10thirtysix
Alzheimer's Awareness Month
Season 7 Episode 11 | 26m 46sVideo has Closed Captions
November is Alzheimer’s Awareness Month
November is Alzheimer’s Awareness Month. Meet a Delafield woman who decided to participate in a four-year study at UW Health after her father died from the disease. The study looks more closely at the drug Leqembi, recently approved by the FDA. The move marks the first time that a drug meant to slow the progression of the disease has been granted full regulatory approval.
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10thirtysix is a local public television program presented by MILWAUKEE PBS
10thirtysix
Alzheimer's Awareness Month
Season 7 Episode 11 | 26m 46sVideo has Closed Captions
November is Alzheimer’s Awareness Month. Meet a Delafield woman who decided to participate in a four-year study at UW Health after her father died from the disease. The study looks more closely at the drug Leqembi, recently approved by the FDA. The move marks the first time that a drug meant to slow the progression of the disease has been granted full regulatory approval.
Problems playing video? | Closed Captioning Feedback
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Learn Moreabout PBS online sponsorship(bright music) (upbeat music) - Welcome to "10thirtysix," I'm Porsche Young.
We begin with some hopeful news about Alzheimer's disease, something 6.7 million Americans are currently living with in 2023.
There's a study going on in Madison that could lead to finding ways to delay or even prevent Alzheimer's disease.
And the town of Delafield woman is involved in the latest research.
"10thirtysix" takes you on her journey.
- Attention, C Blue Chip competitors.
We are approximately a little less than 20 minutes to planned warning, 20 minutes to planned warning.
- [Portia] Marilyn Krause dedicates her time to sailing as a race official, including for this regatta on Okauchee Lake in Waukesha County.
- 10 minutes to planned warning.
My husband Larry, started sailing when he was nine years old.
So it was really one of the passions of his life.
And as a result of that, I learned all about sailing.
Someone says, what do you need to do to run a signal boat?
I always say, you need to be able to count backwards from 10.
10, nine, eight, seven, six, five, four, three, two, one.
(horn blaring) - [Portia] Marilyn also dedicates her time to another role in her life, one that could impact her health.
She's a participant in a study that could prove to be a major breakthrough in the treatment of Alzheimer's disease, the most common form of dementia.
- [Marilyn] After I lost my husband to cancer and knowing how important research has been to that, I thought, well, I really can't do anything about cancer or what killed him, but maybe I could do something here.
- [Portia] So once a month, Marilyn travels to Madison because she qualified for a four year commitment called the AHEAD Study at UW Health.
She's a year and a half into the study under the guidance of Dr. Cynthia Carlsson the Chief Investigator for the research, and a Professor of Medicine in the University of Wisconsin School of Medicine and Public Health.
- Hi Marilyn, how are you?
- Doing okay.
- Yeah, good, good.
- The AHEAD Study is a study that's really aiming to see if we can prevent Alzheimer's in people whose thinking abilities are normal, who have no symptoms of memory loss, but who have a buildup of a protein that's called amyloid and causes some plaques, which are just sticky deposits that get made into the brain.
- In some studies, they are looking at people who do show some decline, but so far I'm not in that category, I'm glad to say.
And they were looking for, the two main criteria were people 65 and older, or people 55 and older who had someone in their family or a family history of dementia or Alzheimer's.
So I qualified both ways.
- [Portia] Marilyn's father Art, died from Alzheimer's in 2018, at the age of 88.
- He was the 10th of 10 boys.
Keep in mind that my dad lived longer than any of his brothers did.
So I don't know if anyone would have developed Alzheimer's because most of them did not live into their eighties.
I'm not really sure exactly when my dad was diagnosed with Alzheimer's, but it was a slow progression.
He died in 2018.
I have to say that we noticed things at least 10 years prior to that, and we would always talk about my dad being absent-minded.
We didn't notice it as a pattern or anything for quite a while.
He never totally lost his speech or anything like that but he would really struggle to come up with words or phrases and we could tell he knew what he wanted to say and he just couldn't get it out, which was really frustrating.
