’s into determination, positivity and persistence in living an active, healthy life with the disease. In the past seven years, Jimmy has participated in over 100 half marathons, 15 full marathons, one ultra-marathon, six Grand Fondo rides, multiple Spartan Races and countless 5K and 10K runs. He became a high profile Parkinson’s advocate when he competed on American Ninja Warrior. Through his events, Jimmy has raised more than $250,000 for Parkinson's research. You don’t have to be Jimmy Choi when you’re exercising, but you can be Jimmy Choi in how you approach your Parkinson’s disease. He takes his PD one day, and sometimes one hour, at a time. His mantra is, “make today a little better than yesterday and make tomorrow a little bit better than today.”   Knowing Jimmy Choi is in the fight against Parkinson’s, makes today better yesterday already. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Follow Jimmy Choi on twitter and instagram Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with leaders of three Parkinson’s organizations about the never-ending hunt for a cure. The world has been five years away from a cure for Parkinson’s for the last thirty years or so. That sentiment is an update from when Tom Isaacs uttered a similar phrase in the early 2000’s. Isaacs had Parkinson’s and was a fierce advocate for those living with the disease. He co-founded Cure Parkinson’s Trust in England in 2005. Today, that organization’s Deputy CEO, Helen Matthews, continues to carry Tom’s torch. She says we are an awful lot closer to a cure than we were 15 years ago. However, “for there to be a game changer,” Matthews says, “Parkinson's needs to be a global health priority recognized by governments globally who are properly investing in this.” Matthews points to Australia, where the government has allocated $30 million over five years to identify disease-modifying drugs to slow the progression of Parkinson’s. “You know, we need further injections of cash here in the UK. We need further injections of cash in Canada. We need consortiums working in all territories. You know, North America really investing and making sure that Parkinson's is a health priority.” Of note, Parkinson Canada has requested $30 million over five years from the Federal Government to establish the Canadian Open Parkinson’s Network. C-OPN would be a shared, open data platform with the goal to accelerate breakthroughs, improve patient outcomes, increase clinical trial involvement, and ultimately find a cure for this life-limiting disease. It would establish Canada as another leading country in the global commitment to ending Parkinson’s disease. The 2020 Federal Budget was to be unveiled on March 15th, but has been indefinitely delayed due to COVID-19.   Marking 20 years in operation and having invested one billion dollars in Parkinson’s research dollars, The Michael J. Fox Foundation has learned a thing or two over the past two decades. Deputy CEO Sohini Chowdhury is grateful they have raised such a mind-blowing amount of money for research, but is careful to keep it in perspective. “When you think about drug development in general, “ Chowdhury says, “the numbers that are often cited or that it takes anywhere between 12 and 15 years to get a drug moving through the development process and into patients hands and that it can cost upwards of a billion dollars that entire process.”  At Parkinson’s UK, Chief Executive Steve Ford and his team have committed 8 million pounds equivalent to more than 14 million Canadian dollars for Parkinson’s research each year. Ford also has helped to establish The Critical Path for Parkinson's. “We've brought together foundations from around the world. The Fox Foundation and the Parkinson's Foundation are involved in this. Ten or eleven global pharmaceutical companies are involved as well.” Ford continues, “And what this is doing is bringing everybody together, sharing data, drug company data, clinical trial data, and the kind of data that some researchers all around the world have from following patients up over a number of years.” All that information is used to shape the future of clinical trials and to work with the regulators to get that kind of approved.” With this approach, individual companies do not have to go and get their own kind of trial design approved by the regulator and spend millions of pounds dollars doing that. The Critical Path for Parkinson’s consortium can do that on behalf of the whole industry, which dramatically reduces the costs of designing new research studies. As more than ten million people with Parkinson’s in the world await the evasive cure, we hold on to hope and Tom Isaac’s believe that a cure is possible. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Helen Matthews, Deputy CEO, Cure Parkinson’s Trust – Follow CPT on twitter @CureParkinsonsT Steve Ford, Chief Executive, Parkinson’s UK – Follow PUK on twitter @parkinsonsuk Sohini Chowdery, Deputy CEO, Michael J. Fox Foundation for Parkinson’s Research – Follow MJFF on Twitter @michaeljfox.org Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Heather Kennedy. Heather, recently named an Ambassador to the World Parkinson Congress 2022, is a fierce Parkinson’s advocate from San Francisco. Heather tackles some tough topics; being a woman with PD, dating with bladder urgency, and depression. “Depression? It’s tricky,” she says. “It creeps up, it lies to you, it tells you that you’re nothing, that you’re useless, and that there are millions and billions of people and you don’t matter.” Heather’s action plan for emerging from the darkness includes volunteering and making small positive gestures to people in her community. It gives her something to cling to when the blanket of depression envelops her, “When depression tries to get me, I think ‘hey, people might be depending on me. I’m going to get up for them.’”  The former film and photography production assistant shares her journey online through her alter-ego Kathleen Kiddo, a pen name and a license to be a raw, real and revealing. “I’ve always kept a journal and I love it. It’s a way to clarify and share with the world. It’s a little window to these stories, miraculous stories  – some of which I don’t even know where they come from. They don’t even belong to me.” When you read her social media posts and blog or watch her videos, you quickly realize Heather is funny, bright, sarcastic, creative, inspiring and always finding new, amazing ways to share her Parkinson’s story. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Links we mentioned and source material for the show: Kathleen Kiddo – www.KathleenKiddo.com, on Twitter, on Facebook and Instagram The Inner Sanctum episode featuring the murderous character “Larry Gifford” is from May 15, 1945.It’s called The Black Arthttps://www.speakingofradio.com/interviews/brown-himan-producer-director/ Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Heather Kennedy aka Kathleen Kiddo. Follow her! www.KathleenKiddo.com, Disney Pixar’s Inside Out CBS Mystery Theater, The Creaking Door Inner Sanctum Radio The estate Himan Brown Speaking of Radio.com Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this special Parkinson’s Awareness Month episode of When Life Gives You Parkinson’s, I chat with Dave Clark. Dave is a television presenter for SKY TV Sports from Leeds, England. He’s best known for anchoring darts and boxing coverage. His positivity is infectious. He was diagnosed with Parkinson’s in early 2011, but nearly a decade on he’s still broadcasting, has a great attitude, is raising tons of money and attention for the cause. Later this year, he will walk the length of Hadrian's Wall and climb Mount Everest to the base camp at 17,000ft, to raise funds for Parkinson's UK. He has already generated £500,000 towards the charity's work. He also recently announced he will be donating his brain to medical science – to help find a cure for Parkinson’s. During this conversation, we discuss what it was like to tell our bosses about our Parkinson’s, what it was like to meet The Boss (Bruce Springsteen) and why covering Muhammad Ali at the Atlanta Olympics back memories of his father. Dave and I also chat about how social media can be a blessing and curse, commiserate on the anxiety we feel as passengers in a car, and how frustrating it is that people still confuse our symptoms for intoxication. Dave also shared the follow advice for people newly diagnosed with Parkinson’s. He shares this with anyone who contacts him and ask for guidance. How to live a happy life with Parkinson’s by Dave Clark Live in the now. Try not to look too far in the future. Always have something in the diary that excites you. If music makes you happy, don’t live in a silent house where you can brood. Dance, even if you haven’t danced for years. Keep busy, but don’t feel guilty about having the odd sofa day. Stay sociable. If your friends don’t ring you, ring them and arrange to see them on a regular basis. Get up. Dress up. Show up. Never give up. Say YES to invitations, even if you’re feeling rubbish. Exercise makes you feel good, even if you can only manage to get to the corner shop – do it! Stretch every morning. Eat well. Try not to skip meals when you’re shaky. Food is brain fuel. Water makes up about 73-percent of the human brain and helps to make hormones and neurotransmitters. Talk to other people with Parkinson’s online. It’s a really supportive community. Their experience can help your experience. Build a support team around you with people you can trust: friends, neighbours, physio therapist, neurologist, pharmacist, etc. This is “Team YOU.” Only tell people about your Parkinson’s when you are ready. Other people’s grief about your diagnosis can be as hard to deal with and process as the diagnosis itself. Remember, people with Parkinson’s can do amazing things. Do something amazing. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Links we mentioned and source material for the show: Sky TV feature article on Dave’s Parkinson’s and his goal to climb to Everest base camp in 2020 Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Dave Clark. Follow Dave on twitter @DaveClarkTV Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families

