Episode 1 Katherine's Prequel to Caregiving Story

This episode is about how unbelievably scary the complicated symptoms were that led up to Katherine Autin's husband John David's (we call him David) Parkinson's disease diagnosis in 2004. Hear from Katherine the years it took to get a diagnosis and how it completely changed their lives. 

Check for upcoming episodes that will take excerpts from her book, My Unexpected Caregiving Detour: Becoming a Parkinson's Expert & Patient Advocate the Hard Way to share her 20+ year journey as a caregiver.

Katherine Autin is a 24/7 caregiver for her husband, John David (we call him David) who was diagnosed with Parkinson's disease in 2004. At that time, she 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 began running 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 as a Board Certified Patient Advocate (BCPA). For more than 20 years Katherine has helped to guide people living with Parkinson's and their caregivers through very difficult journeys. 

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: Hello!

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Katherine Autin: Welcome to visionary caregiver show with Catherine Autin.

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Katherine Autin: This is my first, st podcast.

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Katherine Autin: And I'm really excited because I've been wanting to talk to you all.

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Katherine Autin: The whole world about caregiving.

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Katherine Autin: And this episode that I'm doing.

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Katherine Autin: Is something that's near and dear to my heart.

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Katherine Autin: Because I'm a caregiver.

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Katherine Autin: A 24, 7, caregiver.

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Katherine Autin: For my husband, who was diagnosed with Parkinson's.

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Katherine Autin: 20 plus years ago.

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Katherine Autin: And what I wanted to let you all know is that this is the beginning. It's a prequel.

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Katherine Autin: To the book that I am publishing.

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Katherine Autin: My unexpected detour as a caregiver.

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Katherine Autin: Becoming a Parkinson's expert and patient advocate.

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Katherine Autin: The hard way.

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Katherine Autin: So to lead up, to.

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Katherine Autin: Where I am in my life right now.

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Katherine Autin: And why I'm doing this.

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Katherine Autin: Because I run 2 companies. And I'm also doing the podcast.

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Katherine Autin: And I'm a 24, 7, caregiver.

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Katherine Autin: So I'm sure you all know as a woman entrepreneur.

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Katherine Autin: And as a business owner.

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Katherine Autin: It's really busy.

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Katherine Autin: But we thrive on that.

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Katherine Autin: And those who are entrepreneurs know that.

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Katherine Autin: So the story begins like this.

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Katherine Autin: In, about.

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Katherine Autin: 1998 or 1999.

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Katherine Autin: My husband.

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Katherine Autin: His name is John David, but we call him David.

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Katherine Autin: Started showing some really strange symptoms.

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Katherine Autin: And we were trying to figure out what was going on. We were actually in Mackinaw Island.

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Katherine Autin: Are actually getting ready to get on the ferry.

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Katherine Autin: At Mackinac Island.

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Katherine Autin: And honestly I started noticing something strange. My husband had the luggage.

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Katherine Autin: And he went to go pick it up, and his arms started shaking.

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Katherine Autin: So I thought for sure he had.

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Katherine Autin: Maybe pulled a muscle or strained his arm or his back.

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Katherine Autin: Or his neck, and so I asked him. I said.

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Katherine Autin: Did you hurt yourself? Did you pick something heavy up.

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Katherine Autin: What do you think's going on.

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Katherine Autin: And he really didn't know. He had no idea, nor did I. Of course.

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Katherine Autin: So.

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Katherine Autin: Later that week.

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Katherine Autin: We were in Mackinac Island.

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Katherine Autin: And we were in bed, and he turned over, and the whole bed shook.

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Katherine Autin: And all I could think of was.

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Katherine Autin: He's really.

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Katherine Autin: Strained his arm, or something else is going on, and I had no idea what it is. You know none of us, unless you're a doctor, and even if you are, you may not see signs.

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Katherine Autin: That would indicate.

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Katherine Autin: That's a certain diagnosis, or maybe that's going on.

