The Paid Leave Podcast

Living With Early Onset Alzheimer's Disease and Living Your Best Life.

• The Connecticut Paid Leave Authority • Season 3 • Episode 21

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This is an exciting time for anyone suffering from early onset Alzheimer's disease.   A new drug that should get FDA approval by the end of this year, would expand the treatment options for the more than 6 million Americans of all ages who have Alzheimer's. The disease is the fifth-leading cause of death for adults over 65. Donanemab, a drug developed by Eli Lilly and Company, showed promising results in clinical trials. The drug eliminates brain plaques associated with Alzheimer's. Studies show the drug could be a breakthrough in treating early stages of the disease, slowing cognitive decline in those with early symptoms.

Joe Montminy is a patient advocate who is living with younger onset dementia and is currently serving on the MA/NH Alzheimer’s Association Board of Directors and the New England Alzheimer’s Association Early-Stage Advisory group. He used to live in CT and was diagnosed at 54 years old, it took 3 years before he could get a correct diagnosis. Joe says he is optimistic that this new drug and exciting new blood testing to get an earlier diagnosis, is going to make a big difference. Joe keeps a very positive attitude and finds comfort in a support group.  Kristen Cusato is the Director of Communications for the Alzheimer's Association Connecticut Chapter & she is a New England Research champion. Kristen thinks that education is key and knowing the early signs of the disease, which can lead to an early diagnosis and treatment. She believes people like Joe can help with his advocacy, but more importantly he can bring hope with his story of struggle with early onset Alzheimer's disease.

To get in touch with the CT chapter of the Alzheimer's Association: Connecticut Chapter (alz.org)

To get information or to apply for benefits: CT Paid Leave

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Nancy Barrow:

Hello, Connecticut and welcome to The Paid Leave Podcast. The title basically says it all. I'm Nancy Barrow and I will be delving into this new state program and how it can help you and your family. This podcast will give you information you should know about Connecticut Paid Leave, and maybe just a little bit more. Connecticut Paid Leave brings peace of mind to your home, family and workplace. Welcome to The Paid Leave Podcast. 6 million people have Alzheimer's disease, about 80,000 people aged 65 and older in Connecticut have Alzheimer's and by 2025 91,000 are expected to have it. Alzheimer's is a chronic health condition and Connecticut Paid Leave can help. Connecticut Paid Leave helps patients and caregivers with 12 weeks of income replacement. You can take it all at once in a block or intermittently for treatments like doctor's appointments. And there's a reduced schedule where you can still work but maybe not a full day. It also covers addiction treatment and mental health appointments. And you can take up to 12 weeks of income replacement in one calendar year. My guests are Kristen Cusato, she is the Director of Communications for the Alzheimer's Association Connecticut Chapter and New England research champion. Thank you so much for being on the podcast Kristen.

Kristen Cusato:

Thanks so much for having me.

Nancy Barrow:

And Joe Montminy who is a patient advocate who's living with younger onset dementia, and is currently serving on the Massachusetts and New Hampshire Alzheimer's Association Board of Directors and the New England Alzheimer's Association Early Stage Advisory Group. Wow, that's a lot. Thank you so much for being on the podcast, Joe.

Joe Montminy:

Well,Thank you Nancy I appreciate you having me on the show.

Nancy Barrow:

Well I think you being here and agreeing to tell your really important story about your life with early onset Alzheimer's, you're brave and courageous. And you're really making a difference with all the advocacy that you are doing. So thank you so much, again, for being on this podcast. I think your story is a really important one.

Joe Montminy:

Thank you. I'm glad to be able to share my story with your listeners and help them understand what it's like to go through it. But also, the value that programs like the Connecticut Paid Leave can offer families and individuals living with the disease. Because having that paid leave is huge. It really does make a difference.

Nancy Barrow:

So why don't you tell me your story? What was it that made you decide that hmm something's not right.