In this episode of When Life Gives You Parkinson’s, I talk with Professor of Neurology Ray Dorsey, MD from University of Rochester and the CEO of the Michael J. Fox Foundation Todd Sherer, PhD. These are two of the fourth authors behind a new book called, “Ending Parkinson’s Disease, a prescription for action.” Dorsey, Sherer and co-authors Michael S. Okun, MD at University of Florida and Bastiaan Bloem, MD, PhD of the Netherlands, each approach Parkinson’s disease from a specific point of view. Dorsey is a telehealth and home healthcare advocate who has been using technology to see patients remotely for more than a decade. He directs the Center for Health and Technology, which offers free care to anyone in New York that has Parkinson’s disease. His mission is to offer to anyone, anywhere. Sherer is neuroscientists who was part of a team that found the link between pesticides and Parkinson’s. Okun is a pioneer of surgical treatments for Parkinson’s. Bloem is co-creator of ParkinsonNet, the world’s largest integrated care program for Parkinson’s disease which is customize and individualized networked treatment which can include nutritional advice, physical therapy, occupational therapy, speech therapy, exercise, clever IT, community and hope. Their book clearly portrays Parkinson’s disease as a formidable antagonist. They describe Parkinson’s as a “man-made pandemic,” which thrives today, doubling the rate of diagnosis every 25 years, with no known cure and not enough urgency to slow the spread. The authors point to research which suggests Parkinson’s disease was fueled initially by the industrial revolution and continues to be diagnosed at a rate greater than the rates of aging or population growth due to pesticides that attack the nervous systems of bugs (and people), solvents, contaminated well water, and head trauma. The authors conclude Parkinson’s disease may be man-made. However, just as humans contributed to the rise of Parkinson’s in the nineteenth and twentieth centuries, we can now work together to eradicate the disease. Readers are called to action by focusing on prevention, advocacy, care and treatment. The book concludes with a list of twenty-five concrete steps we can and should take to reduce the worldwide toll of this disease. The list includes banning specific pesticides and solvents, and cleaning up contaminated sites, which will all take vigorously lobbying to the governments of many countries. But there are things they suggest you can do today to reduce your risk of getting Parkinson’s: use a water filter, eat a Mediterranean diet, vigorously exercise for four hours a week, get involved with research, and if you already have Parkinson’s – be loud and share your story. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Links we mentioned and source material for the show: Ending Parkinson’s Disease book official website Parkinson’s Disease Care New York  – Free Care for New Yorker’s with Parkinson’s disease Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Ray Dorsey, MD – following him on Twitter @RayDorseyNeuro Todd Sherer, PhD, CEO of the Michael J. Fox Foundation Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.  

In this episode of When Life Gives You Parkinson’s, despite some setbacks there is still an appetite to trial a treatment for Parkinson’s that many believe is the antidote. GDNF or Glial cell line derived neurotrophic factor are naturally occurring and are vital for normal functioning of the brain.But, when GDNF is delivered directly to the brain, for some people, it is as if they’ve never had Parkinson’s. The phase II GDNF trial at University of Bristol, seemingly, was made possible through the sheer will and force of the late Parkinson’s advocate Tom Isaacs and his Cure Parkinson’s Trust. The broadcast of Tom’s BBC Radio 4 documentary, “Chasing a Cure,” about the treatment, was heard by Vicky Dillon. She vowed if it ever came around again she’d sign up. And she did. “We were the guinea pigs basically to see if we would tolerate the surgery and the insertion of all this plumbing in our brains,” she said. “They cut me from my hair line to like the middle part of my head and then put in all four catheters that went deep into the into my brain. And then you had another bit of plumbing that run down the side of your head to a port behind you left ear, which is where the infusions were given. So, there was quite a lot of stuff in there.” Vicky was given GDNF for the better part of two years. Her symptoms improved almost immediately, “By the time I took the second infusion, I noticeably felt different. I remember waking up a couple of days afterwards and there was no Parkinson symptoms for about an hour or so. I thought, ‘oh my God!’. And gradually everything started getting better.” Vicky’s symptom improved 63% and all the participants showed cell regeneration on PET scans, but the trail did not meet its primary end point. “That’s ridiculous,” says Jayne Calder. Her husband Darren was also in the trial and it improved his symptoms more than 50%. “Without any doubt whatsoever in 100 percent of those participants minds we have got the cure for Parkinson's.”  Vicky and Jayne are leading the charge to raise awareness and money for another trial. They have been very vocal. They’ve even recorded a song called “Shine” by the G.D.N.F.ers. Each download includes a donation to another GDNF trial. They have also caught the attention of Parkinson UK. The organization’s chief executive Steve Ford is ready to throw massive amounts of money towards the project if everything on the application looks right. “We spend around eight and a half million pounds annually. That's eleven or twelve million dollars a year on research. We haven't seen the application yet, but we envisage it's going to be in the order of an annual spend on research. So, that's not significant more than we've ever spent before.” Recruiting for the next GDNF trial is expected to begin by the end of 2020 or just after the first of the year 2021. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Links we mentioned and source material for the show: U.S. TRIAL |Phase 1 trial of GDNF is slated for 2022 will test viral vectors for delivering GDNF in escalating doses. RADIO DOCUMENTARY | BBC Radio 4 “Chasing a Cure” with Tom Isaacs WEBSITE | ScienceofParkinsons.com FUNDRAISER | Raise a Million for GDNF by Darren & Jayne Calder FUNDRAISER | “Shine” performed by GDNFers and written by Vicky DIllon EDITORIAL | Where Are We One Year On by Steve Ford, Parkinson UK Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Vicky Dillon Darren & Jayne Calder Steve Ford, Parkinson U.K. Helen Matthews, Cure Parkinson’s Trust BBC Radio 4 Passionate Productions for BBC Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families