But I think we all knew something was happening, but we didn't really know where it was going or how quickly it would progress.
My dad was well aware of what was happening.
He knew he was struggling with names and so on and words.
He started struggling with cooking and baking, which obviously was something he really loved.
I mean, my dad was a chef.
My dad was, I think about 48 when he finally had his own place called Maniachi's Cafe Siciliano.
And they were there for almost 24 years until they retired.
He would cook, I think less often.
Our reaction among the eight of us was just really concern.
And the last three to four years before he died were the really most difficult ones for my mother, 'cause she was his caregiver and they were devoted to each other.
He was her main focus, to the point where she wouldn't really take any help.
My parents were married for 67 years.
They died within three months of each other.
What I learned from watching my parents go through this was that it's really hard to keep yourself from making suggestions that they don't want.
So there's this dynamic that's ever changing.
(peaceful music) - [Cynthia] We'll do a brief physical exam, just have you keep your head still, but move your eyes to follow my finger.
- [Portia] What's changing now could be very promising for someone like Marilyn, according to Dr. Carlsson.
= So this study builds on data that we know from other studies where this past year we've had really exciting news and that this medicine called lecanemab, or LEQEMBI, was the first drug approved by the FDA to receive full approval to treat people who have mild cognitive impairment and dementia due to this buildup of this protein called amyloid, that actually heightened the excitement around the AHEAD study because it made it much more likely that this study would show some promising results.
It's still not for sure, that's why we have to do these studies to see if they really do help prevent the onset of Alzheimer's.
But if it does show that, it would be one of the first trials to really show that there's a way to actually prevent Alzheimer's disease.
- [Portia] Marilyn found out that she has intermediate levels of plaque, - [Marilyn] Which is really common.
- [Portia] So she undergoes the research procedures every four weeks.
Participants with higher levels go through it every two weeks.
Dr. Carlsson points out that a person can have intermediate or high levels of amyloid in their brain for decades and never be diagnosed with Alzheimer's dementia.
She says research is trying to identify why some people progress and others do not.
In the AHEAD study, all participants undergo quite a few tests.
- All right, now I'm just gonna check strengthen your arms.
If you can put your arms up like this.
- When we line up appointments, they tell me what I'll be getting at each point.
There's a physical, every time I go in, at certain intervals there'll be a more extensive physical exam where I'll get an EKG and then less frequent as time goes on, MRIs and CT scan.
Then there's the dreaded cognitive testing.
(Marilyn chuckling) - [Researcher] Begin here and fill in as many squares as you can, one after the other without skipping any.
- Which is always a struggle 'cause you know it's coming and you know, you hope you've got enough sleep the night before and that you're really sharp because you don't wanna, you just don't want to feel or have it be obvious that you're kind of losing it, so.
- [Researcher] Ball, flag, tree.
Now repeat those words back to me.
- Ball flag tree.
A lot of it is memory, but it's also hand-eye coordination.
And they'll show you a shape and they'll ask you to duplicate it with paper and pencil.
- [Researcher] Please copy this.
- [Marilyn] A lot of it is testing your memory and your thought process and critical thinking, things like that.
- [Portia] Then comes the infusion - Of the placebo or the drug.
- [Marilyn] I started the infusions in April of '22.
- [Narrator] Marilyn won't find out if she's actually getting the drug until the end of the entire trial, when everyone has completed their four years, she will have another brain scan about two years into the study.
And at the very end.
- What I'm hoping for with this study then is if we can step back while people are doing fine, thinking clearly, living active full lives, and start this therapy at a point where they're at a good cognitive level, their thinking abilities are strong, they're not having any symptoms, and then keep them there longer.
That's really what we're hoping for.
- So you just never know when something that you're involved in is really gonna be helpful, not only to yourself, but to other people.
If this study would prove that Alzheimer's could actually be prevented, that would be big.
- If we can push back the onset of Alzheimer's 20 years, so we have 20 more years of good thinking, interaction with our families, getting to our grandkids weddings or high school graduations, that would be very, very meaningful.