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Katherine Autin: So the whole bed shook, and again I asked him.

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Katherine Autin: What's going on.

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Katherine Autin: I don't understand, because this is not normal for him.

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Katherine Autin: Um David.

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Katherine Autin: He's healthy, I mean. He's pretty healthy. I'm the one that's had issues my whole life.

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Katherine Autin: And so I kind of was like, Okay, well, let's just watch it. Let's see what's going on.

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Katherine Autin: And I think the hardest part about all of this.

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Katherine Autin: This was when I actually became a caregiver, even before he was diagnosed.

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Katherine Autin: Because I started thinking, what could this be.

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Katherine Autin: Do we need to see a doctor.

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Katherine Autin: Does he need to see a see a specialist or.

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Katherine Autin: Or what is it?

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Katherine Autin: You know, because this wasn't usual.

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Katherine Autin: And we had really no idea what was going on.

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Katherine Autin: So when we got back to Louisville, Kentucky, which is where we live.

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Katherine Autin: I remember talking to him and saying.

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Katherine Autin: Maybe we should go get this checked out.

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Katherine Autin: So we kind of checked it out. We went to our regular doctor, and she said, Oh, it's it's probably just, you know, a torn something, or or he strained a muscle or.

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Katherine Autin: Who knows? Let's go do X-rays, etc. So we went, the whole gamut.

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Katherine Autin: We did the X-rays. We did the blood test.

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Katherine Autin: And he was still having issues.

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Katherine Autin: But.

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Katherine Autin: Then there were other things that were beginning to happen, and I didn't even realize.

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Katherine Autin: What they were. I just knew something was off.

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Katherine Autin: Sometimes when he would speak because he worked at the Us. Department of Commerce's International Division.

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Katherine Autin: Um, and he was a Federal employee.

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Katherine Autin: And he had to speak for quite a bit of time. He was helping companies in Kentucky export their products.

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Katherine Autin: Overseas, and he spent a good deal of his time talking to people at embassies. Us. Embassies.

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Katherine Autin: Overseas, and folks in DC. And.

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Katherine Autin: And all over.

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Katherine Autin: And so I.

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Katherine Autin: Started talking to him about.

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Katherine Autin: Let's keep going on this. Let's find out what this is, because.

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Katherine Autin: You know this is not normal. But when he was speaking.

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Katherine Autin: He started doing something with his fingers, and I thought he was nervous.

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Katherine Autin: I later realized I had this ah, moment I call it Aha! Moment.

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Katherine Autin: Many of us have those.

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Katherine Autin: Where he was.

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Katherine Autin: Putting his thumb and his forefinger together.

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Katherine Autin: And middle finger sometimes, and kind of.

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Katherine Autin: Just.

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Katherine Autin: What they call it pill rolling, but it was just.

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Katherine Autin: Pushing his thumb against his fingers.

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Katherine Autin: While he was talking, so I thought he was nervous.

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Katherine Autin: Um maybe anxious.

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Katherine Autin: I thought maybe it was just a part of his brain that needed to do something else. While he was speaking.

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Katherine Autin: Well, as it turns out, that's exactly what that was. I would never have known that until later on.

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Katherine Autin: So time went on.

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Katherine Autin: And.

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Katherine Autin: We took him to another doctor.

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Katherine Autin: And that doctor said, You know.

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Katherine Autin: Probably ought to see a neurologist, but you know, in the meantime.

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Katherine Autin: Let's maybe do MRI, or something like that. So.

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Katherine Autin: We talked to him for a bit, and he said.

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Katherine Autin: No, maybe better wait till you see the neurologist, because they may want to do some other test.

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Katherine Autin: We all know doctors are sometimes guessing because they really don't know until all the tests are done.

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Katherine Autin: So the bottom line on this was, we went from one doctor to another.

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Katherine Autin: And.

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Katherine Autin: I think we went to a neurologist, probably after the 3rd doctor.