From prayers and real promise to being preyed upon, this is the real deal about stem cell therapy and Parkinson’s disease. In this episode we explore stem cell therapy for Parkinson’s disease. The promise of stem cells is exciting and there's amazing research underway. Later this year, the first U.S. human trials for stem cell therapy for Parkinson’s will begin in New York. This could open up a potential path for new treatments and Dr. Lorenz Studer has spent the last 22 years perfecting the treatment. In 1998, in Studer’s lab, the neuroscientist and founder of the Center for Stem Cell Biology at Memorial Sloane Kettering discovered a successful technique to transform animal cells into dopamine cells. They could transplant them into the brain and measure positive impacts on motor symptoms of Parkinson’s disease in rat models. Studer remembers it as an eureka moment, and it took from 1998 to 2011 for his team to discover the recipe for the human dopamine cells and they have now grown one billion of them. They are stored in vats filled with liquid nitrogen and have been safety tested hundreds of times. Now, nearly ten years after perfecting the recipe, people with Parkinson’s will put these cells to the test and hopefully taste the sweet success of stem cell replacement therapy. While Studer’s stem cell therapy is at least five years away, there are some companies claiming they can help Parkinson’s and other diseases with existing stem cell treatments. Science and Health journalist Laura Beil highlighted some of these organizations in her six part investigative podcast “Bad Batch” by Wondery. The podcast explores a real life story of what happened when a bad batch of cells were distributed and injected into people in Texas. She empathizes with the victims, as she recalls she would’ve done anything to help her father who had Parkinson’s.  Dr. Studer has also heard these stories and recommends you consult with a doctor before seeking any treatments. He cautions some companies looking to make a quick buck actually take fat cells out of the body and re-inject them into your body, while claiming they can cure your disease. The only FDA approved stem cell treatment is for blood diseases. Please comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Thank you to my wife and partner in Parkinson’s Rebecca Gifford. Also, thank you to the following contributors and guests. Laura Biel, host of the Bad Batch podcast from Wondery Brian Fiske, SVP of Research Programs at The Michael J. Fox Foundation Lorenz Studer, MD Director of Center for Stem Cell Biology at Memorial Sloan Kettering Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.  WPC2022- Save the date for the sixth World Parkinson Congress, June 7 to 10, 2022 in Barcelona, Spain in 2022. The only inclusive scientific conference opens its doors to people with Parkinson’s and families.   Links we mentioned and source material for the show: Bad Batch podcast Fox Trial Finder International Society of Stem Cell Research ClinicalTrials.gov  ARTICLE: Canadian man growing nose cells on spine after stem cell treatment 20 years ago. ARTICLE: Reprogrammed stem cells implanted into patient with Parkinson’s disease.ABSTRACT: 1998; Dr. Studer’s research on creating dopamine brain cells that help relieve Parkinson symptoms in rats. ABSTRACT: The 2011 report Dr. Studer and his team published on the recipe to make dopamine cells for humans.ABSTRACT: 2020 UPDATE on the Kyoto Stem Cell Project.   VIDEO: (2:21) Dr. Alan Gaveck shares a testimonial claiming stem cell therapy helped a woman’s Parkinson’s disease.

This week on the podcast, we’re talking about writing as a life skill. Learning to access your own inherent creativity can be a powerful tool for any of us dealing with challenge and change. For folks with Parkinson’s in their lives, it can offer both physical and emotional benefits. Science agrees! Studies and reputable sources tell us that writing and other forms of creative expression can reduce stress, help with sleep, improve cognition, improve your mood, help manage symptoms of depression, lower blood pressure, improve lung and liver functioning and decrease time spent in the hospital. Beyond the more measurable benefits, I believe — because I’ve experienced it and seen it over and over — that learning to access that beautiful creative space we all have can bring balance and even peace when you’re feeling overwhelmed. It can help us change our relationship with Parkinson’s Disease, or any of life’s challenges, by giving us a safe and healthy place to express our feelings and thoughts, explore our inner life, find perspective and guide us toward a way to move through those dark times. Often, acknowledging what you’re experiencing by simply writing it down is a critical first step towards healing. If we take it to the next level, there are even more benefits to be found. When we are courageous enough to share our expressions, we all benefit. Stories bind us. They reveal our shared humanity through humour, drama and vulnerability. Writing about our worst and best moments and everything in between can light the way and inspire others dealing with pain or adversity...which is all of us, really. Offering glimpses into our inner lives gives us in the Parkinson’s community an opportunity to support and strengthen each other. However you choose, express yourself! If you feel compelled, share it with others. No matter what, it’s good for you and time well spent. Who knows? Writing those first few words can be a step on a new path towards greater wellness. —- This week’s show notes were contributed by Rebecca Gifford, writer, workshop facilitator, partner in Parkinson’s to this podcast’s creator and host Larry Gifford, and this episode’s co-host. Her memoir, Cancer Happens: Coming of Age with Cancer, was published by Capital Books in 2003. She currently offers her writing workshop for non-writers to people with Parkinson’s and their families through the Parkinson Society of British Columbia. Feel free to comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons   Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod   Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer   Thank you to our special co-host this week, Rebecca Gifford.   Also, thank you to the following contributors and guests. David Sangster, follow his “micro-blogging” on twitter @1in37Parkinsonsand his videos on YouTube  Sharon Krischer, follower her blog “Twitchy Woman” Jonny Acheson, follow him on twitter @pdinfocus Allan Cole, follow his blog “PD WISE” Matt Eagles is the creator of ParkyLife Ellen Bookman, follow her blog “Loving Living” Heather Kennedy, follow her blog “Kathleen Kiddo” Ava Butler, author of “Parkinson’s; A Love Story With Dementia For Dessert” Steven Ward Martino Costa Christie Daniels   Additional Resources for Parkinson’s Writing: The Michael J. Fox Foundation Blog “Fox Feed”and a list of additional books and resources Parkinson’s Life “Eight must-read books about Parkinson’s.” “Perserverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined”by Tim Hague Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca   Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD– The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.    Credits Dila Velazquez – Story Producer Rob Johnston – Sound Design

What are the different possible triggers for how people get Parkinson’s? Find out in this episode as I try to narrow down how the degenerative brain disorder was unleashed on me. After Niki and I chat about the “how,” my wife ,Rebecca and I begin to explore the “why?” If you have Parkinson’s, you may want to play along at home while you listen. Here’s a handy check list to see what factors potentially triggered your onset of PD. Check ALL that apply: I am male. I am older than 60 years old. I have parents or siblings who have Parkinson’s disease. Genetic tests show I carry a gene that is associated with the onset of Parkinson’s disease. Genetic tests show I carry a gene that is associated with brain degeneration. I play or played a high contact sport (Football, Hockey, Rugby, Boxing, Martial Arts) I have played or played high contact sports for more than eight years. I have experienced several concussions. I live or have lived near a major, busy road. I have worked or lived near a chemical plant. I have suffered Agent Orange exposure. I have been exposed, over a long period time or at extremely high levels to pesticides. I have been described as a workaholic, a Type-A personality, or stressed-out. I do not exercise. I have had a stroke. I have injected the MPTP strain of synthetic Heroin and suffered spontaneous Parkinson’s. I was born with damaged dopamine-producing brain cells. I died. During my autopsy, Alpha-Synuclein was discovered clumping in my brain (Lewy Bodies). I did not realize how much I was asking myself, “What did I do to get Parkinson’s?” until I started putting together this episode. The recent study by Cedars-Sinai Hospital in California that we discuss at the end of the episode was a real revelation for me. It suggests that people with Young Onset Parkinson’s may be born with malfunctioning dopamine producing brain cells, which leads to the clumping of the protein Alpha-Synulcein (Lewy bodies) and ultimately leads to the onset of Parkinson’s disease. In the episode, we hear from many qualified professionals about different reasons how Parkinson’s onsets. Sohini Dhowdhury, Deputy CEO of The Michael J. Fox Foundation, discusses why she is so interested in Alpha Synuclein research. “We know it’s the hallmark of Parkinson’s. Research and therapies targeting this protein gets to the root biological process,” Chowdhury said.   At UCLA, Dr. Jeff Bronstein, the head of the movement disorder clinic there and Dr Beata Ritz, professor of epidemiology at Fielding School of Public Health, collaborate on environmental factors that could trigger the onset of PD, like pesticides, both for the home and industrial use. Dr. Ritz has little doubt when she speaks on this topic, “Some pesticides are neurotoxic in a way that causes Parkinson’s disease when you are exposed over a very long time or very high levels.” In the episode, we examine the herbicide Paraquat, which is banned in many countries around the world, yet remains one of the most widely used chemicals to protect crops. There are many ways people can trigger Parkinson’s and many reasons why someone is diagnosed with it. Dr. Bronstein believes every case is unique, “I think of it as a humungous Venn diagram in which there and many, many different factors.” In the end, how I got Parkinson’s may not matter to anyone else, but me. But, for me, I’d be more comfortable knowing it was hibernating within me until I was ready for it, instead of me doing something to unnaturally cause it. In reality, I’ll likely never know what combination of things unlocked this disease. On the flip side, it’s brought me as much joy, friendship, perspective, and purpose in life  – and maybe more – than any one thing in my life. Feel free to comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to our special guests:  Dr. Jeff Bronstein, Head of the Movement Disorder Clinic at UCLA Dr. Beata Ritz, professor of Epidemiology at Fielding School of Public Health, Dr. Malu Tansey, Director, Center for Translation Research in Neurodegenerative Disease Dr. Matt Farrer, Program Director, Nuerology & Movement Disorders at University of Florida Michael Brauer, professor, UBC school of population and public health Sohini Chowdhury, Deputy CEO of The Michael J. Fox Foundation Marty Gifford Rebecca Gifford The book referred to in the podcast was “The Case of the Frozen Addicts.” Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