And I think we'll get there.
- Here's our leader.
Bravo one.
(horn honking) - [Portia] Just like finishing a race, Marilyn hopes she can help the AHEAD study, cross the finish line with positive and impactful results.
- If I say I am going to do something, I'm going to follow it through.
What a finish, they're all close.
- Dr. Carlsson says she's happy to hear about Marilyn's involvement in sailing.
She says, physical and mental activity like that has been shown to help protect the brain from cognitive decline.
Our mental health is definitely important.
That's why we want to continue our conversation about the issues many are facing.
And as the holidays approach, many see this as an exciting time.
Others see challenges ahead.
According to the American Psychological Association, over 38% of those surveyed felt increased levels of stress, depression, and anxiety and reported more substance abuse during the holiday season.
Joining me now to talk about coping during the holidays is Jennifer Smith, a Clinical Supervisor with NAMI, the National Alliance on Mental Illness.
She's also an outpatient psychotherapist.
Thank you so much for being here, Jennifer.
- Thank you for.
- So we're gonna start with the first question.
Those who are already facing serious mental health issues, getting through the holidays, what can they do for themselves to try to cope?
- You know, reaching out if they have a therapist, reaching out, making a plan with their therapist, but really focusing on their routine.
What helps them most cope with their mental health?
Looking at those strategies that they already utilize and really being mindful of how they help and making an intention to use them, are the the most important things that they can focus on.
- What can the loved ones do to help them through?
Because I feel like that's also a point of tension where a lot of loved ones don't know what to do or the right things to do.
- Well, and there's no right or wrong things.
A lot of times individuals, with any individual, but you know, individuals with mental health conditions need to be heard and so being willing to listen and not fix, but hear them, be there for them and not try to have all the answers, but instead say, how can I support you?
If they're not certain how to support, can be really helpful.
- What if the person can't answer that?
- Giving space, being okay with the decisions that they make, recognizing that they are their own person, can make their own decisions, even if you don't agree with those decisions.
Just trying to be respectful of what they're doing.
As hard as that can be, the biggest thing is to listen and not fix.
- That's a really good advice because I think a lot of people just wanna go in and try to solve their problem for them because that's what human nature is.
But a lot of these things will take time and it definitely takes the self-awareness to know that.
- Yes, absolutely.
- So holiday traditions, we already know that the holiday traditions can be stressful.
People always try to keep them even though they're facing periods of stress.
What can we do to try to keep the pressure off of us during the holiday season?
And this is even people who aren't facing mental health issues.
- Absolutely.
Being willing to be flexible, if whatever is going on is causing increased stress, being willing to take a step back and having that flexibility, recognizing that there is no such thing as perfect, and if something is not fitting in right because of our mental health or scheduling or whatnot, saying that that's okay, let's do the best we can.
Being kind to ourselves about it.
A lot of times we put pressure on ourselves to have things look and appear certain way per some standards that we don't even know necessarily where they came from.
And so being able to say, well, I can do the best that I can, but I can only do what I can do.
I can't be perfect.
There is no perfect.
And if something isn't going the way that we want it to, being able to take a step back and saying, what's the reason I'm holding onto this?
- So that quest for perfection.
Has social media enhanced that desire?
- Absolutely.
Social media, media in general just kind of paints a picture of what we think things should be like and that is going to lead to feelings of guilt.
And so what do, you know, Really exploring what do I need, what do I want and how do I be okay if my needs and wants don't line up?
But really trying to be aware of that word should and how unhelpful it is and trying to minimize that, there is no should or should not.
It's the needs and the wants.
- Okay.
Well, we all know we just changed the clocks back an hour.
The effectiveness of of the daylight getting shorter and shorter, and that's just how earth goes.
- [Jennifer] Yes.
- But do we sometimes underestimate seasonal effectiveness disorder?
Do we not realize not having as much sunlight as we had, does that have a real impact on your mood or depression if you are facing those symptoms?
