Episode 5 Meet Ian Robertson Living with Parkinson's Positively Inspiring Others

Katherine Autin introduces you to Ian Robertson from Broderick, Saskatchewan, a person living with Parkinson's disease since his 2012 diagnosis, who intentionally has a positive attitude having fun with music and exercise to guide him in his mantra of power affirmations. Everyone who listens to Ian's gleeful attitude can't help but laugh and crack a big smile with him as he explains how he bounces a ball while exercising and singing to the songs he loves. You will love visiting his website, viewing his great exercise videos and reading his thought-provoking descriptions about his symptoms at https://parkinsonsmysuperpower.ca, aka: the human vibrator. One of Ian's symptoms is a fairly constant tremor and sometimes dyskinesia, except when the medications work. Listen to him talk about how he deals with the fact that the medication turns on and off without notice. He just keeps going through it all, adjusting his plans as needed!  He says that he feels blessed to have been in the sports world for so many years. Be inspired, laugh, smile, and learn about his power affirmations that tell him he had a pretty good day: when he laughs, exercises, and socializes. If you would like to connect with Ian, you can email him at ian@mtngoaltending.com. I know you will enjoy his happy attitude about his life, so contagious!

Katherine is a visionary 42-year entrepreneur and 24/7 caregiver for her husband who was diagnosed with Parkinson's disease more than 20 years ago. They know now he has had symptoms more than 46 years. She is a Parkinson's Expert and Board Certified Patient Advocate (BCPA) Consultant guiding people with Parkinson's and caregivers through complex journeys with her company, Parkinson Partners, https://parkinsonpartners.com. Connect with Katherine at kautin@aol.com, 502-314-8307.

When David was diagnosed Katherine was a 22-year visionary woman entrepreneur as a jewelry designer, manufacturer, and selling globally to gift and jewelry stores globally. Within a month of David's diagnosis, Katherine volunteered to run Parkinson's support groups at the Parkinson Support Center of Kentuckiana (PSCKY), served on their Board of Directors and led education programs. Over time, she became a Parkinson's Expert, known as the "Parkinson's Lady" and in 2018, she became one of the first 149 to be recognized nationally in the United States as a Board Certified Patient Advocate (BCPA). For more than 20 years Katherine has helped to guide hundreds of people living with Parkinson's and their caregivers through very difficult journeys.
 
Her book, My Unexpected Caregiving Detour: Becoming a Parkinson's Expert & Patient Advocate the Hard Way shares her ongoing 20+ year journey as a caregiver. Check for upcoming podcast episodes that will take excerpts from her book.

Katherine's passion is empowering those living with life-altering conditions and caregivers globally through her Visionary Caregivers programs like her Patient Advocate Training for Caregivers that is a six-month online training beginning February 10th (check it out and register for the early bird discount of $30 at https://visionarycaregivers.com/patient-advocate-training-page) and with her podcast. Episodes offer you:

• Her personal story as she shares stories from her book, An Unexpected Caregiving Detour: Becoming a Parkinson's Expert & Patient Advocate the Hard Way
• Introductions to creative and innovative guests who offer caregivers amazing and inspiring products
• Interviews with caregivers and people living with chronic conditions
• Experts speaking about helpful critical information we all need to know as caregivers

 ENJOY LISTENING! Check back for more great episodes.

Transcript

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Katherine Autin: Hi! I'm Katherine Autinn.

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Katherine Autin: I'm a Parkinson's expert and board certified patient advocate. I own a company, Parkinson partners, and I have a new initiative, visionary caregivers. This podcast is visionary caregiver show

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Katherine Autin: with Katherine Autin and the purpose of this is not just for caregivers. It's for anyone who is living with a chronic disease like Parkinson's or other. It's to help each other learn and get new ideas, and also to hear from inspirational people who are taking proactive steps

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Katherine Autin: to live with their disease or condition. In many cases my husband was diagnosed with Parkinson's 20 plus years ago, but we now know he's had symptoms 46 plus years.

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Katherine Autin: because just about the time we got married 46 years ago, he started losing his sense of smell. And of course we didn't know. That's what it was we had no idea. So it's been a long journey, very interesting.

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Katherine Autin: So I bring on people like my guest today. Ian Robertson from Roderick Saskatchewan, and I want to thank him for appearing because he has Parkinson's disease. He lives with it.

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Katherine Autin: I think I would call it gleefully, but also in with intent. And that's so awesome. So I wanted to introduce Ian Robertson to you. Take it away, Ian.

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Ian's Phone: Hi, as Katherine said. My name is Ian Robertson. I'm from Broderick, Saskatchewan.

