In today’s episode of the Building A Healthier Edmonton Podcast, I interview Lana Tordoff of the Parkinson’s Association of Alberta.
In todays episode we briefly discuss Lana’s history and how she first became involved with the Parkinson’s Association of Alberta.
Lana shares how many people are affected by Parkinson’s (spoiler alert: it is a lot!), AND more importantly she shares the different strategies and tools that are available to help those who do have Parkinson’s.
While there is no ‘cure’ for Parkinson’s disease, there are many therapies, and tools and strategies that Lana discusses that are able to help those with Parkinson’s live a full and enriched life.
Key Take Aways:
> The majority of people who have Parkinson’s disease do NOT GET TREATMENT!
> Treatment options for those with Parkinson’s can be very effective at enhancing quality of life. In my opinion, there is no reason not to seek out treatment.
> Medication is part of the treatment protocols, but it’s only a part of it!
> Building a strong community and relationships with others who have been where you are now is vital.
> There is no reason a person with Parkinson’s can’t live a full and fulfilling life
> It affects every person differently, although there are common themes and symptoms.
> If you have Parkinson’s disease, or know someone who does, you need to contact your local association. In Edmonton, that is the Parkinson’s Association of Alberta.
Click Here To Access The Full Transcript Of This Episode With Lana Tordoff
Dr. Joe Tanti
On today’s episode, I’m speaking with Lana Tordoff of the Parkinson’sassociation of Alberta. In this episode, Lana shares with us what Parkinson’s disease is, who it affects and the various therapeutic options people with this condition have to live their best life. Lots of information in this episode. I hope you find it useful if you know someone with Parkinson’s or if you have it or a loved one, has it.
Please consider sharing this episode with them. There’s a lot of hope and help for people with Parkinson’s disease. I thought this was a great episode i hope you enjoy the show
Hi everyone. Welcome to the building, a healthier Edmonton podcast. I’m Dr. Joe Tanti and today I’m with Lana Tordoff or Tordoff. Sorry. I’m mispronouncing that. She’s the executive director with the Parkinson’s association of Alberta. Lana, welcome to the show.
Thanks so much Dr. Tanti I’m really happy to be here.
That’s great. So tell me how did you kind of tell me a little bit about yourself? How did you get into into this association?
Yeah, I’ve got a background in marketing and communications. And really a couple of years ago, I was looking for an opportunity where I could be part of a community of support come from, you know, primarily children’s charities in the past.
And so it was a learning curve for me. I didn’t think that I knew anybody with Parkinson’s, but as it turns out I did. And my first day onthe job walked into our training room and there was a gentleman laying on the floor doing stretches, who worked with my dad for a million years. And so it, it the more that you get into it, the more you talk to people, the more you realize that there are a lot more people that are living with Parkinson’s disease than you think that there are.
Yeah, that makes total sense. It’s it’s almost kind of like when you’re that, that phenomenon that happens. If you’re looking for a red car looking to buy a red car, you kind of see it everywhere. So if you’re in a certain environment, then you kind of, and it’s interesting that you’ll notice people that it’s something you never thought about before.
So obviously this gentlemen, so how did you kind of get into the, or, sorry, tell me a little bit about Parkinson’s like, what is it who gets it?
Yeah. So Parkinson’s disease is a degenerative neurological conditionthat largely affects the production of dopamine in the brain. It is considered a movement disorder.
So it affects the parts of your body that you need to control by muscles. And the dopamine in your brain allows you to do that. So this can be, it can present. Your handwriting may become smaller over time. It’s a very simple thing. You may start to lose your sense of taste and smell. Similar to COVID which it’s an interesting thing that happens.
And you may start to find your body moving in a way that you have, you have very little control over you may find that you have a tremor something you can’t quite control in your hand or feet. These are, these are early symptoms and they can be managed quite easily fromearly. Intervention perspective.