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Katherine Autin: And we realized.

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Katherine Autin: There was something else going on, but.

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Katherine Autin: Neither one of us had any.

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Katherine Autin: Indication that it had anything to do with neurology. The brain.

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Katherine Autin: And.

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Katherine Autin: I don't think I even thought about what it could be.

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Katherine Autin: And so.

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Katherine Autin: The doctor did the MRI.

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Katherine Autin: And he said.

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Katherine Autin: Okay, so.

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Katherine Autin: There's something else going on here.

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Katherine Autin: I think we ought to send you to.

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Katherine Autin: A neurologist, I mean a movement disorder specialist who is a neurologist.

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Katherine Autin: Which I came to learn. I'd never heard of such a thing before. A movement disorder specialist is someone who actually.

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Katherine Autin: Is a neurologist who studies.

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Katherine Autin: As a fellow.

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Katherine Autin: About 2 years beyond neurology and specializes in movement disorders.

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Katherine Autin: This was all brand new to me, David and I had no experience with any of this.

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Katherine Autin: And I guess part of this whole thing is trying to figure out what makes sense.

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Katherine Autin: So he was having things that I didn't recognize.

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Katherine Autin: Ah! He was walking a little bit differently.

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Katherine Autin: Um! He was moving a little slower.

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Katherine Autin: Then I noticed, too, that his.

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Katherine Autin: Beautiful.

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Katherine Autin: Handwriting.

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Katherine Autin: Was starting to get smaller. I was having more trouble, so was he. He couldn't read his own writing sometimes because the handwriting was all kind of squished up, and David used to have this beautiful handwriting that was like a flourish, and he was so proud of it.

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Katherine Autin: Then so.

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Katherine Autin: Here we are. This is like what the 3rd doctor, whatever.

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Katherine Autin: And we're thinking, oh, it can't be anything big.

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Katherine Autin: It's just something little it's to do with the brain. So what's the big deal? We weren't thinking beyond.

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Katherine Autin: Anything other than something fairly normal.

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Katherine Autin: Were we to get a surprise? Yes.

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Katherine Autin: We were.

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Katherine Autin: And honestly.

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Katherine Autin: I think the hardest part about being a caregiver before you have to be a caregiver.

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Katherine Autin: Is realizing that.

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Katherine Autin: You are.

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Katherine Autin: Driving, the train.

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Katherine Autin: The doctors will give you some ideas, but it's.

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Katherine Autin: Kind of up to you to recognize the things you need to tell the doctor.

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Katherine Autin: So I was kind of in my head thinking, Well, what are the things that we need to bring out to the doctor?

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Katherine Autin: Well, as it turns out.

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Katherine Autin: The doctor asks you the questions.

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Katherine Autin: That indicate what that diagnosis might be.

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Katherine Autin: And so.

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Katherine Autin: Folks um.

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Katherine Autin: As a caregiver before I had to be a caregiver.

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Katherine Autin: Now, of course, I was a caregiver for my son. That's a whole different thing. But when you're a caregiver for your spouse.

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Katherine Autin: It's a little bit different. There's a balancing act where you really don't want to cross the line too much.

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Katherine Autin: And some men are very sensitive to having their wives.

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Katherine Autin: Ask the questions, and kind of push the doctor to get the answers.

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Katherine Autin: So in my case.

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Katherine Autin: Um.

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Katherine Autin: My husband was okay with me, kind of driving the train because he didn't think anything of it.

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Katherine Autin: I was a little bit more wary of what was going on, because I was seeing more symptoms.

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Katherine Autin: And.

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Katherine Autin: I still didn't know what this was.

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Katherine Autin: I had no idea.

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Katherine Autin: So you have to remember. This is like 1999, maybe up to 2,000.

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Katherine Autin: And we're getting these results.

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Katherine Autin: Well in 2,004. After all of these various doctors visits, it took 3 years, and.