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Ian's Phone: big village of 86 people.

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Ian's Phone: I was diagnosed, diagnosed with Parkinson's on May 25, th 2,012.

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Ian's Phone: I was 56 years old at the time, turning 57 later in that year

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Ian's Phone: I've been self employed most of my career.

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Ian's Phone: My wife and I had owned a small motel in a village town called Outlook.

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Ian's Phone: My wife is a production potter. She sells her pottery

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Ian's Phone: oh, about 200 to 300 stores across Canada.

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Ian's Phone: and I'm sort of her maintenance. Go to Guy, or I was before Parkinson's.

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Ian's Phone: And I also ran a goalie school called Mind and it goaltending.

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Ian's Phone: I did that for about 20 years

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Ian's Phone: we work with the high performance goaltenders for my province of Saskatchewan, and we did coaching certification programs for hockey Canada.

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Ian's Phone: and most of the views that

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Ian's Phone: I take into my Parkinson's. I got from our hockey school, and

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Ian's Phone: that's about where I go from. Here, Katherine.

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Katherine Autin: Well, thank you, Ian, that's just a very smidgen of your life. But I'm curious, because I'm a Parkinson's expert. I'm always trying to learn what it is that brought you to go and look for a diagnosis like what symptoms were bothering you in the very beginning, before you got diagnosed.

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Ian's Phone: The one that really got my attention, was my tremor.

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Ian's Phone: and I just thought it was a pinched nerve like everybody else. And

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Ian's Phone: and I really wasn't gonna do much for it then. I was in my wife's studio, and I was like, there's a long hallway in it at that time.

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Ian's Phone: and she goes, are you okay? And I said, Yeah, why, she's like

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Ian's Phone: the date isn't right. You, miss misstepping.

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Ian's Phone: And then she noticed my shuffle and said, Well, maybe we should go and get something like that.

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Ian's Phone: and I happen to whatever set or gone under lucky card.

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Ian's Phone: I went to my doctor. His father had Parkinson's, so he was familiar with it.

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Ian's Phone: and I got into see a movement disorder specialist within a month.

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Katherine Autin: Wow!

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Ian's Phone: And really, yeah.

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Katherine Autin: I'm not.

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Ian's Phone: But me.

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Katherine Autin: That does not happen in the United States ever.

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Ian's Phone: No, I was just a fluke roll of the dice like I got a cancellation. Somebody canceled my God filled in.

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Ian's Phone: I went to my movement to solar specialist got diagnosed, and

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Ian's Phone: I think it was February. From time I noticed the 1st symptom to the time when I got diagnosed it was like 2 and a half months.

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Ian's Phone: and I've been.

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Katherine Autin: Oh, my God!

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Ian's Phone: Saying movement, disorder specialist

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Ian's Phone: for all 12 years. There's 13 years now I'm going into, and I do a little bit of work for him on the side, like when he gets newly diagnosed people. Sometimes he sends them my way to talk to them.

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Ian's Phone: No, that's.

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Katherine Autin: Great.

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Ian's Phone: We have a pretty good report.

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Katherine Autin: You know what, Ian that is so needed? It. And it doesn't happen very often.

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Katherine Autin: And I thank you for that, because somebody needs to guide. I mean, this is what I do professionally is. I guide people through the Parkinson's

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Katherine Autin: journey. It it can be short, it can be long and families involved, and sometimes they're not involved. So I'm assuming that your wife, Susan, is involved with you and helping you.

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Ian's Phone: Yes, she is more than she thinks she is she.

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Ian's Phone: and she ignores me like an ostrich with her head buried in the sand. But that forces me to do things that

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Ian's Phone: that I probably wouldn't have done.

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Ian's Phone: Yeah, if she would have done it for me. So she makes me a little more independent.

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Katherine Autin: Yeah. So you think she's more of a caregiver than she thinks she is.

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Ian's Phone: Yes, by far.

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Katherine Autin: That's very often how these things go. And so I guess one of the things I'm wondering is, when you were 1st diagnosed. Did the doctor give you medication at first, st and what was it.

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Ian's Phone: He tried.

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Ian's Phone: I didn't take medication for the 1st 4 years of my diagnosis.

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Katherine Autin: Okay.

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Ian's Phone: I was leading quite an active lifestyle, like we ballroom dance. We both ran, we hiked, I curled we still play baseball, and so I was producing artificially some dopamine in other parts of my brain.

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Ian's Phone: That we're sort of compensating for that. And after about 4 years, that's when I started to take medication.

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Ian's Phone: And I saw.