Joe Montminy:

I'll just give you a little bit of background. Now. Today, I'm I'm sixty year old today. And I was actually diagnosed six years ago with younger onset Alzheimer's disease. And prior to the onset of the disease, I actually had strong analytical skills and was actually subject matter expert in my field. I did market research in the individual US annuity market, which their retirement products, and I use that information, I go out and do presentations on the current state as well as the future of that market, both financial services companies at conferences, mostly in the US, but some also like Canada, Asia, South America, but I started to see some warning signs, you know, it was taking me 30- 40% longer to complete, some were asked that I had done a few years earlier, of having to write down like all kinds of notes, just to help me remember, like what I needed to do and when. You and my wife even notice changes at home, where my ability to multitask was was significantly declined. So I shared that with my primary care doctor, he did some basic in office tests and said Joe, don't worry about you're just getting old. And I actually repeated that conversation within three years, before he finally with a little persistence from my wife that okay, I think you should go to the neurologist just to make sure. You know, in the neurologist did some tests, a variety of tests, actually, she came back and said, You know what, Joe? It looks like you have younger onset Alzheimer's disease. And so the one thing I would, to me take away from that for your listeners is if any of them have memory concerns, you know, go get it checked out. If you're not comfortable with what you're hearing, you know, advocate for yourself.

Kristen Cusato:

It's interesting to think about the fact that Alzheimer's is not normal aging. And I think a lot of people think it's just the way it is. So grandma's 85, put her in the back room, feed her a couple times, turn the TV on, you know, that's not this. This is not there's no such thing as senility, right, hardening of the arteries, you know, this is a real disease, that's, that's getting more and more folks. In fact, we've got about 300,000 people in the country living with and those are only the ones we know, and it used to be about 200 to 250,000. So at least more folks are coming through but I think to Joe's point, there are signs and we have classes at the Alzheimer's Association know the 10 Signs You can also access it on our on our website. It's real changes in behavior, memory loss that disrupts your daily life right? Challenge is in problem solving or planning. For example, my mom who had the disease was diagnosed at 61 was unable to balance a checkbook after being a to the penny checkbook person. So making errors and cross outs and mistakes. So changes in behavior. You know, if they repeat the same story four times in an hour, they're probably not going to know that they're doing that. But you will recognize not being able to come home from a grocery store, they've been going to for 10 years. So not being able to follow a recipe that they've been following and making for years, a lot of things that are changes in behavior, and there's a lot more but looking at these kinds of things, and then and then well, you know, maybe we should take this to a doctor.

Nancy Barrow:

How important is it when there are signs there to go and get treated? Can it really help with staving off the progression?

Joe Montminy:

People are starting to understand the importance of that. It's actually very significant because there's new research shows that the earlier you can catch the disease, the more you might be able to make a difference in how you manage it. Because there are new treatments coming up that are coming onto the market, there's actually two currently on the market and another one that's currently being analyzed by the FDA that's expected to be approved in the next probably sometime this quarter, that can actually slow down the progression of the disease, but only for people in the earlier stages. So the sooner you can access this, the better. But if you detect it earlier, you're able to start making lifestyle changes. Because there are studies that show there are things that we can do with that can actually reduce how the disease impacts us. You can't slow it down. But you might be able to at least help improve your quality of life.

Nancy Barrow:

And what are those things I don't know if you know these Joe or Kristen or whoever wants to jump in, you're both experts in the field so.

Kristen Cusato:

We're really talking about healthy habits. And we have something called 10 healthy habits, we like the number 10, I guess. But, you know, their weight, literally ways to love your brain. And a lot of them seem kind of simple, common sensical, right, but getting that exercise every day, you know, getting a certain amount of exercise, getting that blood flowing, we say that what's good for the heart is good for the brain, we're kind of looking at the themes surrounding the Mediterranean diet, right, so that those green leafy vegetables, the omega threes, the antioxidants, that kind of thing, also, continuing your learning, you know, you really need to continue to stimulate your brain and not just playing the same game over and over again, maybe games of strategy that actually cause you to kind of think outside the box and stretch your brain a little bit. And that's not only for folks who have no symptoms. This is also for folks who are get diagnosed, you know, to continue to really try to stimulate the brain. Not smoking, moderate drinking sleep, there are so many studies that talk about the importance and critical illness of sleep and a good amount of sleep. Uninterrupted folks who have sleep apnea, people who wake up a number of times during the night, it shows that research shows have a greater risk of dementia. So things like that to really, really protecting your head, which not only means when you're bicycling, but also, you know, even as a young person, making sure you wear your seatbelt in the car and making sure that the little ones are in the proper car seats in case something happens. So there's a lot of things like that, Joe, I know that you have more things that you you also incorporate in your life.