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Katherine Autin: Back, then.

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Katherine Autin: Um.

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Katherine Autin: It wasn't unusual for that to happen.

00:11:09.000 --> 00:11:10.000
Katherine Autin: But.

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Katherine Autin: Anyway.

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Katherine Autin: We went to the.

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Katherine Autin: Movement, disorder, specialist.

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Katherine Autin: And you have to remember something.

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Katherine Autin: You know, we were both working.

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Katherine Autin: I had my jewelry company. I'm a jewelry designer.

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Katherine Autin: And I've been an entrepreneur since 1982. I've been working.

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Katherine Autin: Building my jewelry business and also working.

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Katherine Autin: To make sure we had money to raise our son, and to do the traveling and fun things we wanted to do as a family.

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Katherine Autin: And so going through this process a 3 year process to get a diagnosis.

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Katherine Autin: I can't tell you how frightening this is.

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Katherine Autin: To think that your whole life is going to be turned upside down, and yet.

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Katherine Autin: You really don't know why.

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Katherine Autin: Or what's coming next.

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Katherine Autin: So my point.

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Katherine Autin: In doing these episodes.

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Katherine Autin: Is to help bring awareness.

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Katherine Autin: And maybe help some caregivers along the way.

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Katherine Autin: Because my husband was diagnosed with Parkinson's in 2,004.

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Katherine Autin: Okay.

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Katherine Autin: And the reality of our lives turned around dramatically.

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Katherine Autin: But what was most interesting was neither one of us had a clue. What we were heading into.

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Katherine Autin: And it wasn't until the doctor started asking very specific questions at the appointment.

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Katherine Autin: With the movement disorder specialist, now.

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Katherine Autin: And this is.

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Katherine Autin: After basically, 3 or more years of going to doctors.

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Katherine Autin: He kept asking him.

00:12:49.000 --> 00:12:51.000
Katherine Autin: When you walk.

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Katherine Autin: Do you only swing one arm? Or have you noticed that you only swing one arm because he was video him? He would video him while he was walking.

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Katherine Autin: And then he said.

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Katherine Autin: Have you ever had anybody.

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Katherine Autin: Ask you to repeat.

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Katherine Autin: What you said.

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Katherine Autin: And I spoke up and said.

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Katherine Autin: I have to repeat his order to waiters and waitresses often.

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Katherine Autin: And he said, Okay.

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Katherine Autin: And then we just went through this whole litany of things, and he did some.

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Katherine Autin: Standard what they call neurological testing, where they do some unique things.

00:13:25.000 --> 00:13:27.000
Katherine Autin: You touch your nose.

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Katherine Autin: Your hand to your nose, your finger to your nose, and then you point it out, and all these other things.

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Katherine Autin: And we were sitting at the doctor's.

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Katherine Autin: With these odd questions he was asking us.

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Katherine Autin: And then he said something that really hit me.

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Katherine Autin: And I think that's when I realized.

00:13:44.000 --> 00:13:47.000
Katherine Autin: It was probably David's 1st symptom.

00:13:47.000 --> 00:13:48.000
Katherine Autin: He said.

00:13:49.000 --> 00:13:50.000
Katherine Autin: Review.

00:13:50.000 --> 00:13:52.000
Katherine Autin: Been losing your sense of smell.

00:13:52.000 --> 00:13:56.000
Katherine Autin: Or do things smell differently to you.

00:13:56.000 --> 00:13:58.000
Katherine Autin: But I thought, and I was like.

00:13:59.000 --> 00:14:01.000
Katherine Autin: Oh, my gosh! When we 1st met.

00:14:02.000 --> 00:14:06.000
Katherine Autin: And well, we married when he was 26, and I was 23.

00:14:07.000 --> 00:14:10.000
Katherine Autin: I remember we went to a restaurant and I'm I'm.

00:14:10.000 --> 00:14:18.000
Katherine Autin: Not good with smoke. I feel like I'm choking and suffocating. For a few days after I'm around somebody smoking a cigarette.