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Katherine Autin: What was it that drew you, though? What what made you make that decision, though, to go ahead after 4 years of a diagnosis

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Katherine Autin: I noticed I was starting to get a little more lethargic and a little more.

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Ian's Phone: Well, nothing pain, but more irritant, irritating me more.

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Ian's Phone: and like I started to get

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Ian's Phone: the the foot cramping was was really drove into it more so than anything else.

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Katherine Autin: So one of your symptoms then, was a type of dystonia in your feet.

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Katherine Autin: We're cramping up and like grabbing like almost like a claw. Is that how it was.

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Ian's Phone: Pretty much. The Estonia is

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Ian's Phone: probably the worst symptom I have, and fortunately I don't get it as often as I used to.

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Ian's Phone: but it's it's quite disability.

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Katherine Autin: Well, so I have a question for you. You had the tremor.

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Katherine Autin: What was what do you think was your second symptom that either you or Susan noticed.

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Ian's Phone: Probably my lack of senses in my smell and my taste.

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Ian's Phone: and, like you said before, like you've really been living with it for 5, 1015, 20 years, who knows how long?

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Ian's Phone: And if you think back of it, I I used to was always a vivid dreamer.

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Katherine Autin: Huh!

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Ian's Phone: And but I could always control my dreams. So I never had nightmares when I was a kid, like if I was gonna get killed, I'm superman.

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Katherine Autin: Wonderful thing to do.

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Ian's Phone: And I could always pick them up like if I had to get up and go to the bathroom. I did fall, but I just need to pick them right up like a pause. So that was probably one of the symptoms. And then I

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Ian's Phone: ran into a bad case of halitosis. Bad breath.

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Ian's Phone: And it took a while to correlate that with Parkinson's because

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Ian's Phone: of the lack of saliva that I produced, caused a lot of dry, dry mouth, and

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Ian's Phone: and so the bacteria would grow a little easier and quicker in there, right.

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Katherine Autin: That's a good thing you're bringing up, though, because most people don't even they don't even connect halitosis with Parkinson's. And there's an understanding of all the changes that are going on inside the body before you actually see some of the movement. Symptoms.

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Ian's Phone: That's really.

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Katherine Autin: Complicated.

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Ian's Phone: Speaking of movements. That was another thing I had an issue with. I was constipated quite a bit.

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Ian's Phone: and I'm.

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Katherine Autin: There you go!

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Ian's Phone: Fortunately for me, like where most parties take their drugs and they become constipated, I became quite loose.

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Ian's Phone: Yeah. And so I bared my soul, shall we say on the highway quite a few times.

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Katherine Autin: Was that after you started taking medication.

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Ian's Phone: Yeah.

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Katherine Autin: Okay.

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Ian's Phone: Instead of had the reverse effect right?

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Ian's Phone: I still, I was still constipated by the understanding of the word constipation, because I couldn't cleanse my bowels completely.

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Katherine Autin: Right.

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Ian's Phone: But I was in the free, flowing stage, where I was never there before.

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Katherine Autin: Yeah. And you know, this is something that people don't really talk about very much, but actually one of the precursors of Parkinson's. You can have things like constipation years ahead of time, and people just talk it up to. Oh, that's just me.

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Ian's Phone: But sometimes it can be right, or something like that.

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Katherine Autin: Right. You're not eating, or here's the other thing is.

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Katherine Autin: when you're walking. You may not be swinging both arms, but you may not realize it.

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Katherine Autin: Did that happen to you.

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Ian's Phone: No, we did a lot of hiking, and I I found the rough terrain always made you for it.

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Katherine Autin: Had to use both arms.

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Ian's Phone: I use both arms, so I never really noticed that at all.

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Ian's Phone: And, as a matter of fact, now, I very rarely use a walking stick. I'll use one of my ball exercises little balls, and I'll bounce them or carry on my shoulder, and I don't. I don't swing my arms there, but my posture is more aligned. Then.

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Katherine Autin: You're very proactive when it comes to the physical activity. But what I find interesting is you have this website, and you can tell a little bit about that.

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Katherine Autin: your Parkinson. What is it.

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Ian's Phone: Parkinson's, my superpower.

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Katherine Autin: My superpower. I love that so. It's Parkinson's my superpower.com.

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Ian's Phone: Dot Ca.

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Katherine Autin: Dot. Ca, sorry. That is something I would recommend. People look at Parkinson's my power.ca.

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Ian's Phone: Parkinson's, my superpower.

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Katherine Autin: My superpower. Sorry about that. Parkinson's my superpower.ca.