Joe Montminy:

Yeah, there's a couple of things. One, I want to kind of circle back when you talked about your diet and stuff like that, because there is emerging research that is showing that your diet and the inflammation that you have both not only in your gut, but the inflammation that may go to your brain are interconnected, and are a factor in the development of diseases like Alzheimer's disease. So that's where a diet is important. Because I was part of a federal government council down in Washington, DC last couple of years, they've put together a list of 60 risk factors that can actually help slow down the progression of cognitive decline and dementia. And this is important because there was a research study that came out back in 2020, Nancy, that actually showed that 40% of dementia globally, can be attributable to modifiable risk factor factors that we can actually control. I was surprised to hear that and I know the Alzheimer's Association, and had a huge push on that. So let me talk about the six risk factors that that Federal Council identified that showed the greatest potential to reduce your chances of cognitive decline. And Kristen hit alot of them and they include midlife, high blood pressure, midlife, obesity, physical activity, smoking, depression, and hearing loss. All of those are the ones that have the greatest potential to reduce your chances of cognitive decline, and they're all things that we can manage in our daily lives.

Nancy Barrow:

Hearing loss just has blew me away because I had no idea that hearing loss can be attributed to getting a dementia

Joe Montminy:

I'll get into a lot of details but I was at a of some type. conference in Amsterdam just last summer, where there was a extensive studies showing a direct correlation to hearing loss and increased potential for dementia. And I think part of it relates to the fact that how people were engaged with the people around them with their society and stuff like that. And if you're not hearing, if you're not, you know, if you're not able to be engaged in what's going on around you, you should disengage in your brain, you know. So, again, it's not a matter of keeping your brain stimulated. And if they can't stay engaged, it's not stimulating for people living with the disease to stay active. One of the best things I found is to look at a couple things. One, the Alzheimer's Association has done a very nice job of providing these weekly activities, things that are going on things to engage people in social activities, as well as support groups, you know, so that are things that you can stay engaged while having to get out of your house that really are quite valuable. I've also found that the more I can find something that gives me purpose, which for me, it's been being a voice and advocate for those living with the disease. But if you like to plant, you know, plant, or if you like to, you know, walk or you know, just find something that you enjoy doing, that gives you a purpose, and do it because that that to me from others that I've seen them in the disease, once they found something that they enjoy, it makes a world of difference of them getting up and doing it.

Nancy Barrow:

And what about, you know, you mentioned mental health. So let's talk about mental health. Because when you get a diagnosis like this, it's very difficult for you and the whole family, because you know, the dynamic is going to change eventually. How important is it for people to get mental health and behavioral health services, I mean, Connecticut Paid Leave does that they give you the income replacement. So you can go and do that if you needed to.

Joe Montminy:

I think mental health is a of getting mental health or some type of support is a critical part of the process. Because you have to remember, when you get this diagnosis, it's it's incredibly traumatic. You know, I know, for me, my life was spinning, I didn't know what to do. And I quite struggled with that. And so, well acting not only troubled, I would actually say I went through a number of different stages of grief, you know, because you've got the shock, when you get the diagnosis, you kind of are in denial of oh my god, I can't believe I have this, and the frustration of thinking about how it's going to impact your life. And all of your, you know, your family, your future, you know, so talking to a therapist for me, helped me for a couple of different reasons, one, helped me get grounded, because my life was just spinning. And it helped me just kind of figure out how do I start taking control of just individual pieces, and getting putting one foot in front of the other that's hard to do alone, because so many things are racing through your mind. And it's not just therapy counseling with a therapist, but also a support group, because I eventually got connected to a a younger onset Alzheimer's support group through my local chapter of the Alzheimer's Association. And meeting with that group, it was just specifically designed for people with younger onset was invaluable to me because it gave me a chance to sit down and talk with people who are dealing with the same issues, you know, you've got children, you've got a future that now has been totally changed your your retirement that you have planned, it's just thrown into chaos. So you can talk with people dealing with the same challenges that frustrations, hear how they're dealing with it, but also just just being able to talk to them, because the one thing I found is talking to your family when they're already very concerned about your future, and they're they've got their own set of stressors and nerves and, and concerns. You know, the last thing they want to I shouldn't say the last thing because they're willing to help, but it's hard for them to hear about the other issues you have and how you're worried about them and your work, you know, because it just adds more stress to them. Whereas talking to this, this unbiased group of people who could just offer unsolicited, it's unbelievable how therapeutic that is.

Kristen Cusato:

Yeah, I just want to add also in Connecticut, Joe, I think that's so important. And we have several groups in Connecticut and some of them are GAP groups, which is G-A-P- Giving Alzheimer's Purpose. And not only are they groups that kind of they separate sometimes they'll gather and then the folks with the disease will be with one person and then the caregivers will be with another but we also have these really great social engagement groups like Joe was mentioning And we have things that we do like, we will go to Mystic Aquarium. And we'll go to the Mattatuck museum. So we'll go to different places across, Bread For Life and do craft activities. And what's really important in groups like that, I think is the fact that it's a no judgment zone. So you walk in one person has the disease, then the caregiver or care partners with them and doesn't, and no one has to explain anything, you can just be you. And yes, talk and share the things that are really important. So I think, realizing that the association has all these different types of support groups, and you could just call our 800 number, which I'm going to throw out there 800 272 3900. That's the national 24/7 helpline for the Alzheimer's Association. And they just ask, I'd like to talk about some groups that are happening in my state, and we can connect you and you find what's right for you.

Nancy Barrow:

Yeah you've been a wealth of information for my friend who has also had early onset. I've worked with you guys closely. And I know that you're such supporters of Connecticut Paid Leave, you really helped get this passed, you know, you were seeing the value in it for caregivers too they get up to 12 weeks of income replacement. And as as long as they're taking FMLA along with it, they get their job back. But they can also take three months off when you first get diagnosed. And if it's like you said, Joe, it's such a trauma, right? Like you went through trauma, like the whole family must have gone through such trauma. But it's so wonderful to see you how many years later, being such an advocate and doing so well.

Joe Montminy:

Thank you. Thank you, Nancy. But it is but gettin back to your point, this disease does impact the whole family. And that's where getting my point about talking to other, it doesn't seem to be a support group, a therapist, one of the things many of your listeners need to realize is talk to a close friend, talk to family members, you know, find somebody that you can at least a talk discuss this with, it doesn't matter who it is. So many people don't want to talk about dementia and Alzheimer's, that they just kind of want to push it aside in helping them. yeah, it is scary.

Nancy Barrow:

Scary, right?

Joe Montminy:

But there are things, tools, resources out there that can help them manage through this. If they're just willing to have the conversation with that family or friend or friends to get the wheel started.

Nancy Barrow:

Has anybody treated you differently? Joe, after they found out about your diagnosis?

Joe Montminy:

Not really, almost all my friends have treated me basically not treating me any differently than like, okay, Joe, you are who you are, you know, the only person that has been has been a lot more cautious than my wife. And that understandably, because she just very cautious with how the disease is impacting me sees the things that I'm doing that I are forgetting that I never used to. And it's worrisome for her. And I understand that. So she's more cautious. She's actually, after a number of years starting to become more comfortable. But initially, it was very difficult.

Nancy Barrow:

I would imagine that it's really hard on a marriage is that something that you find?