00:14:19.000 --> 00:14:21.000
Katherine Autin: And I remember being at this restaurant.

00:14:22.000 --> 00:14:24.000
Katherine Autin: And I said to David, I said.

00:14:24.000 --> 00:14:31.000
Katherine Autin: Um! The smoke is really bothering me, Babe. We might have to, you know, move and and go somewhere else, and he goes.

00:14:31.000 --> 00:14:32.000
Katherine Autin: I don't smell anything.

00:14:33.000 --> 00:14:36.000
Katherine Autin: And I looked around, and there was somebody smoking.

00:14:36.000 --> 00:14:38.000
Katherine Autin: 2 tables away from us.

00:14:38.000 --> 00:14:40.000
Katherine Autin: Which was not very far.

00:14:40.000 --> 00:14:42.000
Katherine Autin: And David didn't smell it.

00:14:43.000 --> 00:14:48.000
Katherine Autin: And I thought back to that moment, now this is 2,004.

00:14:48.000 --> 00:14:53.000
Katherine Autin: And when we were together and got married it was 1978, and I'm thinking.

00:14:54.000 --> 00:14:59.000
Katherine Autin: Is that a symptom? And he said, that can be one of the 1st symptoms.

00:14:59.000 --> 00:15:01.000
Katherine Autin: Of Parkinson's, and so.

00:15:01.000 --> 00:15:06.000
Katherine Autin: I still hadn't put it all together that my husband had probably had Parkinson's symptoms.

00:15:07.000 --> 00:15:11.000
Katherine Autin: Since, either before we met, or just as we were meeting.

00:15:11.000 --> 00:15:13.000
Katherine Autin: I suspect it was before.

00:15:14.000 --> 00:15:19.000
Katherine Autin: So my purpose in doing these podcasts is to help people not just.

00:15:19.000 --> 00:15:28.000
Katherine Autin: With Parkinson's, but as a caregiver. Some of the things that we need to know before we become a caregiver, and also.

00:15:28.000 --> 00:15:32.000
Katherine Autin: Let's talk about some of the down and dirty things.

00:15:32.000 --> 00:15:33.000
Katherine Autin: Because.

00:15:33.000 --> 00:15:34.000
Katherine Autin: One of the.

00:15:34.000 --> 00:15:37.000
Katherine Autin: Key things that happen to us.

00:15:37.000 --> 00:15:38.000
Katherine Autin: Was.

00:15:38.000 --> 00:15:40.000
Katherine Autin: Kind of interesting in that.

00:15:41.000 --> 00:15:46.000
Katherine Autin: We didn't know anything about Parkinson's, and that's what the doctor said.

00:15:46.000 --> 00:15:58.000
Katherine Autin: And you can read this in my book when it's available it should be available soon. This is toward mid December of 2024, and I'm hoping the book will be available.

00:15:58.000 --> 00:16:01.000
Katherine Autin: In January or February, and close.

00:16:02.000 --> 00:16:04.000
Katherine Autin: But the reality of the book.

00:16:05.000 --> 00:16:11.000
Katherine Autin: Was bringing all these thoughts back to my head like, Oh, my gosh! It's been going on a long time.

00:16:12.000 --> 00:16:14.000
Katherine Autin: And when you think about that.

00:16:15.000 --> 00:16:21.000
Katherine Autin: Who had to share my story, and I hope this helps you. I hope this is interesting because.

00:16:22.000 --> 00:16:27.000
Katherine Autin: When you think I've learned so much from so many people along this journey that we have been on.

00:16:27.000 --> 00:16:35.000
Katherine Autin: And this is only the 1st podcast that I've done ever. So I hope this is of help.

00:16:35.000 --> 00:16:36.000
Katherine Autin: And.

00:16:36.000 --> 00:16:44.000
Katherine Autin: Please. If you have any comments or questions, please leave questions for me. I'll be glad to answer.

