Ryan Stark
Ryan shares his love of being creative, debunks some of the myths surrounding diabetes, and about what it's like living with this condition.
More Than Our Story
Lori La Bey
Lori La Bey is an author, speaker, and educator who has dedicated herself to raising awareness of Alzheimer’s and dementia through her work as the founder of Alzheimer’s Speaks, an advocacy group that provides education and support for those affected by these diseases. She’s also the co-founder of Dementia Map, a resource directory for family members, caregivers, and professionals. She also co-hosts the podcast Conscious Caregiving with L & L.
Highlights
Dementia [is] the umbrella term, and is actually a category and not a formal disease. Then underneath that umbrella fall Alzheimer's, Lewy body dementia (LBD), and vascular dementia. There are over 100 of them. But those are the most common ones that we hear about.
Alzheimer's disease: People think of memory loss, but it's executive function, where maybe they can't map out their life anymore, calendar-wise. A lot of times, math is one of the first things to go. As the disease progresses, they may not recognize who you are when they're talking to you.
Lewy Body Dementia (LBD): [People with it] have a lot of hallucinations, but they're on their game most of the time, and people can't tell, but inside, they say that their minds are buzzing in 1200 different directions. They can have issues with temperature.
Vascular dementia: We usually think of hardening of the arteries, you know, maybe smokers, but you don't have to be one. It's more about blood pressure and our blood flow getting to the brain.
You really have to be careful when you get a diagnosis, because a lot of doctors out there still think it's just Alzheimer's… [and] when you do get a diagnosis, remember it could change.
One thing that people really don't talk about, doctors included, is that you could get multiple forms [of dementia], or your diagnosis could change, and your symptoms may even seem to be the same.
When my mom died, she lived with it for 30 years. We were always told it was Alzheimer's, but we had a brain autopsy and found out she had some Parkinson's and Lewy body, and we didn't really see major signs of those things.
You always need a referral from your primary [care physician]. But they're just not on top of the game, because the industry is changing so much.
They used to diagnose [through] a test: Draw a clock, and we'll tell if you're getting the hands in the right position to say it's 2:15. That was a really easy thing that doctors used to do.
Now there are neuro-psych tests they'll do that are quite extensive. They're usually 3 to 4 hours, and you usually have two of them. They can really overwhelm someone in the later stages, when it's evident that something major is wrong, and it can be devastating not only for them but for the family.
They have a blood test now [that] can diagnose Alzheimer's disease, or the potential for you to get it. There are spinal taps and PET scans. So there are a lot of different ways to go about it.
Alzheimer’s: It's really a baby disease. It's only been around for about 100 years.
Many people we are seeing are getting diagnosed younger. Everyone always thought this was an old person's disease… We're seeing people in their 50s, in their 40s, and even younger.
Part of it is because the doctors… still have the belief that it's an older person's disease. So they don't go down that path. Common things [when] you have a brain change, people [assume] “you're depressed,” or “you're going through a midlife crisis.”
People have gotten divorced over not being diagnosed correctly, because it's had such a strain on their relationship. It's a tricky disease; you have to give everybody a little grace.
I talk with people all over the world. They still say it takes 2 to 3 years to get a formal diagnosis once they get into a neurologist, and those waitlists are long, so get in there sooner [rather] than later. Get that referral.
My mom used the term Alzheimer's. We didn't even know where she got that from. She wasn't a big computer person; it wasn't something that was talked about back then. She's been gone since 2014, but she knew her body, she knew something was off, and then when she got diagnosed, it was the typical - here's a prescription, here's an appointment, get your affairs in order; and you walk out the door with no resources. I just thought, where are the other people like us? … Where are the services, products, and tools, and where are the other peeps that we can talk to?
My friends were the ones who encouraged me. I [was] like, “What do I know? I am a daughter. I have no medical background.” I thought, “Okay, I'll try a blog,” and I didn't really even know what a blog was at the time. So I started writing articles, pushing them out to the internet.
All of a sudden, I'm talking to people all around the world and going, “Wow, there's a huge need, and no one is filling this gap of meeting the family need on the level that I thought they needed.” So, I prayed on it a lot, and I decided to take my life savings and my retirement, and [decided] I'm going to make a difference, big or small.
I had no idea what it was going to look like, but I knew that I wanted to raise the voice of those diagnosed; family and friends trying to support them, as well as the professionals and the advocates.
There are interviews I do on the Alzheimer's Speaks podcast where I interview people around the world. There's Dementia Chats™, where I facilitate conversations with people with dementia, and then [there’s] Dementia and the Arts™, where we interview people living with dementia, who do arts.
We seem to focus on what people can't do instead of enabling and encouraging them to do what they can.
People who lived with the disease weren't considered knowledgeable, and that just ticked me off. They are living and dealing with this 24/7.