In this episode of When Life Gives You Parkinson’s, I talk with filmmaker Zack Grant, the driving force behind the Parkinson’s documentary, “Shake with Me.” The thirty-minute film was originally intended to document how Parkinson’s impacted and inspired Zack’s mom, Debra Magid, to return to her fine art roots and begin to paint bold, colorful, big-eyed, portraits. It turned into an intimate, authentic time capsule, capturing moments and conversations as a family wrestles with a Parkinson’s diagnosis. Debra was diagnosed in 2012. She decided to keep the Parkinson’s a secret from her kids. Debra explains her decision in the film, noting Zack was already out of the house, but his sister Elizabeth was still living at home. Debra said, “I was afraid if she thought I was sick that she wouldn’t even go to college. That she wouldn’t launch.” About a year later, Elizabeth found her Mom’s medication hidden in a drawer and that secret was out. The other secret Debra was keeping was that the Parkinson’s was motivating her to paint again. As a college student, she was an aspiring product designer and had a passion for fine air. Her diagnosis triggered that passion again. “What I’ve been doing is drawing faces, interpreting what the face is, and what I see in it. Kinda of telling a bit of a story.” Debra continues, “I do feel lucky to have found such a strong voice this late in life. I think Parkinson’s is like a little bird sitting on your shoulder going, ‘tick-tock, tick-tock.’ Time is going and don’t waste what you have.” After explaining the diagnosis to her family, it would be several more years until Debra was comfortable sharing the Parkinson’s diagnosis with everyone in her life and eventually everyone in the world through Zack’s film. “The film was supposed to be this very small piece about the juxtaposition of her art, her diagnosis and her changing health,” said Zack. At some point, he says the family realized it was much more than that, “There was this desire to have these conversations about how Parkinson’s has affected our family.” The film touches on advancing symptoms, decisions to take more and different drugs, the struggle of who to tell, when to tell them and how Parkinson’s impacts everyone in the family, not just the individual diagnosed. Today, Zack, Debra and the family are more open and honest with each other, because of the experiences they shared in making film. For Zack, the film has refocused his career, “I think this film was a really ambitious way of trying to get in touch with my feelings around Parkinson’s. Now I am in this place artistically where I want to do more personal stories. And in fact, I don’t want to touch anything that I can’t find a personal way in to.” The film “Shake with Me,” is available for small group screenings, film festivals and for free download on Vimeo.  Feel free to comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to our special guests:  Zack Grant, Debra’s son and filmmaker. This is the official website for shakewithmefilm.com View his film “Shake with Me” for free on vimeo. Check out his other work at zackgrant dot com. Debra Magid, for sharing her Parkinson’s story and her art. Check out her website www.DebraMagid.com . Jim Grant, Debra’s husband Elizabeth Grant, Debra’s Daughter Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.   

I will introduce you to Jeanette and Barry Pynn. They are friends of Rebecca and mine that just went through a gut-wrenching couple of years dealing with a misdiagnosis. Jeanette was a runner for her whole life. After decades of raising kids, a great marriage, and dreams of traveling and enjoying the final decades of life together, Jeanette’s gait changed. “I couldn’t flatten my foot out during a run,” she says. Doctors treated her foot issues for years through orthotics and creams. Three years later, the whole left side of her body shutdown after jumping into the Adriatic Sea. Something was definitely wrong. After months of tests, Jeanette received a diagnosis in the Parkinsonian family that she was not expecting: Multiple System Atrophy, also known as MSA. It carries similar symptoms to Parkinson’s but is more aggressive, has a quicker progression and is deadly. The Mayo Clinic reports people with MSA typically live seven to ten years after symptom onset. This is an important fact that Jeanette and Barry did not know and a vital detail that her neurologist failed to mention. Barry remembers leaving the appointment somewhat encouraged, “When we heard that it might be a relative of Parkinson's, it was actually it was a relief.”  That relief quickly gave way to fear, when Jeanette was waiting for her new prescriptions at Costco surfing the internet, “I was reading up on the disease and I looked over at Barry and I said, I don't think this is very good. And he said, In what way? And I said, I think you better read this because I can't I can't really explain it to you.” After two years of wrestling with the diagnosis, the disease, and her own impending death, Jeanette and Barry reached out for help. They were in search of support, community, information, context and understanding. Rebecca and I met Barry in the Spring of 2019 at the annual meeting for the Parkinson Society of British Columbia. They were listeners to the podcast and had traveled from Bowen Island, because they read we would be at the event and they wanted to connect. We chatted, they shared their story, and soon we discovered we got along. We became fast friends. And in the back of our heads, we understood we were entering into a friendship with Jeanette, at least, was a proposition that wouldn’t likely survive the next decade. Rebecca’s cell phone rang on a Saturday morning in September last year. It was Jeanette. She had seen a new neurologist, a movement disorder specialist, at the UBC Brain Centre. “She said that it's most likely certain that I have Parkinson's disease and not MSA.” Jeanette continued through tears, “Whoever thought they'd be so happy to have Parkinson’s?” The misdiagnosis of MSA is certainly not rare. A 2015 study featured on Neurology.org examined 134 autopsied brains of people who were clinically diagnosed MSA while living and only 63% had the correct diagnosis at death. As it relates to Parkinson’s disease, a new Parkinson’s UK study shows 25% of people with Parkinson’s are misdiagnosed. A third of those were given medication for an illness they didn’t have and a 10% underwent a needless operation or procedure. Misdiagnosis is likely to continue until researchers discover reliable biomarkers to aid in the diagnosis of Parkinson’s and related disease. Feel free to comment by leaving us a voice message here: https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to our special guests:  Jeanette Fisher Pynn Barry Pynn Wendy Edey, Facilitor of Hope at “Hope Studies Central” https://sites.google.com/a/ualberta.ca/hope-studies/home Dr. Jonathon Squires at Djavad Mowafaghian Centre for Brain Health Dr. Stuart Factor, Director of Movement Disorders Program at Emory University School of Medicine. Rebeca Gifford Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Follow them on Twitter @ParkinsonCanada Find the new Parkinson Clinical Guideline www.parkinsonclinicalguideline.ca Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