The average age of diagnosis is 56. But it does impact people as you know, at any point in their lives, really. We’ve had clients in high school and college but our clients tend to be a little bit older. And the fact is that one in 100 people over the age of 60 will be diagnosed with Parkinsons.
Wow. That’s quite a lot. That’s that’s higher than I initially thought. What are the like long-term ramifications of this? So obviously there’ssome very subtle nuance things that people might be noticing. You mentioned kind of handwriting maybe a mild tremor. How long does that take to kind of.
Progress. And what does that kind of look like over, say a span of it, depending on the person, obviously. But say over like five years, 10 years, if you know, left unmanaged,
generally speaking. Well, it’s an interesting thing because one of my colleagues always says, if you’ve met a person with Parkinson’s, you’ve met one person with Parkinson’s, it looks different.
It feels different for everybody at progressive, right. It is a disease youlive with. In, in reality, it’s not, it’s, doesn’t actually it’s not shown to reduce your lifespan different than, than, you know, any other kind of part of your life. However, it can make your life challenging. You know,it’s very easy to retreat into yourself and to hide because it’s much easier to hide than it is to explain the things that your body’s doing without.
Without your control, if left untreated, well, I mean, one can, can again, probably hide a retreat. This is it’s something that happens thatbecause there’s a, there’s a bit of a stigma around you know, appearing intoxicated, for example, that can be a thing that happens. And so there are really good treatments, solid treatments that can help you right from the onset that really delay the progression of the disease.
And. Well, interestingly enough, the combination of medications and taking care of your movement and staying active, those are the thingsthat really will keep you healthy longer. When I think about chiropractic service or support physio support we, we don’t, we’re not motivated to move if we don’t feel good.
And so taking care of the pain points in our, in our bodies that means that’s very important for people with Parkinson’s because we have to stay moving. If you stop moving. You start being able to move. And and that becomes the biggest challenge for people living with Parkinson’s and really their families as well.
Because you think about whether you’ve got kids at home or, or adult children, your spouse , you need help at some point, you’re going to just need help. And so making sure that you take care of yourself and stay motivated and stay active, those are the most critical things for people with.
Well, you’ve hit on a multiple different topics here.
I don’t know if they’ll be able to dive into all of them. But I think just to summarize it’s multifaceted condition but the, from what I’m hearing, the main takeaway is is that it doesn’t impact your lifespan at all. It’s really about managing this condition. And there’s a lot of things that you can do, which you just kind of illustrated some of those to really give you the best quality of life.
Just like everyone else and or someone who doesn’t have Parkinson’sthey want to be able to do the things that they want to be able to. For as long as possible and similar with people who may have Parkinson’sthat doesn’t just because you have it that doesn’t, it’s not like a life sentence, like you’re you can’t do anything.
I’m sure you’ve you obviously met a lot of people with Parkinson’s that live full, healthy lives. And I know I have several patients in the past that the same thing for them. What are some exercises that you find to be helpful or possibly the most helpful for people as they’re getting older.
And they’re dealing with these Parkinson’s type symptoms and this disease.
Well, there’s so many, and there’s really fantastic studies worldwide. We’ve, we’ve got a great boxing program out of avenue box and here in Edmonton and our participants in that program reports a reduction of their symptoms or, or that their symptoms disappear for a span of four to eight hours after they go in and participate in their boxing program.
Well, dancing cycling we’ve got a really active group out of the McKennan center in Edmonton who does circuit training. So. It really is about finding what’s right for the individual. And when you stop thinking about moving sometimes like with dancing, for example, you stop thinking about it, then it’s it, it becomes easier to do.
We have there’s one of the challenges of people with Parkinson’s. That suddenly your body just stops. It might be walking down the street and you stop and you tell your body to move. You tell your bodyto take the next step and it won’t do it. And so we tell people to sing to yourself start singing a song and don’t think about the next step.
Think about what’s beyond. And then that helps people you know, start to move again. And so it really is that you come to learn all of these little tricks, trick your body into going forward. And that’s part of what is really helpful when you connect with other people living with Parkinson’s because you then learn some of the tricks that they’ve learned along the way.