I wanted people to have choice, and I wanted stuff that was free, so everyone can access this site for free.
On Dementia Chats™, Lori’s webinar series, where the experts featured have dementia:
To me, it was just common sense… You can't fix a problem if you don't know the issues… It cuts through the stigma of what people are supposed to be with Alzheimer's and any form of dementia.
So often with a chronic illness… life changes due to your social circles and people feeling uncomfortable being around you… and there's this isolation that occurs.
The power of people in connection, we have to amplify it, not downplay it.
I'm about quality of life. I think life is much more worth living when you're connected to others, you have fun, and you have a sense of community.
I was lucky enough to launch the first [dimentia friendly community] here in the US. I just thought, “Why aren't we doing this? Why aren't we supporting dementia?”
To this day, every three seconds, someone is diagnosed with dementia. That's a massive statistic. So we're not running away from it. It's you or a family member or a neighbor or a coworker or a friend, sooner or later, you're going to get hit, and why not be prepared? What's good for dementia is good for everybody, because it's just about kindness and being inclusive.
There are just so many different ways we can help people, it's endless... There's no wrong. If you want to help people and be kinder, go for it. You don't need a green light from anyone. Just step up and do it!
Don't give up. There is way more support out there than you have ever even imagined.
If you're ready to go to the doctor, go.
It's about giving people grace and listening, making changes and raising voices, and validating one another… We all deserve good care and feeling a sense of community.
Alzheimer’s Speaks
Find Out How We Can Help You!
Alzheimer’s Speaks is a Minnesota-based advocacy group supporting family caregivers and professionals as well as being a media outlet making an international impact. Our goal is to shift dementia care from crisis to comfort by giving voice to all and raising those voices to enrich lives by sharing critical information, personal stories, resources, products, and tools from people and organizations at all levels around the world.
Dementia Map
Dementia Map Global Resource Directory
Valuable resources for everyone!
Dementia Map© is a FREE GUIDE to the resources needed by those diagnosed with a form of dementia, family members, and professionals providing care or services.
Conscious Caregiving with L & L
From the Producers of Alzheimer’s Speaks & All Home Care Matters
Two of the leading voices in senior health care and everything Dementia are joining forces to help combat, inform, educate, and advise people dealing with everything we all eventually have to deal with – growing old. Lance A. Slatton, a case manager of Enriched Life Home Care Services (ELHCS) in Livonia, MI and host of the award-winning All Home Care Matters YouTube show and podcast, and Lori La Bey, one of the most respected and well-known voices in Dementia care and founder of Alzheimer’s Speaks, will co-produce a new show called Conscious Caregiving with L & L. The new show will take place once a month, featuring leading experts and influencers across the senior care spectrum and will focus on senior care topics and issues.
Daniel
Daniel is an extremely curious person, a wealth of random knowledge and facts. Extremely passionate about a vast array of interests ranging from health to history, science to athletics, everything culinary and the list goes on. Trust us, you would want to be on his team for Trivial Pursuit.
Daniel is also years into his battle with brain cancer. He experienced a seizure while on a Zoom call at work in late 2020 and quite literally, his life changed within minutes. After his operation he started to talk about his story but had always known it was more than just him. From then, More Than Our Story became a PROJECT that has evolved into the starting point it is today.
Additional Profiles
All Home Care Matters Podcast: Daniel Hight
Daniel Hight, joins Lance A. Slatton on his All Home Care Matters podcast to share his journey with cancer and More Than Our Story.
Bob Knuckey
Bob Knuckey, 75-year-young, endurance athlete extraordinaire became a 2-time, age-group IRONMAN world champion this year in Nice, France.
Megan Eckert
Megan shares her transformation from a hesitant runner to the epitome of physical and mental grit, shattering world records along the way.
Capable Dads Podcast: Daniel Hight
More Than Our Story founder Daniel Hight talks on the Capable Dads Podcast about his journey battling his health challenges, recovering, and parenting.
Kevin Culliney
Kevin Culliney advocates for cancer awareness and seeking out second opinions and alternatives. He shares his remarkable story of survival, from diagnosis with stage IV cancer.
Joe Tolles
Joe Tolles is a semi-retired, professional hockey player, CrossFit gym owner/operator, organ donor, and inspiration to others.
Mark Opauszky
Mark Opauszky shares his story of unbelievable resilience in his fight against necrotizing fasciitis.
Nicholas Umali
Nicholas shares his story of persevering through stage 4 cancer and how he views his diagnosis as a blessing that's given him a new perspective on life.
Lyndsey Blair
Lyndsey Blair is an ultra-endurance athlete who in September, became the first Scottish person to complete the Enduroman Arch 2 Arc triathlon.
Carol Schulte
Carol shares how her struggles with mental health led to her founding The Brave Initiative and become the bravest version of herself.