In this episode of When Life Gives You Parkinson’s, we explored the Parkinson’s legacy of Muhammad Ali. He was a boxer, a philanthropist, a Civil Rights leader, a dedicated Muslim and an advocate for Parkinson’s. In retracing the onset of Ali’s Parkinson’s disease, it is evident he was aware, his doctor was aware and the public was aware that something was happening even as his boxing career was continuing on. The slowness, rigidity, and slurred speech all can be traced back to the mid-70s. Ali’s physician and corner man Dr. Ferdie Pacheco noticed the champ was slipping neurologically in 1977 and resigned after Ali, his wife and trainers ignored his concerns of brain damage which he warned could lead to Parkinson’s. Looking back at Ali in the ring and on talk show interviews from that year through his diagnosis in 1984, you can hear his voice change and his movements slow down. This is how he described what it felt like to him on The Dick Cavett Show, “You see what you wanna do. I should really hit you. Right? And then, I throw one and it lands right there. I miss you. And you see punches coming and you can get away quick enough…” In an interview with the When Life Gives You Parkinson’s podcast, Muhammad Ali’s daughter Rasheda Ali Walsh, shares that the journey for diagnosis for her Dad was not much different from most. “I was told that a lot of doctors misdiagnosed him because he was so young and a lot of people thought he was just kind of remnants from the boxing career,” she said. Ali’s first symptom was a tremor in his thumb, he started to move slower and then after that his voice softened and speech began to slur. Rasheda says accepting the diagnosis also was not easy for her Dad, “My dad felt that everything happens for a reason and I know how cliche that may sound. But he was, of course, distraught when he was diagnosed.” Rasheda says he shied away from public speaking in the 80’s when his voice started to be impacted by the disease. “You know, his mouth was something that made him a lot of money and made him dynamic. And, you know, when he started to speak a little softer, he got a little insecure about speaking,” she said. Ali eventually accepted his diagnosis and his attitude went from insecure to realizing he need to grab a hold of it full force to see what he could do with it to help change the world. There is something comforting to hear about the struggles Muhammad Ali had in acknowledging initial symptoms, getting diagnosed, accepting the diagnosis, figuring out who to tell and when tell them, and even wrestling with the concept of when to stop working. These are issues and decisions we all share with “The Greatest.” Either Ali was cut down to be seen as human or we all have been lifted up and are doing a whole lot better than we think. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer If you want more information on the studies around pugilistic Parkinson’s you can find the information in the Journal of Neuropathology and Experimental Neurology through an article titled “Lewy Body Pathology and Chronic Traumatic Encephalopathy Associated With Contact Sports Thank you to… NBC’s Tonight with Jack Parr  1963 BBC’s “Parkinson” with Michael Parkinson, 1978 BBC Documentary “One Punch Too Many” David Letterman, World Wide Pants 1984 Phil Donahue, Multimedia Inc., 1990 Diane Sawyer, ABC News NBC’s Today Show, NBC News, Matt Lauer and Savannah Guthrie HBO Sports, “Inside Sports” and Bryant Gumble   And thank you to our special guests:    Rasheda Ali Walsh – Rasheda is the Author of “I’ll hold your hand so you don’t fall,” It’s available on her website www.RashedaAli.net. She served as Honorary Chairperson for the Florida Coalition To Cure Parkinson’s Disease. She serves as Patron for the EPDA, the Muhammad Ali Parkinson’s Center at Barrow Neurological Institute, and serves as Advisory Board Member of BrainStorm Cell Therapeutics, a leading Biotech company.   Dave Clark, sports presenter on Sky Sports News   Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter @ParkinsonCanada   Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.    Credits Dila Velazquez – Story Producer Rob Johnston – Sound Design  

Hey folks, its Larry. We need to chat. A few Thursday’s ago, I was sitting in my office having a meeting and suddenly my nose begins to bleed. Weird. I grab some tissues. I’ve had bloody noses before and they stop in a few minutes. This was a gusher and it wasn’t stopping. 40 minutes into the bloody nose we called 9-1-1. Medics came, put a plastic clamp on my nose and took me to St. Paul’s Hospital. After a few hours the bleeding stopped. The ER doc asked a few questions and sent me home. I had 10 nose bleeds over the course of the next 4 days, but continued working through my packed schedule. I flew to Toronto for meetings the Monday after. I had three nose bleeds that day. Tuesday, during a meeting I had one and then as we were wrapping up dinner I had another. I had kept my nose clamp from the ambulance ride, so I was expert at dealing with it. At dinner, I said folks, “It’s time for me to leave. As you can see I have a stylish nose clamp, which means my nose is bleeding and it is time for me to catch an Uber.” A colleague of mine, Mike, rode with me. We were at the same hotel. He said, “I’m right upstairs if you need me.” I said thanks and assured him I was fine. I wasn’t fine. 10 minutes later I send him an email no one wants to get, the subject line read, “Help 911.” Within those 10 minutes, the blood had begun to gush out both nostrils through the clamp and I started to cough, choke and gag on it. I could hardly catch my breath. I dialed 9-1-1. After they confirmed an ambulance was on its way, I called my wife Rebecca in tears, choking on my on blood, in full panic attack mode I told her I loved her. My colleague Mike arrived a minute later. Rebecca and Mike exchanged information. Mike kept her in the loop the whole night. He rode in the ambulance with me to St. Michael’s Hospital. Meanwhile, I’m still bleeding, still coughing up blood and spitting out big clots. It was gross. The doctor sprayed some anti-decongestion in my nostrils to help close the blood vessels. She then shoved a big wad of gauze up my nose with numbing and clotting medication. It took three or four hours for the bleeding to stop. I stayed in Toronto for two extra days, resting in a hotel, nursing my continuing bloody nose. I emailed my neurologist who said; A) It’s not Parkinson’s related. B) It’s not Parkinson’s medication related. C) Get off the aspirin. At some point, I was told it was a good idea to take a low dose aspirin once a day to prevent stroke and heart attack. After seeing my GP, she said, “Yeah, were not recommending that anymore.” Getting off the aspirin and out of the sky was the key to controlling the nose bleeds. I had been on 13 roundtrip flights in 16 weeks. Too much recycled air will dry out your nose. The aspirin counter-acted the blood platelets clotting ability. Both my GP and Neurologist have also suggested I need to slow down. So, I’m slowing down. I am peeling back commitments and travel. I’ll still do some, but not as much. I need to say no more, know my limits, and admit out loud that I can’t do everything. It starts with the podcast. Effective in December, we will release a new podcast every other week. We’ll take two weeks off at the end of the year and be back on January 8th. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to…   Rebecca Gifford, my wife and partner in Parkinson’s   Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter @ParkinsonCanada   Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD– The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.    Credits Dila Velazquez – Story Producer Rob Johnston – Sound Design