And it’s also, you know, it’s that critical element of social support and getting out and not you know, not limiting yourself. Not, not giving into the desire to be secluded.
Yeah, absolutely. I think like a lot of different conditions, whether there are neurological conditions or there say you’re having some type of pain problem or inability or difficulty moving your body is that as you’ve illustrated a couple of times, it doesn’t affect just your bodyaffects really your mood affects your psychology.
And that has an impact on not only you, but your surroundings, your, your neighbors, your family members people that care about you. So it’s really like, it sounds like your association that they really come, come at it from a holistic perspective. And not just trying to manage the condition, but actually.
Coming at it from multiple angles, from the getting him moving from engaging, you getting more active engaging with other people so that, that community aspect and really motivating. And that will change that. That’s psychology, maybe thinking,
so yeah, you really can
live well. And that’s really what our organization is about is living well longer.
And of course, like every person you’re going to come to a point where some of these things are harder than they used to be. And you require more support and work here and we’re there for that as well. But it, this is a natural part of aging and everybody has to go through it at some point.
And so you know, when you have people around you that know what you’re going through, or that know what your, your spouse or your partner is going through, its helpful..
Absolutely. I have patients and a very common theme I hear in the office. So I’ll ask you, how are you doing? And they just say, well, we’re getting getting old.
So I haven’t communicated withPonce De Leon recently. He’s not letting me know where the fountain of youth is. By the time I’m still trying to look and when I know I’ll let you know, and you can let your members know but don’t hold your breath on any of this. Yes. What, what would you say is your both for your clients and members and your association?
What’s your biggest obstacle you guys are trying to overcome now?
Seclusion. I mean, I think everybody is feeling a little bit isolated over the last two years through COVID. For a population that feels isolated anyway, it has become sort of exponentially more challenging. And somaking sure that people, so as an example, we’ve spent, you know, over 200 hours teaching people how to use zoom so that they can stay connected with both us and, you know, other members of their family over time.
Really it’s, it’s an attitudinal thing, I think, where If you, if you are committed to helping yourself, then that really makes a huge difference in the outcomes of your condition. Many of our clients and,you know, they slightly skewed towards men. Men are fixers. They’ve tend to be, they want to, they, they want to be the ones who, who take care of things who come to the rescue.
And so it can be very hard for them to admit that they need help or that they need support. And, and that’s where. They’re partners comein and and encourage them and push them. But then of course, they’re, they’re worried about their partner because it can be hard on them as well. So it really is important for all members of the family to get involved in, stay connected.
If it does make a huge difference, a client came in over the holidays and they happen to be in the office. And he made a donation to the organization and I said, I, you know, thank you so much. And we had areally good conversation and he said, you know, Lana, this place is mysecond family. And it really it goes to show that you can receive a diagnosis that feels like a condemnation inside.
But it can really present as an opportunity. And so that’s that there is hope in that, and that’s really what we’re trying to put up there.
Okay. Yeah, that’s great. There is, there are solutions. Sometimes it’s not a fixed quote unquote, fix it, but there’s definitely things you can do to help manage and live your best life.
What would you say to someone who may perhaps. I think that they may have Parkinson’s or some type of Parkinsonian type of symptoms, but they’re, you know, they’re scared. They don’t want to either admit to themselves or to their loved ones or to their family thatthey may have this type of condition.
And so they don’t want to go see their doctor. They don’t want to get it treated. Because again, then they have to admit to themselves that they have it. What would you kind of say to that person?
I would say that I understand. I think we all do to some degree. It’s noteasy to, for somebody to tell you that you have a condition that’s not curable that there’s no question. I’ve had some people say to me that they got their diagnosis, their diagnosis, and it was thank you God moment, because it could be so much worse.