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Ian's Phone: I got that wonderful.

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Katherine Autin: Videos of you exercising on there which are inspirational.

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Ian's Phone: Well, I have a different view on exercise than most people

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Ian's Phone: like I. I find it quite hard to ask us parties who are moving 24 HA day

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Ian's Phone: every minute, every second, to dedicate an hour of high stress workout.

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Katherine Autin: Right.

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Ian's Phone: That's exhausting. And to to me, if we if we're exhausted, we're not doing the drills right.

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Ian's Phone: But we we're losing some of our precision in in because of our exhaustion.

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Ian's Phone: So I I like to to try and dedicate.

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Katherine Autin: A second. What you just said is so important is that you don't have to exercise for an hour intensely to get benefit from the exercise.

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Ian's Phone: No. And what I find, too, a lot of them I'll talk

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Ian's Phone: about it is that there should be 4 components in every exercise you do. It should be a mental, component and visual component, oral component and a physical component. And if you only were focusing on one.

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Ian's Phone: then you're distracting from what I I've learned to be called neural hierarchy.

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Ian's Phone: There's a sequence of events that trigger your physical movements.

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Ian's Phone: You you bought. Your sense, has taken the input

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Ian's Phone: that are fed to your brain. Your brain accesses that input put in data and then sends it output to to your body to perform.

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Ian's Phone: And so Parkinson's doesn't really affect our performance. It affects our

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Ian's Phone: input, how we input the data and how we access the data.

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Katherine Autin: Right, right.

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Ian's Phone: And so sometimes you sit there. Oh, well, you fell down. Well, we've got to work on our squats. No, that's not my problem. My problem is.

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Ian's Phone: the Parkinson's has stolen the the subconscious thoughts that I use in my movements.

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Ian's Phone: and now I have to consciously think of them in order to perform.

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Katherine Autin: You mentioned that the other day you were talking to me, and you said that one of the most important things you have to do now is really concentrate

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Katherine Autin: on everything you do.

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Ian's Phone: Yeah. Because so when you walk, what did he teach you? Well, walk heel 1st go heel, toe heel, toe heel, toe. Well, that's that's putting in your conscious thought. Subconsciously, you never had to think about that before.

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Katherine Autin: Exactly.

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Ian's Phone: But Parkinson's has taken that ability to think subconsciously away from you.

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Ian's Phone: And now you don't have that thought process. And now you fall.

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Ian's Phone: or you fascinate, or whatever whatever you're drilling, you're doing.

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Ian's Phone: So. So we use this match, or sorry a mantra in our hockey school that

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Ian's Phone: when you practice there's 4 p's to practice. You have a purpose.

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Ian's Phone: You try to be as precise as possible. You try to be as powerful as possible, and you got to be patient because it takes time.

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Katherine Autin: Right.

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Ian's Phone: So one of the key things.

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Katherine Autin: That's difficult with your Parkinson's. The way that it's responding in your brain very often is you can't multitask. It's you have to really concentrate to multitask, and I see that in my husband quite often when he's taking his pills, he can't concentrate on anything other than getting that water and swallowing the pill, otherwise he'll choke

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Katherine Autin: constant intent.

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Ian's Phone: Yeah. And there's a big difference between multi tools and multitasking

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Ian's Phone: like I can use like a carpenter is gonna build a house. He uses many tools, but he's building a house.

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Ian's Phone: So if I'm walking or doing an exercise program, I already use as many tools as possible visual tools, mental tools, but it's when I get distracted

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Ian's Phone: from those. So sometimes those tools become a task.

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Ian's Phone: and that's where I reduce. That's where you screw up.

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Ian's Phone: You've assumed. You know you're comfortable with it. And all of a sudden you've lost focus on that

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Ian's Phone: use- using that tool.

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Katherine Autin: Right.

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Ian's Phone: Task.

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Katherine Autin: Well, you know, one of the things, too, I think, is difficult, is the stress in your life, at least in most of my clients, but also in my husband, the extra stress

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Katherine Autin: and anxiety in a life with Parkinson's it usually exacerbates your symptoms. It makes you tremor more or more rigid or frozen in your chair like my husband, and it's almost like a fight or flight kind of thing in your brain. It's like you can't shut it off until it's ready to shut off.

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Ian's Phone: Well, and the thing about stress and and anxiety in my approach is that I want stress in my life, because that means I'm living a life.

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Ian's Phone: If I don't have stress, then I'm not worried about anybody or anything.

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Ian's Phone: And so I want to have so much stress in my life that I don't have time to stress about it.

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Katherine Autin: Hey, Ian, there we go.