In this episode of When Life Gives You Parkinson’s, I put the old adage “laughter is the best medicine” to the test. I go through improvisational comedy training and perform live on stage for the first time in nearly thirty years. Plus, I connect with four people who live with Parkinson’s; Glenn Lurie, Kitty Fitton, Phil “Badger” Smith and Paul Mayhew-Archer. They all have turned to stand-up comedy after their PD diagnosis. Paul Mayhew-Archer, star of the one-man show “Incurable Optimist,” admits he gets a pleasant dopamine rush on stage, but he says it’s not the same as medicine, “So, I mean, they say that laughter is the best medicine. And, you know, it's rubbish, because in my case Sinemet is the best medicine. But laughter is certainly pretty high up on the list.” Sinemet is the brand name of Carbidopa-Levodopa, the gold-standard treatment for Parkinson’s disease. Aside from the dopamine hit, comedian Phil “Badger” Smith has discovered it helps with some specific symptoms of Parkinson’s, “Apart from anything else helps of practicing speech and confidence and helps to battle depression and anxiety. Because you're performing and if people are laughing at your jokes, it gives you a real buzz.” I participated in a series of three workshops called “Improv for Parkinson’s” at Vancouver Theatre SportsImprov Comedy Institute, which concluded with a live performance. For me, performing on stage was such a rush, it triggered a bloody nose as soon as I stepped on stage and heard the applause and roar of the crowd. I had to excuse myself before introductions. I quickly shoved tissue up my nostril and clamped my nostrils shut and returned to the stage. After all, they show must go, but more importantly, improv training taught us to roll with the punches. With Parkinson’s, improv and life, the more you can be in the present moment and react to what is right in front of you, the easier it all becomes. Improvisational comedy and Parkinson’s was the focus of a first-of-its-kind research projectat North Western University in 2017 in conjunction with the Second City School of Improvisation in Chicago. The results show that despite common amotivation and symptomatic apathy and unlike therapies and exercise classes, the improv workshops were well attended and enjoyed among patients of PD of varying ages and disease severity. In regards to measures of efficacy, the only variable that improved significantly was the change in UPDRS part II, which focuses on how difficult the activities of daily living are for people with Parkinson’s. Researchers believe this preliminary finding may be a result of the humor and games that aimed at improving communications skills, stigma, anxiety and quality of life. More research will need to be done before the positive impacts of improv on Parkinson’s are confirmed.   Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to… Vancouver TheatreSports Improv Comedy Dan Dumsha Improv performer, instructorand executive coachhas a website www.dandumsha.comand can be found on Facebook @Dan.Dumsha, twitter@dandumshaand Instagram @dandumsha Johnny Kerrigan is in the Vancouver TheatreSports rookie league. My Improv Troupe Norm Blain Creston Froats Peter Jarvis Geoff Cohen Richard Froese John Hougan Glenn Lurie is living in North Carolina. Here is a link to the articlethat first peaked my interest in Glenn. You can follow him on Facebook @Glennluriecomedianand twitter @GMLurie. Kitty Fitton can be found at her website www.kittyfitton.comand you can follower her on twitter @kitty_fitton Phil “Badger” Smith on twitter @phil_badger Paul Mayhew-Archer has a website http://mayhew-archer.com/and is on twitter @mayhewarcher Rebecca Gifford, my wife and partner in Parkinson’s, who always laughs at my jokes. Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter @ParkinsonCanada   Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD– The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.    Credits Dila Velazquez – Story Producer Rob Johnston – Sound Design

In this episode, we discuss what it is like to a get a diagnosis of Parkinson’s in the prime of your life when you are happily married with four kids and had been anticipating a return to full time work after a tour of duty has a full time Mom. On her website, www.kittyfitton.com , she says, “I am a comedian, Aviation fiend, Air-Scout leader, mother, wife, friend, and I have Parkinson’s Disease. It’s the last thing that’s the real kick in the guts, but also the thing that has helped to transform my life from humdrum to extraordinary.” What I like so much about Kitty is that she is real, authentic and vulnerable. I relate a lot to her story. Kitty was diagnosed with Parkinson’s in early 2016. Originally, from North of England, Kitty and her husband Craig have been raising their four kids in New Zealand since 2011. When the diagnosis came, Kitty admits she cried for days. A visit from a Parkinson’s New Zealand associate gave her the information and inspiration she needed to move forward. Kitty admits though, she and Craig often say they like the taste of sand, because all too often they put their heads in the sand when it comes to the realities of Parkinson’s disease. In the past year, if they are being honest with each other about the PD, Kitty and Craig have noticed changes. Her gait is more pronounced and she uses poles for tramping. They both also notice her face is a bit droopier and more masked than a year ago at this time. Kitty remembers a time, pre-diagnosis; they used to sit out back, with a glass of wine, under the stars, planning grand tours of Europe. But, at some point that stopped dreaming about the future and now fear it or don’t discuss it at all. After all, when it comes to future planning, fears of disease progression can be paralyzing. In a recent conversation, Kitty says Craig lamented that because of the Parkinson’s they could not plan anymore. She argued, “I can still do stuff.” Admittedly, she is slower, but she still dreams, still plans and still has a lot of living to do. That being said, Kitty does fear the days when she will need more assistance, “I’m terrified of losing cognitive ability and of not being independent.” However, she has warned her husband about one thing, “If you ever tell someone you are my carer in public, I will punch you.”  These honest, tearful and hysterical moments of conversation between spouses, exchanging fears and assumptions, are happening with couples and families dealing with Parkinson’s around the world. I thank Kitty sharing her story and for giving us a peek inside her family life. No matter how different our journeys may be, the conversations couples and families have through tears and fears is universal and makes us all feel a bit more normal when we realize we aren’t the only ones who stopped dreaming about vacations or who’ve come to the conclusion that denial tastes a lot like sand. If you have a comment or question about the podcast, you can email usparkinsonspod@curiouscast.ca We invite you to add your voice to the show and leave a message for us here;https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Special thanks to…  Niki Reitmayer for picking up the slack, while I recover from some random non-PD health stuff. Kitty Fitton. Follow her on twitter @kitty_fitton, or go to her website https://www.kittyfitton.com/ The book from Parkinson’s New Zealand that Kitty referenced is available as a PDF download on the web. Just click here “Guide to Newly Diagnosed.” For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/Toll Free Hotline 1-800-565-3000 or follow them on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

This podcast and these show notes talk about suicide. If you are thinking about taking your own life or are worried about a friend or a loved one, call your suicide prevention hotline. It is available 24 hours a day, seven days a week in Canada. Call 1-833-456-4566. In the United States, it's 1-800-273-8255. Please ask for help. Reach out and talk to somebody. Your life is worth living. A full list of suicide hotlines from around the world can be found here. This is a special bonus episode of the When Life Gives You Parkinson’s podcast called “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday. On Monday, August 11, 2014 Robin Williams died by suicide. While he had has demons in drugs, alcohol and depression over the years, those are what killed him. Williams, diagnosed with Parkinson’s disease in May of 2014, was suffering from severe symptoms that would later be determined to be from Lewy Body Disease. In this Extra Dosage episode of When Life Gives You Parkinson’s we discuss the life and death of Robin Williams. We discuss his roles, friends, diagnosis, symptoms, decline, suicide, and the impact he’s had on all of us. His final year is details in a REELZ documentary in the U.S. called “When the Laughter Stops: Robin Williams.” Award winning Entertainment Reporter and the films Executive Producer, Dylan Thomas, is interviewed in this Extra Dosage episode of When Life Gives You Parkinson’s. We talked about how Robin created a mask so realistic no one knew he was suffering. “We never saw it. It wasn't in front of our eyes. And that's the great irony of the situation. Someone could achieve so much. He was a winner of an Academy Award, six Golden Globes, two Emmys, five Grammys, more than perhaps anyone could have ever imagined in a career. Yet at the same time, behind the scenes, there were issues in his private life that we didn't really know about. And that was, you know, his health condition, the fact that he had Parkinson's and that he had Lewy body syndrome.” His widow, Susan Schneider Williams, penned a letter to Nuerology.org titled “The Terrorist Inside My Husband’s Brain.” In it, she details some of the darkness Robin was facing. “Robin was growing weary. The parkinsonian mask was ever present and his voice was weakened. His left hand tremor was continuous now and he had a slow, shuffling gait. He hated that he could not find the words he wanted in conversations. He would thrash at night and still had terrible insomnia. At times, he would find himself stuck in a frozen stance, unable to move, and frustrated when he came out of it. He was beginning to have trouble with visual and spatial abilities in the way of judging distance and depth. His loss of basic reasoning just added to his growing confusion.” No one can bring Robin back. But his films and specials live on and make us laugh so hard it feels like exercise. That’s probably Robin’s last poke at Parkinson’s. Even in death, he produces as much natural dopamine in brains with and without Parkinson’s than anyone or anything else. If you are thinking about taking your own life or are worried about a friend or a loved one, call your suicide prevention hotline. It is available 24 hours a day, seven days a week in Canada. Call 1-833-456-4566. In the United States, it's 1-800-273-8255. Please ask for help. Reach out and talk to somebody. Your life is worth living. A full list of suicide hotlines from around the world can be found here. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Special thanks to… Paul Mayhew Archer, writer & producer http://mayhew-archer.com/ Neurology.org – Read Susan Schneider Williams full letter “The Terrorist Inside My Husband’s Brain.” https://n.neurology.org/content/87/13/1308.full Dylan Howard, American Media REELZ Channel CBS News, NBC News, ABC News, CNN, Fox News CBS This Morning For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/ Toll Free Hotline 1-800-565-3000 or follow them on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