And then there are other people who are just absolutely devastated and until they know more and learn more that devastation can kind of that it can really hamper their progress in their success in their own lives. The worst thing that can happen is if you don’t receive a diagnosis or treatment that your symptoms get worse over time, and you could become increasingly apathetic and removed from life, those are the things that are going to hurt your family and yourself more than anything else.
I totally agree with that. I used to treat some patients in a the residents independent living or. Assisted living buildings. And you’d see some people that may or may not have had some type of like Parkinson’s for example, but you saw some people that were vibrant and they were, they were doing stuff.
They, they had a purpose. So, you know, they’re able, they’re quite able and they’re living a fulfilling life and then you’d see some other people and. Quite the opposite, kind of just what you described. Theybecame really apathetic. They didn’t want to do anything. And like you said earlier because they didn’t do anything, they really lost the ability to do things.
The, you don’t use it, you’ll lose it kind of phrase comes, brings the bell. And I feel that comes more and more true. The older and older you get. So it’s really important to you know, take care of things as they come up. So you have the best ability moving forward. How can people get ahold of you or get connected with you or, you know, give some donations to your associations.
What’s the best way for them to do.
No, probably there are websites. So Parkinson association.ca. We alsohave a one 800 number that you can find there. We are a provincial organization. And we, the sort of the first thing that we do is to try and, you know, give you some sense of what your expectations can be.
Quite often, we’ll, we’ll receive a call and the person has just received the diagnosis from their. Or, you know, have seen a neurologist and they get a prescription and are told to go along their Merry way. That, that leaves a lot of unanswered questions. And you could go down therabbit hole of the interwebs, but that’s because it’s, it, there’s so many people who will.
Well, there’s just, there’s a lot of content, but you can find, and boy, that can be intimidating. So if you talk to one of our clients services coordinators they’re able to kind of give you a sort of snapshot so that you feel like you’ve got some knowledge and some information tomove forward with.
We also do something called PD 1 0 1, and this might be of interest to some of your clients. So where. It’s really for newly diagnosed folks orpeople who suspect that they might have Parkinson’s and it just givesthem a little bit of an overview of what Parkinson’s is and what they can expect over the course of their lives, as well as an opportunity to talk to the other people who are registered in the program and learn about their experiences as well.
And that can be super informative and, and give you a bit of a peace of mind that that helps you feel better about the direction that you’re going.
Okay, great. Yeah. We’ll definitely take a look into that. Is there anything else that you’d like to mention or that I haven’t asked you about?
I don’t think so, but you know, I think, you know, if there’s a message to be.
Delivered it’s that there is hope, as I said there’s there are called there’s really amazing quality of life research happening all the time. Including here in Alberta, there’s a robust research community here. There’s an opportunity to get involved in some of that research and see and learn what’s right for you and, and what works for you and your family.
And you’re not alone. There’s, there’s a, there’s a whole lot of people out there probably. Just would love to talk to you whether it’s peer support or one of our staff it’s important to read.
Absolutely. Yeah. So if, if, if your listeners, if, if you, or you know, anyone that is has Parkinson’s or is dealing with a Parkinson’s diagnosis, please reach out to Lana and her team at the Alberta Parkinson’s association.
They were going to be, they have a lot of resources for you. She mentioned. Don’t necessarily trust everything. Dr. Google says I feel that it doesn’t necessarily give you the best information or the most reliable for you. It’s more really giving you the information. Best optimize for the search engines.
So maybe not the most reliable so get that information from the experts and Lana and everyone over at the Parkinson’s association of Alberta. Well, Lana, thank you so much for your time and everyone thank you for watching or listening. And we’ll talk to you again next time.
Thanks so much. Take care.
You too. Thanks.
Hey there. Thanks for watching or listening to today’s episode. Uh, please consider giving us a like, or a thumbs up or subscribing to the podcast. Uh, just helps spread the word. So we’re able to help contribute to building a healthier Edmonton. I hope you have a fantastic rest of your day and we’ll talk again next time.
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