00:16:44.000 --> 00:16:53.000
Katherine Autin: And and I can guide people. I'm actually a patient advocate board certified, and a Parkinson's expert.

00:16:53.000 --> 00:16:57.000
Katherine Autin: I just want to help folks through these difficult journeys.

00:16:57.000 --> 00:17:02.000
Katherine Autin: Whether you're dealing with Parkinson's or another neurological condition, don't hesitate.

00:17:02.000 --> 00:17:04.000
Katherine Autin: To contact me, my.

00:17:04.000 --> 00:17:08.000
Katherine Autin: Passion right now is really helping caregivers through a very.

00:17:08.000 --> 00:17:09.000
Katherine Autin: Difficult.

00:17:09.000 --> 00:17:12.000
Katherine Autin: Journeys when their loved ones are dealing with.

00:17:12.000 --> 00:17:14.000
Katherine Autin: Conditions that are.

00:17:14.000 --> 00:17:16.000
Katherine Autin: Life, altering.

00:17:17.000 --> 00:17:19.000
Katherine Autin: And changing your life as well.

00:17:19.000 --> 00:17:21.000
Katherine Autin: As a caregiver.

00:17:21.000 --> 00:17:24.000
Katherine Autin: So I hope this would help.

00:17:24.000 --> 00:17:35.000
Katherine Autin: Like. I said, this is my 1st podcast. So the second episode will be available sometime in January, and it will go up and hopefully. You can follow along.

00:17:35.000 --> 00:17:36.000
Katherine Autin: And of course.

00:17:36.000 --> 00:17:39.000
Katherine Autin: Let me know if you're interested in. When my book comes out.

00:17:40.000 --> 00:17:42.000
Katherine Autin: But I'm just here to help.

00:17:42.000 --> 00:17:46.000
Katherine Autin: And maybe my story will help someone along the way that listens.

00:17:46.000 --> 00:17:50.000
Katherine Autin: If you know anyone that you think could benefit from listening to my story.

00:17:50.000 --> 00:17:53.000
Katherine Autin: This is just the beginning of a very long journey.

00:17:53.000 --> 00:17:55.000
Katherine Autin: Like, I said. He's.

00:17:55.000 --> 00:17:57.000
Katherine Autin: Been diagnosed 20 plus years.

00:17:58.000 --> 00:18:01.000
Katherine Autin: And it's been quite a journey. We've been through quite a lot.

00:18:01.000 --> 00:18:08.000
Katherine Autin: And I want to share that with you. So from here on the the next episodes, I will sometimes read a little bit from my book.

00:18:08.000 --> 00:18:10.000
Katherine Autin: And then have a discussion.

00:18:10.000 --> 00:18:13.000
Katherine Autin: Periodically I will have speakers.

00:18:13.000 --> 00:18:15.000
Katherine Autin: Other caregivers.

00:18:15.000 --> 00:18:16.000
Katherine Autin: And their families.

00:18:16.000 --> 00:18:22.000
Katherine Autin: And we will have experts. Also, I have experts that will really be helpful as well.

00:18:23.000 --> 00:18:26.000
Katherine Autin: So I look forward to hearing from you all.

00:18:26.000 --> 00:18:33.000
Katherine Autin: Please let me know if you've got any questions. If you have a burning desire to ask me a question, don't hesitate.

00:18:33.000 --> 00:18:34.000
Katherine Autin: So.

00:18:34.000 --> 00:18:37.000
Katherine Autin: Signing up for my 1st podcast.

00:18:37.000 --> 00:18:42.000
Katherine Autin: I really hope that you enjoy this, and I look forward to.

00:18:42.000 --> 00:18:51.000
Katherine Autin: Giving you another part of the story with Episode 2 in January of 2025. 0, my gosh, we're moving ahead.

00:18:52.000 --> 00:18:53.000
Katherine Autin: Thank you so much.