Extra Dosage 4: A visit with my neurologist

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: [email protected] 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.  Learn more about your ad choices. Visit megaphone.fm/adchoices