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Katherine Autin: You just said something that's really really important, because that's the way that you manage your your Parkinson's, you know. One of the things you were telling us the other day when I was listening in on Jose's group

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Katherine Autin: was that you had 3 things every day

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Katherine Autin: that you were happy if that happened every day. Then then that was a good day. Can you tell us about that?

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Ian's Phone: It all stems from our Goldie school like we were talking about.

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Ian's Phone: How how to get better performance in in your life, and most people have

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Ian's Phone: too much negativity like they worry about how they feed their body. But they don't worry about the garbage. They feed their brain.

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Ian's Phone: And so 65%,

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Ian's Phone: 65. The average person thinks of 300 to a thousand words a minute in their head.

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Ian's Phone: 65% of those words are normally native things like don't, can't.

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Katherine Autin: Right.

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Ian's Phone: This sucks. I know.

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Katherine Autin: That self talk is so important in everything we do.

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Ian's Phone: So we got to recognize that there's more good than bad in our days. Bad is more braggadocious. It's more loud, it's more more visible. It's out there yelling, look at me! Where where the good is just a little pinpoint here, pinpoint there, but then they're out there in a day in the millions.

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Ian's Phone: and if you can recognize them, then you can change your 65% negative self talk to 65% positive self-talk.

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Ian's Phone: And then you can come in.

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Katherine Autin: A mindset. You have to have that mindset, though, to change your your concept of what you're.

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Ian's Phone: Correct, and it and it doesn't come easy. It takes practice like.

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Katherine Autin: No, I use it. I use mindset as a caregiver because I've been doing this for more than 20 years, and it's very stressful being a caregiver.

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Katherine Autin: So what are the 3 things that you really look for at the end of the day? This is this has been good, because I.

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Ian's Phone: Yeah, so it it actually, once you recognize all the good, then you start recognizing what are the good that makes me my day a good day.

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Ian's Phone: and so we call them our power power affirmations for our goaltenders. And so I have a good day when I,

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Ian's Phone: whatever my 3 day things are. My 3 things are when I laugh when I socialize, and when I exercise.

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Ian's Phone: and so if I have, if I go at the end of the day, or do I laugh today? Then it doesn't necessarily mean I laugh. But somebody I was around laugh because laughter is contagious.

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Katherine Autin: Right, right.

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Ian's Phone: Did I socialize with somebody? Did I exercise at all? Did I go check, tick, tick, tick? I had a good day.

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Katherine Autin: So would you say most of your days you're able to have that 3 things at the end of the day that you say I had a pretty good day.

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Ian's Phone: Yeah, because I sort of surround my thing, my life, my day with good things like every morning I get up. I listen to pretty much the same. 3 songs.

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Ian's Phone: One is accentuate the positive by bing Crosby

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Ian's Phone: the other one is God. I keep forgetting it always look on the bright side of life for Monty Python.

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Katherine Autin: Oh, I love that.

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Ian's Phone: And then there's a Bb King song that my wife and I listened to when we were really poor, and the song is called, We're gonna Make it.

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Katherine Autin: Oh!

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Ian's Phone: So we.

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Katherine Autin: Those are great songs are those on your website.

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Ian's Phone: I think I've performed to all of them. Yeah.

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Katherine Autin: Okay. And you exercise to those, though right?

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Ian's Phone: This is something. I look for songs with positive lyrics, because that gets positive thoughts into your head, something that gets through movement, something. They're about 2 min to 3 min long, like a song, and they get my vestibular system working like I'll if you notice I'm I'm throwing a ball against the wall or bouncing it, which gets my eyesight, engaged my depth perception. I'll do tight turns.

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Ian's Phone: I'll change the elevation.

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Ian's Phone: You know, and if the slides quite fast, like I did one yesterday that just

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Ian's Phone: puckered me right out.

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Ian's Phone: And you know you do get your heart rate up, too, but so it doesn't have to be an hour, but it has to be therapeutic

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Ian's Phone: exercise like I I.

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Katherine Autin: Targeting, yeah.

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Ian's Phone: Yeah, exercise gets a bad rap because it's hard to get them to go, because what do they call exercise a workout?

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Ian's Phone: Exactly.

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Ian's Phone: And so you know, that means work's not fun.

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Ian's Phone: So so my body is a is not a tool. We don't work with it.

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Ian's Phone: My body is.

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Katherine Autin: That.

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Ian's Phone: My body is an instrument. I play it.

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Katherine Autin: Yeah, yeah.

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Ian's Phone: And play is fun.

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Katherine Autin: Okay. Alright!