In this episode of When Life Gives You Parkinson’s, Larry Gifford talks with three friends with Parkinson’s who set out to test the physical, mental, emotional, and spiritual limits of the human body after diagnosis. What they discovered was that challenges in life, no matter how extreme, are easier and more rewarding when you build a community of support around you and allow yourself to be vulnerable enough to ask for help. For many people with Young Onset Parkinson’s Disease (YOPD), the Parkinson’s journey can start as a lonely, aimless, hopeless, and dark ride. It takes time to begin to see the light.  A year after his diagnosis in 2011, Tim Hague, then 45, applied for the first season of Amazing Race Canada with his son and won. His life and advocacy since then is quite an unsolvable dichotomy for Tim,“Parkinson's has given me far more than it's taken,” Hague says. “I mean, Parkinson's gave me the Amazing Race, The Amazing Race gave us a huge financial payout in winning it, right? It was in winning the race that threw open the door to speaking and that threw open the door to writing a book. And I mean, Parkinson's has been a massive blessing in our life. And that's really difficult to wrap your head around because I hate Parkinson's. I hate it with a passion. There's not been a single day I've ever woke up and thought I was happy to have Parkinson's.” Tim is the founder of U-Turn Parkinson’s, a Canadian charity with a mission to empower people living with Parkinson’s in their pursuit of wellness. Jimmy Choi was 27 when he was diagnosed. He spent eight years denying his Parkinson’s, before he began to take it seriously. He started with a walk around the block. That turned into a jog, a run and eventually he ran a 5K. In the 8 years that followed, he has competed in over 100 half-marathons, 15 marathons, an ultramarathon and raised over $250,000 for Parkinson’s research. His advocacy hit new heights when he appeared twice on the NBC TV show American Ninja Warrior. The further he gets along on his journey, the more realizes he is not alone, “I think for a person with Parkinson's, it all starts with being open, accepting, really comfortable telling their story and not afraid to ask for help. You know, don't be that stubborn person. Don't be Superman.” Bret Parker, 54, is the Executive Director of the New York Bar Association. He’s also known as the guy with Parkinson’s who ran seven marathons on seven continents, in seven days. “You know, it really, really was tough. I mean, it was really tough at times.” Parker painfully remembers struggle to finish the races. However, he did have an epiphany through it all, “I also realized that there's a point when relying on people is okay. I'm a very independent person. All of these events that I've done have been a part of: individual races and individual activities. You know, I'm not much of a team sports player, but it's okay to have people supporting you and cheering you on and leaning on them.” Parker’s personal mantra is “Do epic shit!” And he does. Each year, he raises money for Parkinson’s research by competing in extreme physical activities from skydiving and triathons to 100 mile bike rides in severe conditions. He’s personally raised more than $500,000 for the Michael J Fox Foundation. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to… Tim Hague can be found at www.TimSr.ca and on Facebook, Twitter and Instagram, he is @timhaguesr. He is also the founder of U-Turn Parkinson’s charity based in Winnipeg, Manitoba in Canada.  Sheryl Hague, Tim’s amazing wife and partner in Parkinson’s. Jimmy Choi is on The Michael J. Fox Foundation for Parkinson’s Research Patient Council. Follow him on Twitter @JCThr33, check out his Facebook page or follow him in Instagram @JCFoxNinja. Bret Parker is the Co-Chair of The Michael J. Fox Foundation for Parkinson’s Research Patient Council. He’s @bretparker on Twitter. , Rebecca Gifford, my amazing wife and partner in Parkinson’s. Our presenting partner is Parkinson Canada http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter @ParkinsonCanada   Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

This is a special bonus episode of the When Life Gives You Parkinson’s podcast called “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday. In this episode of When Life Gives You Parkinson’s I visit Jillian Carson, 59, at her new Parkinson’s Wellness Centre in Victoria, British Columbia. It’s a dream that I thought would never happen.” Carson, a retired physiotherapist and nine-years into her Parkinson’s diagnosis, knows how important the centre is for people, “Everyone deserves to have the care they need. I see it now. I watch them come from their classes. They are smiling, sweating and there is lots of laughter. It’s beautiful.” The door into the centre reads “Jillian’s Gym” and there is no doubt she is the queen bee of this hive of activity. The centre is buzzing with people: coaches, volunteers and dozens of people with Parkinson’s. They take turns with heavy bags, speed bags, and other boxing equipment, stepping through giant tires, riding exercise bikes, stretching, jumping and running. While there, Jillian challenged me to a “yellie” competition. We both got down on all fours and counted by two as loud as we could. Our voices propelled a small toy forward and we followed behind racing against each other to see who’s “yellie” would cross the finish line first. That exercise worked on our cognitive skills, vocal expression and physical ability. And we laughed and laughed and laughed.  Jillian preaches the importance of having a lot of support for your PD journey, “With Parkinson’s you need a life raft. Not one person, but at least eight. Because, if one of them is not available you need someone else. Your life raft needs to be full.” The centre, which opened in September 2019, is a life raft for an entire community of people with Parkinson’s and it’s staying afloat thanks in a large part to a $500,000 anonymous donation. Visitors to the centre do not have to pay to take part. Donations, however, are accepted. Jillian is hopeful Parkinson’s Wellness Project becomes as much of a place of support as it is for exercise. She remembers the dark days in her own life after her diagnosis just three weeks before her 50th birthday. “It was hard. I was in denial for those years. What really changed it was really meeting everyone else at World Parkinson Congress. You look around see all these people living well with Parkinson’s, they’re laughing and I thought, I can do that too.” Despite the progression of Parkinson’s, which has affected her ability to cook and is causing more falls, she is full of energy and positivity. The secret is she benefits from seeing so many people benefit from the centre as they do using it. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod   Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Special thanks to… Jillian Carson, founder of Parkinson’s Wellness Project https://parkinsonwellnessproject.org/ Visit Parkinson Wellness Project at 202-2680 Blanshard Street, Victoria BC V8T 5E1 (250) 360-6800 To support the centre, donate here https://support.parkinsonwellnessproject.org/ For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease.    Credits Dila Velazquez – Story Producer Rob Johnston – Senior Audio Producer