Kristen Cusato:

But I think it's really, really interesting in this in this case is that so many people in the early stages, especially folks who are younger, right younger than 60, younger than 50, they'll go to a doctor and sometimes the doctor will say two you need marriage therapy, what, like not even acknowledging that this could be something because the fact that it's not usual, and it's not typical, so they don't see it a lot. That's why not only do we need to let everyone know about 10 signs, the 10 signs and what to look for Doctor education as well, you know, and we've pushed for that. And education for you know, home health care aides in Connecticut, right. So everyone really, this is such a critical time and Joe will agree with me, not only for awareness, but the fact that we have treatments finally treatments that changed the course of the disease that give families a little more time.

Nancy Barrow:

So what are the some of these treatments?

Kristen Cusato:

So what we have been having for that last, say 20 years are really just medications that treat symptoms, but that all changed and in 2021, the first monoclonal antibody, which is really heavy name for it's a drug that kind of goes up and remove some of those amyloid plaques, which is a hallmark of this disease that was approved, it's called Agithelm. There was some controversy about that drug. Then Laqembi another drug was approved last July July of 2023. And then by the end of this spring, there should be a third which is called Donanemab and the name will change because it will be FDA approved. And this is for folks in the early stages of the disease. There are only a few doctors in Connecticut right now that are prescribing this is medication so ask your doctor ask your neurologists to put you in that direction. There's also a battery of tests you have to go through to see if you even qualify for these medications. And also, they are infusion medication. So it's not like a pill that you can pop at home, you have to go to an infusion center and sit and have this infusion drug. So there are a lot of things that have to happen beforehand. And you have to, like I said, qualify.

Nancy Barrow:

What changes have you noticed in yourself, Joe since your diagnosis?

Joe Montminy:

Yeah, actually, honestly, I have. And that's probably one of the most frustrating parts about this disease. Actually this is one of the first things my neurologist told me when I was first diagnosed. So one of the biggest challenges you're going to have is you're going to notice the changes that happened to you before anybody else does. And that's difficult. But things that I've noticed, things like cognitive processing, everyday projects around the house, even like doing emails, texting are taking me two to three times longer than they did just a year ago, my wife and my mother and my mother lives in Plymouth, I've noticed changes in my personality, you know, increased mood swings, my ability to reason declining, reduced impulse control, you know, and these are all things that are totally out of character for me. So, you know, that's, that's probably is really challenging, really challenging.

Nancy Barrow:

Do you stay in touch with your doctors pretty regularly, so you guys can figure out what to do at this juncture?

Joe Montminy:

Part of the challenge with this disease, is that because besides the treatment, to remove the plaque, there's nothing there, there's no cure, there's nothing else that they can do. The only other drugs they have are to deal with symptoms. So there is nothing else she can do. So I am in contact with her. And I was in constant frequent contact early. But I realized that no matter how much how many challenges I have, there's not a lot that a nuerologists could do. And that was part of the mental challenge I had of just my mind was racing up, how do I deal with this? And it wasn't until I realized, me needing to find the resources and information on how to I compensate, how do I cope with some of these issues, that I realized that I can get a better do a better job of not only accepting the disease, but over time learning to start to live with the disease. And that's where, you know, I found resources, through the Alzheimer's Association actually, on how to help people who are just diagnosed. And they have a very specific one for people who are younger onset Alzheimer's, how to take control of it, additional wealth, and I'm just gonna mention a couple of things that really helped me information on coping skills to help us maintain our quality of life, through different aspects and a number of different things or a home safety checklist to help us be able to adapt our houses as our disease progresses, they'll all things that you start learning to cope, you find that you're better able to enjoy your life, given whatever you can do, you can enjoy it better. And that made a huge difference in the accepting the disease. And it was more me adapting to what I can do than anything else that really helped me adjust. Because there are no drugs that are going to do it, you know, it's us getting the help and resources and assistance that really can help us at least manage as best we can. And it can make a difference.

Nancy Barrow:

I really wish the Connecticut Paid Leave was here, when you were here, Joe, because it really would have helped you.