- Absolutely.
The less vitamin D we're getting can mimic some of the symptoms of depression.
So I often encourage people to check in with their primary doctor, get their vitamin D check level checked, make sure they don't need some kind of supplement because we are getting less vitamin D. But also just the shorter days can result in us changing our routine.
And we are creatures of habit.
And so when our routine starts to change, that can impact our mood and our mental health much more than we recognize.
And so really also trying to maintain our routine the best that we can.
Even looking into things like light therapy, when the sun isn't as bright, doesn't mean we're not getting vitamin D. It's just not as much because of the clouds and whatnot that is happening, the dreariness, and so looking into things like light therapy or even maximizing the time that the light is out by getting out and absorbing some of that light for 10 minutes a day, five, 10 minutes a day, you know, we get cooped up in the house because it's cold too, especially here in Wisconsin.
And so taking moments to step outside and try to get whatever light is out there.
- Another after effect of the pandemic is the issues with mental health and the profound impact that it had really on all of us, all of the global community.
Going through this, are we seeing any lingering effects on people's state of mind coming out of COVID, even though we're still very much in it with flu season around us?
What are the after impacts of COVID on people's mental health and how we've been able to deal with it as a society or as individuals?
- You know, there's a lot of different effects of it.
The isolation is still there for some people.
The routines that they got used to during COVID, being able to go try to fit on, changes going back to the way things are.
Some people not being willing to doing that and some family members not understanding that.
And so ultimately I think it's respecting wherever you are, trying to manage through some of the anxieties that are happening as a result of not knowing, you know, what is, what you're comfortable with, what you're not comfortable with.
Just kind of taking stock in where you are, not judging other people for where they are, but really trying to work through what's best for me and how do I respect that even if other people don't agree with it.
And how do we support each other when some people in our lives have different views or different needs that resulted from the pandemic are just brought to light even more of what those needs are.
- And the holidays do bring up those familiar memories.
And a lot of people lost people.
- Absolutely.
- During the pandemic.
So how do you deal with that grief of loss, of losing that loved one?
- Feel it, give it space.
A lot of times we try to avoid uncomfortable feelings with various ways of unhealthy coping.
And so really just trying to honor those individuals and honor the feelings we have about them.
Grief is a very complicated emotion.
It will wait for us.
And so if you're avoiding it will linger, it will stay there.
And so really just trying to give it the space that it needs by being felt and respecting that those individuals need to be honored as well.
Thank you Jennifer.
Jennifer Smith from NAMI.
Thank you so much for telling us how to kind of deal with the mental illness and the holidays and being able to cope with some of the traditions.
Thank you for being here on "10thirtysix."
- [Jennifer] Thank you.
Portia.
(upbeat drumming) (singing in foreign language) - November is Native American Heritage Month.
It is a time to celebrate traditions, languages, and stories of native peoples.
The Menominee tribe is the largest in Wisconsin.
We want to pay tribute to someone from the Menominee tribe who became a legendary civil servant and scholar, Ada Deer.
(peaceful music) - [Narrator] Ada Elizabeth Deer born August 7th, 1935, grew up in northeast Wisconsin in the small town of Keshena, on the Menominee Indian Reservation.
She and her family of seven lived in a log cabin near the Wolf River.
- [Ada] I liked where we lived.
We had a very nice log cabin but it was a little small for that many kids and parents and oh, assorted cats and dogs every now and then.
(Ada laughing) I learned the love of the land, but it was a hard life because we lived in a one room log cabin with no running water, no electricity, an outhouse.
- [Narrator] Ada decided early on that she would devote her life to helping others.
She didn't like the way things were, so she set out to change them, especially for those in the Menominee tribe and other Native Americans.
- [Ada] I decided that no, I am not getting married and having children because there's millions of women on the planet that have to do that and lots, too many people choose it, And I'm going to study and do and be and accomplish some, and do something which I've been able to do.
- [Narrator] With a scholarship from her tribe, she attended the University of Wisconsin in Madison.