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Ian's Phone: And so when I.

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Katherine Autin: Oh, my God!

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Ian's Phone: Well, that's.

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Katherine Autin: Full of these wonderful. I call them aphorisms like for life. But the power affirmations

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Katherine Autin: could be used in any part of your life, and that is so incredibly

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Katherine Autin: thought provoking. When you think about those specific things that you want to have accomplished, to say I had a good day because I did this. These things. I think that's awesome. So something else you told me, and I really was impressed by this. You told me that you went on. A canoe trip for 9 h with your wife, Susan.

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Ian's Phone: Yeah.

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Katherine Autin: The way you were able to get through. It was managing your medications because you know how they work. Can you talk a little bit about that?

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Ian's Phone: Oh, part of that getting through it is, I know. Sometimes I push my medication well beyond the means of its capabilities.

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Katherine Autin: I know. I know I'm gonna fail.

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Ian's Phone: During that day.

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Katherine Autin: Oh, oh, you know, ahead of time you're gonna.

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Ian's Phone: Well, my medicine doesn't last that long. I'm going to be out there 9 h. I'm going to have downtime.

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Katherine Autin: Okay.

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Ian's Phone: And so how do I?

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Katherine Autin: What that's like, though, but for people that are listening that don't know what that means. Downtime.

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Ian's Phone: Well, I'm pretty much useless.

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Katherine Autin: Yeah, I don't move. I.

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Ian's Phone: But I have a good support team, and they understand that. And they understand

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Ian's Phone: I gotta be out in the world when I and actually, I gotta learn how to exercise when I'm on off

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Ian's Phone: and transition, because I'm in a competition here. And so I know coach me goes. I gotta have offensive tactics. I gotta learn how to how to utilize those windows of opportunities when I'm on.

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Katherine Autin: Right.

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Ian's Phone: I gotta. I'm gonna have defensive

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Ian's Phone: tactics. That's when I'm off like, what? How do I get through these things when I'm off? Because most of times don't happen in my household. They happen when I'm out and about.

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Katherine Autin: Right.

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Ian's Phone: And I gotta know. How do. How do I?

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Ian's Phone: How do I feel safe when I'm off out in the public.

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Katherine Autin: So, Ian, I'm going to stop you for a minute, because I think people listening may not understand what you're talking about on, off and transition.

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Katherine Autin: So as a Parkinson's expert, I'm going to explain just a little bit about how the medication with Parkinson's sometimes will work, and then sometimes it won't work, so you might have taken your medication. But then, all of a sudden it kicks off, and and you're left going. Wait, wait! I was just moving. I can't move now. And so I think one of the things I'm trying to teach people, especially caregivers is that is not something you're doing on purpose.

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Katherine Autin: That is something that's happening in your brain, where the medication

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Katherine Autin: maybe didn't fully get taken up into the brain. The way it should have been being here.

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Ian's Phone: I find for me. The absorption rate of my medication depends on what I'm doing

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Ian's Phone: when I'm doing it, who I'm doing it with.

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Katherine Autin: Right.

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Ian's Phone: You know, because again, if I'm still going to produce dopamine, it's not a lot, but in other portions of your brain.

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Ian's Phone: you know, it's very, very small dosages, but there is not just the basal ganglia where where your dopamine is is.

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Katherine Autin: Right.

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Ian's Phone: Form. So sometimes I can last 3 h.

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Ian's Phone: Sometimes I can ask 2 h. Sometimes I can ask 4 h. It all depends on

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Ian's Phone: what I'm doing. And and so you have to have a good relationship with your Parkinson's.

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Ian's Phone: and so I I call it my Parkinson's. This is what works for me.

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Ian's Phone: and so, like I can go out. You talk about the time you you shut off my wife and I went out for supper in a little restaurant that we have in the village here, and I could have sprinted

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Ian's Phone: to the restaurant.

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Ian's Phone: I got down there, starting halfway through the meal. I can't even get my fork to my mouth.

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Katherine Autin: And that's what I see all the time with my husband and I. You know this show is called visionary caregivers. For a reason I am trying to teach caregivers by listening to folks who are dealing with chronic diseases, life, altering diseases

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Katherine Autin: that you, as a patient, can't really control what's going on. Your brain is going to do what it's gonna do when it's gonna do it. And it may be different every single day. It can even be different every single hour, you know.

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Ian's Phone: Like I said.

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Katherine Autin: My husband. 20 years diagnosis 21. Now, I mean, things have changed a lot.

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Ian's Phone: I sort of put it down to living a life is is all about trial and error, and living a life with Parkinson's is just that as well. Trial.