Joe Montminy:

I actually totally agree. Because I really could have used because at the time I was diagnosed, my neurologist did say, Joe, you really should stop working because, you know, people diagnosed with younger onset Alzheimer's disease have a very, very shortened life expectancy. And that was traumatic. And so she said, You really should probably retire as soon as you can. And so I retired within about a month just to help me kind of just assess how that was going to impact me. And, you know, I think from there, I just needed to kind of figure out what was going to happen with my wife and I was doing that on my own. If I had had the Connecticut Paid Leave available to me, it would have given me the ability to take paid time off. While I went out and met with those therapists that I talked about to help me get grounded. What is this going to mean in my life? You know, maybe it would have given me the confidence to work with my company to figure out can we make changes to so that I could adjust some of my workload so that I can keep working while I'm doing that? And then things like some of my support group meetings and doctor's appointments, you know, it would give it would have given me need the ability to do those different things I had I had I had the time to step back regroup, put my life together, and even for my wife who had that had to go with some my appointments, you know, because Connecticut Paid Leave, you've talked about it could have caregivers, you also take time off to help us. Yeah, all those things would have hugely benefited my family.

Nancy Barrow:

Yeah, and I'm sad, I'm sad that we weren't around, you know, it took it took a while. But, you know, I'm hoping that this podcast and, and everything that you're doing will help someone else in Connecticut who may get an early onset diagnosis and, and maybe they can use Connecticut Paid Leave, and they can do a reduced schedule from work, maybe they can only work, you know, in the mornings, and they take the afternoons to do all those things, go to the support groups, you know, meet with your doctors, it does give you flexibility, and I'm hopeful that someone listening it will resonate, and they will be able to use it.

Joe Montminy:

Well Nancy I've learned that I'm not sad. I mean, I don't I don't look at as being sad for me, I'm actually glad for your listeners, that they have this available because that's that's really what we should be focusing on. How fortunate they are, how fortunate their family is that that it is now available. And that's the great thing that they should take away from this.

Nancy Barrow:

And what do you think, Kristen? Like? How do you feel that this can benefit families?

Kristen Cusato:

Joe is obviously speaking from being in the midst of it. And inside from the inside, right? This is the voice of living with this disease, but also thinking about caregivers, right? It's completely changing our caregivers life, it involves, as you said, the whole family. It's emotionally, financially, physically taxing for both. And sometimes the caregiver, the education, we always say education is so key for caregivers, because sometimes I think that a caregiver has a light bulb moment where they realize they need to switch the way they're thinking and communicating with their person with this disease to make it easier for everyone. IE, you're not supposed to argue with people who have dementia, right? Let's go around and be able to talk and have a conversation going into their reality when later on in the disease, they may go back to a different time and place in their past. So join them there, right. But this is really hard because you want your person to be okay. And you want your person to be the same. So it's really hard to change. So having a caregiver be able to take time to go to these classes, and learn or just take time to be able to breathe and set things up for what makes sense for them and make sense for the family. I think that would be really, really critical.

Nancy Barrow:

What advice Joe, would you give someone with an early onset diagnosis today.

Joe Montminy:

A few things, and I'm just gonna talk about what's worked well for me, I've learned slowing down, you know, taking one day at a time doing once one thing at a time has been has helped me tremendously because, you know, getting this diagnosis, it really is life altering, we've talked about that. But it's also given me a new lens through which to see my life and focus on what's important. And actually, that to me is probably one of the things I look at as a positive from this because I am much more aware of how precious time is and how I want to spend it. So I focus spending quality time with my family, my friends, I look for ways to adjust or adapt to what I do. We talked about that earlier, but things like routines. So I know what to expect. They're staying organized. So I know where to find things. Because you can remember, you know, as my brains slows down, the more I can do to compensate, organize, being organized, having a routine, the more I can enjoy my best life, you know, eating well, we've talked about the benefits of eating and, and inflammation and also staying active, you know, finding purpose in life. And for me, you know, that's been my advocacy work, but finding something to stay active, helps, helps drive keep me up and keep me driving or motivated I could say. So that's what I would suggest if you can do some of those things, in a really make your day more productive. And getting back to the fact that earlier utilize Connecticut Paid Leave, take the time off to help you deal with this disease, because that would have been invaluable to me. I think that is probably the most some one of the more important things that they can take away.