In this episode of When Life Gives You Parkinson’s I talk with three friends about Deep Brain Stimulation. Becca Miller is contemplating it, David Sangster just had it and Jim Smerdon had it five years ago. “You hear everything,” said Jim Smerdon of Vancouver, B.C. when I asked what he heard when doctors drilled a hole through his skull and into his brain. “It was the clearest memory I’ve ever had of anything of my life.” Jim was awake for the first five hours of Deep Brain Stimulation to treat his Parkinson’s disease. My neurologist told my wife and I that if my motor symptoms and dyskinesia from carbidopa-levodopa do not level off in six months, we will add my name to the DBS evaluation list. The wait time for evaluation in British Columbia is three years and currently there is just one doctor who performs surgery here. “Deep Brain Stimulation is considered the most commonly performed surgical treatment for Parkinson’s disease,” said Jamie Hamilton, senior associate director of research programs for the Michael J Fox Foundation. Hamilton explains that DBS is an invasive procedure which implants electrodes deep in the brain. The electrodes are controlled by a neurostimulator which is surgically implanted into his chest and sends electric impulses to specific targets in the brain. Becca is a single mom of a 7-year old. She is scared to have DBS while her daughter is so young. But, she understands the benefits, “…that sounds just amazing. It feels like in some ways, you know, in some ways it's like a last resort and in other ways it feels like a reset. And a gift of time.”   For David, it has been life changing. He’s back to playing with his kids, being an equal partner to his wife and playing piano. “It’s amazing,” says David. “I can be there when my kids need me - every time. (I can) take them to school, drive the car, and make them cereal. It’s also being there for my wife and being more of a person than I used to be.” Jim was able to completely come off the carbidopa-levodopa for a year. But, his wife Deana Grinnell says he’s back up to 8 or 9 pills per day. That’s fewer than the 20 or so he was on prior to surgery by the dyskinesia is back. “His disease is progressing,” Deana said. “It’s effecting his balance. His speech is getting softer. It’s just marching on.” Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to… Becca Miller Jim Smerdon and Deana Grinnell David and Jane Sangster Jamie Hamilton, Senior Associate Director of research programs for the Michael J. Fox Foundation www.michaeljfox.org Rebecca Gifford, my amazing wife. Henry Gifford, Captain Awesome (Our son). Our presenting partner Parkinson Canada offers more information on DBS and advanced srugerycal therapies for Parkinson’s here https://www.parkinson.ca/event/advanced-surgical-therapies-dbs-and-duodopa/ or  head to http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter Parkinson Canada           @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust. 

This is a special bonus episode of the When Life Gives You Parkinson’s podcast which we are calling “Extra Dosage.” Full episodes of Season 2 are available every other Wednesday. Every six months, I visit Dr. Jonathon Squires at UBC’s Djavad Mowafaghian Centre for Brain Health. He is my neurologist and movement disorder specialist. Last week, my wife Rebecca and I sat down with him after our examination and interviewed him for the podcast. We talk about my symptom progression, my medicine regiment, DBS, biomarkers, what a cure will likely look like, stem cells, and the role stress might play in disease progression and symptom management. Even though my motor symptoms are beginning to appear on both my right and left side, in general the tremor and gate issues are stabilized year over year. I am however collecting non-motor symptoms with gusto including exhaustion, anxiety, active dreaming, insomnia, hot flashes, excessive sweating, constipation and bladder urgency. I regularly have difficulty recalling proper nouns and names or short-term instructions, weekend plans, etc. Rebecca noted to Dr. Squires that when I’m “off,” I often will be in a zone or bubble completely unaware of what’s happening around me and not hearing what she says. I am also dealing with neuropathy, dystonia and dyskinesia. In an effort to tackle a few of the more annoying symptoms, Dr. Squires increased my carbidopa-levodopa again. I am now taking five times a day, every four hours, with an optional sixth time in the middle of the night. He also added a sedative, an anti-depressant, a laxative, and Vitamin B Complex. All in – vitamins, supplements, medications and probiotics, I am swallowing more than 200 pills and capsules a week. The good news is medicine works and allows me to be a husband and ad, work, advocate and live life.  Due to the increased meds and dyskinesia, we begin to talk about deep brain stimulation (DBS) with Dr. Squires, what the time line is for me before needing DBS, and what risks I may have. If you have a comment or question about the podcast, you can email us: parkinsonspod@curiouscast.ca We invite you to add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmayer Twitter: @Niki_Reitmayer Special thanks to… Dr. Jonathon Squires, Movement Disorder Specialist, Djavad Mowafaghian Centre for Brain Health at University of British Columbia Rebecca Gifford, my wife. For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease. 

When Joy was 16-years old, she fell in love with Leslie. Back then, he smelled good. “He had a wonderful male musk smell,” she says. Dr. and Mrs. Leslie and Joy Milne were later married. Les became a consultant anesthetist and she was a nurse practitioner. Sixteen years later, his body odor changed – for the worse. He smelled off, overly musky and unpleasant. Joy even nudged him to wash more. Twelve years after that, he was diagnosed with Parkinson’s disease. At their first support group meeting, Joy realized the other people with PD smelled just like Les. Bravely, Joy asked researcher Tilo Kunath why no one had researched the smell of Parkinson’s. Tilo was shocked. He had never heard anyone talk about an odor of the disease. Neither had anyone else. Six months after that encounter, a colleague told Tilo that many cancers have smells, which made him think Joy maybe on to something. Tilo teamed up with Perdita Barran, a professor of mass spectrometry at the University of Manchester, and started to test Joy’s super smeller. They discovered she was smelling sebum, an oily secretion on everyone’s skin that is over-produced in people with Parkinson’s disease. Next, they focused on the molecules within the sebum. “We found, if we compared the samples from people with Parkinson’s with the people without, there were significant differences.” Barren says they found 17 compounds that were different, “Of those, four were significantly different and they always varied in the same way.” Barren and Kunath used that information to create a model which allows them to test anyone’s sebum at any time and predict, with 90% accuracy, if that person has Parkinson’s. The novelty of “The woman who smells Parkinson’s” initially brought ridicule and doubt from others in the scientific community, but as more and more research is being conducted, supporters are coming out of the closet. Joy feels some vindication, but knows there’s more work to be done on convincing the medical community that diseases have distinct odors. “How do elephants in a tribe know an elephant is ill and they protect it? How does a wolf know who is in the pack and is ill? Animals smell when they are ill. Sharks do as well. They have a super sense of smell. We are sentient beings. So why are we not accepting of it?” There currently are no biological tests or measurable indicators for Parkinson’s disease. Diagnosis of PD is a subjective call by a neurologist based on medical history, symptoms, a physical examination and neurological tests. It is imperfect at best. The research around the smell of Parkinson’s is an exciting and promising approach to finding that elusive biomarker. Additionally, testing sebum levels is quick, easy, cheap and painless making it a great option for monitoring disease progression and medication effectiveness, especially for people in rural areas who rarely see their neurologist. Thank you for listening. Add your voice to the show and leave a message for us here; https://www.speakpipe.com/WhenLifeGivesYouParkinsons Follow me, Larry Gifford  Twitter: @ParkinsonsPod Facebook: Facebook.com/ParkinsonsPod Instagram: @parkinsonspod Follow Co-host and Producer Niki Reitmeyer Twitter: @Niki_Reitmayer Thank you to… Joy Milne, Super Smeller. On twitter she’s https://twitter.com/stumpw0rk50 Tilo Kunath, reader in regenerative Neurobiology, Centre for Regenerative Medicine. Follow Tilo’s lab on Twitter https://twitter.com/KunathLab. Follow the Centre for Regenerative Medicine on twitter https://twitter.com/crm_edinburgh   Perdita Barran, a professor of mass spectrometry at the University of Manchester. Watch her TedX Palo Alto talk here.  Follow her on twitter https://twitter.com/perditab APOPO, discover the miracle of hero rats here: https://www.apopo.org/en Watch Founder of APOPO, Bart Weetjens give his Ted Talk here https://www.ted.com/talks/bart_weetjens_how_i_taught_rats_to_sniff_out_land_mines?language=en   Rebecca Gifford, my amazing wife. Henry Gifford, Captain Awesome (Our son). For more info on our presenting partner Parkinson Canada head to http://www.parkinson.ca/ The toll free hotline 1-800-565-3000 Or follow them on Twitter Parkinson Canada           @ParkinsonCanada Thanks also to our content and promotional partners Parkinson’s IQ + You– A free, series of Parkinson’s events from the Michael J. Fox Foundation Spotlight YOPD – The only Parkinson’s organization dedicated to raising awareness for Young Onset Parkinson’s disease and funds for the Cure Parkinson’s Trust.