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Katherine Autin: Trial and error. But you know my husband considers himself Parkinson's defiant.

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Katherine Autin: He does not let Parkinson's ruin his life.

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Katherine Autin: He doesn't have the depression that many folks with Parkinson's has. He does have some of the anxiety, but that's something that he cannot control the depression. He's got a mindset where he won't let that take hold.

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Katherine Autin: But I think it's really hard for folks that don't understand Parkinson's that everyone has their own like you, said my Parkinson's. It's different for every single person.

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Ian's Phone: Like. When I 1st got diagnosed I was told you're gonna take your your pills regimen every 3, and I have never done that.

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Katherine Autin: Right.

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Ian's Phone: I've learned to scope. Okay, I can feel myself going from a high to a low. You can feel it.

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Katherine Autin: Right, right.

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Ian's Phone: You can't control the speed. It comes sometimes, but you can feel it coming.

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Ian's Phone: and we live most of our life with Parkinson in the transition phase, I would say.

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Katherine Autin: Between the medication on and.

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Ian's Phone: From going from on to an off or off to an on.

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Katherine Autin: Right back to the

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Ian's Phone: And the offer here and then the the plateau is mostly transitions.

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Katherine Autin: It's how you handle the transitions. And to me the worst thing you can say.

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Ian's Phone: For Parkinson is no like. Let's go out. No, let's do this. No, as if you say no, nothing good happens to you.

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Ian's Phone: Well, I think it's hard. It's hard to say yes to.

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Katherine Autin: But it's hard for people to say yes when they know that they're going to go off

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Katherine Autin: transition from being on to off and back and forth.

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Ian's Phone: It's more vanity thing than anything else, because normally, I find when I go out I don't want to go.

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Ian's Phone: I have a hell of a good time when I do go.

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Katherine Autin: But that's good. That's your attitude. And I love that positive. I'm gonna do it, no matter what, even if I'm on or off or in transition.

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Katherine Autin: I thank you for sharing that, because that is something that one people with Parkinson's need to understand and kind of maybe think about in their own lives, but also for caregivers to understand that everyone has their own Parkinson's, but also everyone has their own mindset, and maybe you can help them say yes to going out more.

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Ian's Phone: Well, the thing is even going to your checkup with your doctors sometimes. It's nice to go in an off moment so they can see you when you're off.

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Katherine Autin: Yes, yes.

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Ian's Phone: Don't. Don't show him your best side all the time, because.

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Katherine Autin: That's 1 of the most difficult things is going to the doctor, and they say, Well, I can't see your I can't see, because my husband doesn't have a tremor. They can't see his symptoms. They can only feel the rigidity in his body, or if he's frozen, they can see he's kind of hunched over and stuck.

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Katherine Autin: But it's very you don't want to go, the doctor being in perfect.

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Katherine Autin: If you're in that status, they can't really determine what they're supposed to do.

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Ian's Phone: But that's why you have a good support team like. When we went to New England I went with my wife and a really good friend of ours.

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Ian's Phone: and they helped me out to like direct our friend. We're we're on the backside of the

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Ian's Phone: middle. 3 h of rowing, and I'm just shut down. I got I'm just sitting, and all that's all I do can do to stay balanced.

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Ian's Phone: How are you doing? This is? I'm totally exhausted. She goes exhausted. I'm the one doing all the Goddamn road.

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Katherine Autin: But but that's people don't understand. And so I thank you for telling your story. I'm really excited that you were able to go on that 9 h canoe trip, even with dealing with what you were dealing with.

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Ian's Phone: And, to tell you the truth, we did a lot of hike like once I got diagnosed

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Ian's Phone: we still did a lot. We didn't quit doing a lot of things. We still ran, we still ballroom dance. We still hiked

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Ian's Phone: like we went to a province of Newfoundland, and they had 26 hikes at this provincial park there.

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Ian's Phone: or a national park, and we did 25 of them.

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Katherine Autin: Wow!

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Katherine Autin: That's awesome.

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Ian's Phone: It's being active is more important to me

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Ian's Phone: than than physical exercise. Because if you got don't have this going, you never get these going.

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Katherine Autin: Yes, yes, and you know one of the one of the things.

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Katherine Autin: I've actually written a book about my 20 years with my husband, my son being our godsend, who's a wonderful caregiver helping us out, and all the things we've traveled around the world with his Parkinson's. It comes with us wherever we go. You know it doesn't stay behind, but we've done a lot of things that we would not have done, and it was because we made that decision. We're going to get out. We're gonna we're going to do things.