Barrie Shepley
Legendary coach, commentator, and voice of triathlon Barrie Shepley discusses his love for the sport and how he got started.
The Rigid Riders
Steve Iseman and Mike Loghrin are co-founders of the Rigid Riders, a cycling club in the Greater Toronto Area for people with Parkinson's.
Daniel Hight
The inaugural profile is none other than Daniel Hight, founder of More Than Our Story.
Ned Phillips
Ned shares his love for ultrarunning and where his mind goes when faced with the immense physical and mental strain that comes along with it.
Nicholas Whitaker
After his layoff, Nicholas Whitaker co-founded the Changing Work Collective, became a life and career coach, and devoted himself to improving workplaces, leaders and work culture.
Embracing You Podcast: Daniel Hight
Our founder Daniel Hight joins Eric Pothen on his Embracing You podcast to share his story about his renewed fitness journey and his perception of his body.
Mikaela Barnes
Mikaela shares her journey with metastatic adenocarcinoma, her life-changing surgeries, ongoing treatments, and her refusal to let it define what she's capable of.
Jerry Dunn
Jerry Dunn shares his 50-year journey with running, how he used it to reinvent himself, and how it became a platform for social good.
Stephen Glaus
Stephen shares his story of grit and determination of how he battles multiple sclerosis and his journey to becoming a three time IRONMAN.
Ruthie Sloan
Ruthie shares her story of courage and determination as she balances motherhood, trail running, and getting diagnosed with cancer during COVID.
Danielle Patrice
Danielle shares her incredible story of survival against domestic violence and how she now advocates and champions for those who have lost their own voice and agency to this evil.
Lance A. Slatton
Lance A. Slatton is an influencer, thought leader, and healthcare professional who empowers caregivers to navigate long-term care.
Dr. George Ackerman
Dr. George Ackerman advocates for increased awareness of Parkinson's disease in memory of his late mother who passed from this terrible affliction.
Ryan Grant Little
Ryan Grant Little shares his story from serial entrepreneur to angel investor and food tech ambassador. He also talks about his ongoing charitable and humanitarian efforts.
Eric Pothen
Eric shares his story from struggling with an eating disorder, to coaching people to help heal their relationship with food and their bodies.
Brandon Throop
Brandon shares his story, from his diagnosis with non-Hodgkin lymphoma to his aggressive treatment and current remission from the disease. He also talks about his fundraising.
Mark Herbst
Mark Herbst recounts his ‘Epic Ride’ around the world, raising awareness and funds for cancer research in honor of his late wife, Jackie.
Greg Robertson
Greg Robertson shares about his enthusiasm for triathlon, his ambassadorship for the Somersault race series and his goals for 2023 and beyond.
Kieren O’Hanlon
Kieren opens up about his health challenges, and how he is still perfecting the balance of being a loving husband, father and his well-being.
Together For Sharon Interview
Our founder Daniel Hight is interviewed by Dr. George Ackerman for Together For Sharon on how he navigates life with his cancer diagnosis.
Jeremias Mateo
After a life-changing mountaineering accident left him with lasting injuries, Jeremias Mateo refused to let limits define him.
Steve Veasey
Steve Veasey candidly discusses his life, his epilepsy, and how his journey has brought him back full circle to his first love - illustration.
Stephen LaSalle
Stephen LaSalle is a former member of the Canadian Armed Forces, a recipient of the Queen’s Diamond Jubilee Medal, and a para-triathlete, proving that anything is possible.
Tabitha Holman
Tabitha shares her experience with metastatic breast cancer and her advocacy to reform the current standards of care for breast cancer in Canada.
Jillian Best
Jillian Best shares her inspiring journey from liver transplant recipient to becoming a world record holding swimmer and the first transplant recipient to swim across Lake Ontario.
Michelle de Clair
Michelle juggles many roles with pride: mother, wife, volunteer, her career; yet she maintains a humble, quiet resiliency, as a daily reminder of the dangers of COVID-19.
Mark Black
Mark Black shares his remarkable story of resilience, becoming the first person in history to run a marathon with someone else's heart and lungs.
Dr. Caesar Lim
Dr. Caesar Lim talks about his podcast The Capable Dads, where he and his co-hosts discuss topics related to fatherhood in an open and honest way.
John Amanam
John Amanam shares his inspiration for founding Immortal Cosmetic Art Ltd., Africa's leading producer of hyper-realistic prostheses.
Lori La Bey
Lori La Bey is a speaker and educator who has dedicated herself to raising awareness of Alzheimer’s and dementia through her tireless work.
Simon Guérard
Simon Guérard shares his love for ultrarunning, the inspiration behind his YouTube Channel, and where he hopes to see the sport’s future.
Needs Improvement Podcast: Daniel Hight
Our founder Daniel Hight joins Nicholas Whitaker on his Needs Improvement podcast to share his thoughts on the impact of physical health on mental wellbeing.