Nancy Barrow:

What are your hopes for this next year for

Joe Montminy:

Nancy not so much for me in terms of hopes, but I you? think I'd like to talk about how this is really probably the most exciting time ever in Alzheimer's research care. It's alzheimers research, treatment, care and support. And to me that will give last July at that conference in Amsterdam. There were some new update guidelines proposed that are going to help doctors make a more accurate Alzheimer's diagnosis earlier using blood tests.

Nancy Barrow:

Oh wow.

Joe Montminy:

It's going to help them diagnose and treat the disease even before the onset of symptoms. And this is in addition to currently they have PET scans and spinal taps but they can be expensive. been a little more invasive. But the blood test, coupled with these guidelines to help the clinician, I think are going to totally transform the clinical diagnostic process because the blood tests can be faster, in addition to being accurate, very straightforward, inexpensive, and can be broadly used to a wider group of people, which is unbelievable.

Kristen Cusato:

But I think that more this bloodwork will be, you know, earlier diagnosis, you know, be able to identify these amyloid plaques in your bloodstream and in your brain. Right. So that plus cognitive testing gets that earlier diagnosis, which means there's more options for treatments and clinical trials. So I think that is where it's really going to be a game changer as well as like Joe is saying, less invasive than a spinal tap and a PET scan.

Nancy Barrow:

Kristen Cusato, thank you so much for your all your wonderful information. How can people get in touch with the Alzheimer's Association, the Connecticut chapter?

Kristen Cusato:

Absolutely, well the first thing you can do is call our 800 number and then ask to be connected with us. And that's 800 272 3900. And that is a 24/7. Alzheimer's Association helpline, our website is alz.org/ct. And you can head there and find out all sorts of exciting things that are going on with our chapter.

Nancy Barrow:

Any last thoughts for you, Kristen, or for you, Joe, before we end the podcast?

Kristen Cusato:

I'll let Joe go. This is This is so nice to hear, and be on a podcast with him. He's so positive. And I just love the fact that you're sharing your story and helping so many other folks who are getting this scary diagnosis

Joe Montminy:

I think I would talk about something that my every day. neurologist really never talked about. And that is once you get the diagnosis, it doesn't mean it's an end to a meaningful life. You know, yeah, we do need to make adjustments over time as our disease progresses, we can still lead a fulfilling life. And they might, you know, she's been so focused on treating the disease. She never talked about the future, except in the terms of getting my life in order, making sure everything was taken care of. This is how the disease is going to progress. She never talked about yeah, but you know what, you can still enjoy your life as it is today. You can still enjoy your life over the next few years. And yeah, you may need to make some changes. It's not the end, it just means you're gonna have to make changes. And I think that was important once I realized that that made a big difference. And instead of me focusing on how things are going to get worse, I was able to focus on adjusting for that. But living my life also in that makes a huge difference.

Nancy Barrow:

Kristen Cusato, Joe Montminy continued good health to you. And thank you for all you're doing to educate people about early onset Alzheimer's, both of you but Joe, I really hope we can get you on another podcast. And there's been such great progress with you. I'm I'm really so impressed with who you are and, and how you express yourself. And it's been a really big honor to have you on this podcast. So thank you, Joe, so much.

Joe Montminy:

I really enjoyed being on the podcast today.

Nancy Barrow:

And same with you, Kristin, thank you so much for all your great information. You both were such great guests. Thank you.

Kristen Cusato:

Thank you so much for having us. It's really important for us to get the word out so we appreciate this opportunity.

Nancy Barrow:

For more information or to apply for benefits go to ctpaidleave.org. This has been another edition of The Paid Leave Podcast. Please like and subscribe so you'll be notified about new podcasts that become available. Connecticut Paid Leave is a public act with a personal purpose. I'm Nancy Barrow and thanks for listening!

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Nancy Barrow

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