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Katherine Autin: And and I think we have to encourage and inspire folks with Parkinson's and their families to get out. Do things enjoy life? Laugh? I really believe my husband says laughter is

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Katherine Autin: the guide to healing.

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Ian's Phone: Really.

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Katherine Autin: For him. He loves laughing.

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Ian's Phone: I find there are times you're going to get put so much into having a good day that you're gonna spend pay the price, and have 2 bad days.

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Ian's Phone: Right?

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Ian's Phone: You're gonna have to make that you have to make that evaluation with that one day is really good. And every time I've made that decision. It always involves grandchildren. For some reason

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Ian's Phone: I'm gonna have a really good day with grandchildren. But the next 2 days I'm gonna hurt like hell, but that one day was worth those 2 days of hell.

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Katherine Autin: Well, those are decisions that you have to make, though, and it's tricky. I'm hoping that some of the caregivers that are listening to this are getting some ideas that you know their loved. One may have Parkinson's, but it may not sound exactly like what Ian's going through. It may be their own version, because everyone with Parkinson's has their own Parkinson's.

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Katherine Autin: So can you tell us a little bit about your? Because I want people to go to your website and look at your videos. Can you tell us again about your website?

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Ian's Phone: Well, my website's more or less my journal like that. I don't really

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Ian's Phone: write a lot of. Well, I write a lot of things, because there's little stories every little video that I write.

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Ian's Phone: But on, it is sorry to put the date I was diagnosed, and the date of the video was taken. So I can read.

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Ian's Phone: Refer well, how I was moving in those days.

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Ian's Phone: and what I'm trying to do is show that

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Ian's Phone: there's always 2 min of every hour you can put where every day, that's all. You got

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Ian's Phone: into a good workout, and I noticed when I 1st started doing it.

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Ian's Phone: I was only gonna do it for the month of January.

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Ian's Phone: and I got such good response to it. My wife said, Well, you can't quit. And I said, Okay, well, I'll see if I can do it for a year.

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Ian's Phone: And it was really fun, because you got to plan. Well, we've got to find a song that goes wrong with this thing, and.

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Katherine Autin: I want people to go and listen, because while you're exercising, you've got music going, or you're singing, or you're bouncing the ball while you're walking.

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Ian's Phone: I play the I played a video on the TV really loud. So I gotta talk over it. So that gives you my voice exercise.

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Katherine Autin: Yes. Yeah.

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Ian's Phone: But that's.

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Katherine Autin: But that's good. That's beach exercise, and that's important. That's a big part of it.

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Ian's Phone: And when you look gonna end up, that's true.

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Katherine Autin: Here pretty soon. Cause I'm trying to keep these short, because I don't want anybody to kind of fall asleep while they're listening to us. I hope this was interesting for folks.

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Katherine Autin: Ian, I I want to thank you so much for appearing as a guest on the podcast I'm just getting this started just started this last month, and it's it's now January 2025. So you know, this is a new venture for me. I have the pod. This is number. This will be number 5.

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Katherine Autin: So I'll be putting that information. And in the description, if you're looking at the description, those of you who are listening to the audio, there'll be a link to his website and anything else that he wants us to have access to. And if you want to, Ian, you can give me your email if you want people to contact you, you tell me what to put in the description, and I will do so.

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Katherine Autin: but I want to thank everyone so much for listening, because I think this is going to be helpful, Ian, from sets. Kechewan. Thank you so much for being here. This was just a joy, and you know we've talked many times before, and every time I'm inspired by your attitude I'd love to interview Susan next time when she's back from her trip.

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Ian's Phone: She's actually in my mind, she just commented. She says I hate traveling without you. I gotta stand in line now all the time.

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Katherine Autin: There you go. So thank you so so much, Ian, and you know, please give me the information that you want people to contact. You tell us again, what is the name of your website?

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Ian's Phone: Parkinson's, my superpower.

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Katherine Autin: I love it.ca.

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Ian's Phone: Dot Ca.

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Katherine Autin: Dot Ca not.com.ca.

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Ian's Phone: And also, you can see me on Facebook same name.

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Katherine Autin: Great, and I. You can look me up on Katherine J. Autin, that's my Facebook page. I have Parkinson partners is also my Facebook page and visionary caregivers is also my Facebook page. So anyone that wants to look up information and keep updated on things, new programs new, everything

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Katherine Autin: so signing off for visionary caregivers show with Katherine Autin. Thank you, Ian Robertson.

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Katherine Autin: Such a pleasure.

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Ian's Phone: Thank you, Katherine.

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Katherine Autin: Thank you. Bye-bye.