When Life Gives You Parkinson’s podcast: A visit with the neurologist

This is a special bonus episode of the When Life Gives You Parkinson’s podcast that we are calling Extra Dosage. Full episodes of Season 2 are available every other Wednesday. Feel free to write to us at parkinsonspod@curiouscast.ca.  

Every six months, I visit Dr. Jonathan Squires at UBC’s Djavad Mowafaghian Centre for Brain Health. He is my neurologist and movement disorder specialist. On this Extra Dosage episode of When Life Gives You Parkinson’s, my wife Rebecca and I sit down with him after our examination. 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 sides, in general, the tremor and gait 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 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, Squires increased my carbidopa-levodopa again. I am now taking the medication 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 a 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 dad, work, advocate and live life.

Due to the increased meds and dyskinesia, we begin to talk about deep brain stimulation (DBS) with Squires, what the timeline is for me before I need 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: www.speakpipe.com/WhenLifeGivesYouParkinsons

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.

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. Jonathan 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 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.

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