She was the first member of the Menominee tribe to graduate with a bachelor's degree.
(upbeat music) Deer came to prominence in the 1970s when she moved to Washington D.C. to lobby for the end of termination.
In 1953, Congress passed the Menominee Termination Act, ending the tribe's status as a federally recognized sovereign nation.
In 1971, thanks in large part to Ada's effort, President Richard Nixon signed the Menominee Restoration Act, returning sovereignty to the Menominee Indian tribe of Wisconsin.
Because of her activism and public service, she was elected the first female chairperson of the Menominee Tribe.
In 1978 and 1982, Deer ran for the Secretary of State in Wisconsin.
She lost both times.
In 1992, she won the Democratic nomination for a seat in the House of Representatives.
At her celebration, she said this famous line.
- I've been waiting a long time to say this, me nominee.
(crowd cheering) - [Narrator] She ended up losing that race to incumbent Scott Klug.
Arguably her greatest accomplishment was serving as the first woman head of the Bureau of Indian Affairs during the Clinton administration.
She lived a long and accomplished life of firsts.
- [Ada] I've been the first American Indian in a lot of things.
First woman, first Indian, first social worker.
You know, first, I just go through life being the first.
Not because I aim to do it, it just kind of works out that way.
I care about people and I can't, I don't accept injustice and I wish I could do more.
- [Narrator] Ada passed away on August 15th, 2023.
Just eight days after her 88th birthday.
A memorial was held in her hometown of Keshena, to celebrate her life and legacy.
Friends, family, and other notable dignitaries gathered to share cherished memories and pay their respects.
- So eventually I graduated from college, she pushed me and got me, got me done.
And then I actually became a Commission Officer in the US Coast Guard.
And so Ada showed up at my ceremony from Officer Kennedy School and she walks up to the four star, the Commandant to the US Coast Guard.
And I'm like, oh wow.
There's, is making a beeline for the head guy.
(audience laughing) I've been in the Coast Guard like one day.
(audience laughing) And she goes, "See this guy over there?"
His last name's Deer, remember him.
Fear the deer, you know?
And it was just, she just walk up and talk to this guy.
And I was like, oh my gosh.
All my classmates were looking at me like, who is that?
Do you know her?
No, I have no idea.
(audience laughing) - We're forever grateful and better for having lived in a world that got the benefit from Ada, her heart and her determination.
And you know, bottom line for me as governor and just in my regular life, Ada was a friend to Kathy and I, and we miss her, thank you.
(peaceful flute music) - Ada was frequently honored for her public service to our great nation.
And she had many roles in her life.
She was a distinguished educator, social worker, and trailblazer in the field of Native American rights.
She was also a beloved mentor, leader and friend.
But most importantly, she was (speaking in foreign language).
She was Menominee.
When I think about Ada, I think about the Menominee tribe.
She made sure that the Menominee people had a voice, and then she encouraged that next generation of leaders to make sure that we had a voice.
Make sure that Menominee people were gonna be heard.
(peaceful flute music continues) - And each of us has doors in our own lives, and Ada has opened those doors for all of us.
So all of us now have to ask, what will we build?
Who will we hold?
What doors will we go through?
That's how we honor Ada's legacy.
That's how we honor her gift to us.
May we rise to that moment, the way that Ada rose to every moment in her own life.
(peaceful flute music continues) - A true icon, for sure.
Before we wrap up this edition of "10thirtysix" we want to pay tribute to another group of people, our military veterans.
If you haven't already, please watch our newest documentary on Milwaukee Soldier's Home, "A Hallowed Home for Heroes."
It's on our YouTube channel or you can watch it November 20th at 9:00 PM or November 28th at 7:00 PM here on Channel 10.
Milwaukee County is paying tribute to our veterans with Operation Green Light for Veterans, through the month of November.
A number of buildings are lit up for our veterans.
And remember, you can thank a veteran for their service or simply put a green light on your house to show your support.
Thank you for watching "10thirtysix," we'll see you next time.
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