Life-Changing Infusion | Alzheimer’s Treatment Close to Home

Life-Changing Infusion | Alzheimer’s Treatment Close to Home

On this episode of Moments That Matter, host Melise Oakley travels to meet Brenda Hale, who courageously shares her personal journey following an Alzheimer’s disease diagnosis.

After receiving her diagnosis, Brenda abegan exploring treatment options. With an order from her neurologist, she discovered that advanced Alzheimer’s infusion therapy was available close to home through Deaconess Illinois Union County Hospital.

Brenda shares how the treatment has made a life-changing difference for her, restored hope, and allowed her to continue enjoying meaningful moments with her family. She also speaks honestly about the challenges of Alzheimer’s, the importance of early testing, and the value of having access to advanced care in Southern Illinois.

Her story is an encouraging reminder to live each day to the fullest—and that no individual or family has to walk this journey alone.

Early diagnosis matters, and so does access to quality care close to home.

Special thanks to:

Deaconess Illinois Union County Hospital
517 N. Main Street
Anna, Illinois 62906
618-833-4511

Moments That Matter is a podcast from Voyage Senior Living, created to provide helpful information, meaningful conversations, and encouragement for seniors, caregivers, and families navigating life’s important transitions.

Learn more about Voyage Senior Living:
https://voyageseniorliving.com

This episode presents one patient’s personal experience and is not intended as medical advice. Individuals and families should consult qualified healthcare professionals to determine which testing or treatment options may be appropriate for them.

Transcript

SPEAKER_02 0:00

Moments That Matter is brought to you by Binkley Ross Family of Funeral Homes, First Southern Bank, and by Melissa's.

SPEAKER_00 0:19

Hello, welcome to Moments That Matter, a podcast from the Voyage Senior Living. I'm Melise Oakley. Today we're joined by Brenda, who shares her personal journey after being diagnosed with Alzheimer's disease. Her story is one of honesty and hope and the importance of living each day to the fullest. We hope her experience encouraged families facing a similar journey and remind us all that no one walks this path alone. Let's get started. We join Brenda on location at Deaconess, Illinois, Union County, just after she finished her procedure. Well, welcome, Brenda. Thank you so much for being here. Um so tell me a little bit about yourself.

SPEAKER_01 1:08

I'm married. Uh I have a boy and a girl. I have four grandsons. Um my husband and I have been married for 58 years. He was my high school sweetheart. Uh, we've lived in the same location for all of our married life, um, within 30 miles of each other. Um I'm very outgoing. I love sports. What's your favorite sport? My favorite sport is NASCAR slash basketball. Oh, because I had a my son-in-law is a basketball coach, and two of my grandsons played for him, and now my one of my grandsons is head coach in a little town.

SPEAKER_00 1:58

Well, I appreciate you coming on. Um, this is very near and dear to my heart. Let's kind of just tell us a little bit about your journey of why you're here at the Union County Hospital today. What has brought you to the Union County Hospital today?

SPEAKER_01 2:16

I was diagnosed with mild cognitive imperative due to Alzheimer's disease. And when was that? That was back in March of 25. You had shared with me. Share a little bit about your journey. In 2022, when we were going through COVID, I took the COVID shot because of my dad, because he was elderly. Um back then he was in his 90s, and I developed COVID. And you said several times, right? Three times. Okay. I had a really bad case the first time, and I was the type of person that I was never sick. I mean, I I really I had I had a cold once in a while. I mean, I was just not a sickly person. Very healthy. And I stayed active and I I tried to stay as healthy as I could. After I had COVID, things started happening. I developed vertigo.

SPEAKER_00 3:30

Okay.

SPEAKER_01 3:31

I had brain fog. I couldn't complete sentences. I became depressed. About how long this was this period? This period lasted for about two years. Okay. I lost 60% of my hearing, and the first thing they thought that I had was menhes. So I was sent to a menir's doctor, but we had to wait a year because he wasn't taking new patients.

SPEAKER_00 4:10

Okay.

SPEAKER_01 4:10

And we didn't want to go to St. Louis. We waited a year and things didn't get any better. Um and you continue to see were you getting worse? Were you staying the same? I was getting more depressed. Okay. So your mood was yeah. I I didn't want to go out. I didn't want to talk to people because I couldn't remember words when I would talk. Uh conversation was uh terrible. In a group, uh, we would go out to eat. I couldn't hear. So I just had my dinner and really didn't get involved in any conversation of any kind because I couldn't hear what was going on anyway, and I I got so tired of saying, I can't hear you, could you please speak up? That caused a lot of depression because I was so outgoing. I I mean, I love people. I love to see people, I love to find out things about people. When did you were led to seek medical advice? After I went to the Meneers doctor, they ran a battery of tests to find out if it was meners. That lasted for probably six months to a year. They were very uh in-depth procedures that you had to go through. And they were still dealing with the COVID, so you couldn't get right in to different places. It took a while.

SPEAKER_00 5:46

You had many barriers to go through. Yes, right? So now this is like two years now, you're still working on this.

SPEAKER_01 5:53

Yes. They they found out it was not menears that caused the hearing loss. So I went to a um audiologist and I got hearing aids. They did correct what was going on with the hearing, which made a big difference in my outlook, but I still didn't know what was wrong. Were you still having difficulties with words? I was still having the difficulty with the words. The brain fog was still there. I could not um imagine going anywhere, mainly by myself. Right. And I had always done that before. You were very you're very independent. Yes, I was a very independent person, and I was having balance problems too. I failed to mention that. They sent me to a balance and dizziness clinic because I was still having the vertigo, not as often as I did before, but it was still causing problems. So I went to this clinic and it was uh they they run me through the testing to find out if if I qualified. Right. And I did. Okay. So I went there for three months, and mainly everything was black and white, audio inside of a tube where they you were watching it at the same time, and you were trying to balance yourself at the same time. Okay. I did very well. I come out of the my sentences would go together. I I I learned to speak better, I could hold a conversation. So the therapy was helping. The therapy helped me a lot, but I still didn't know what was going on. So when did you get diagnosed with what you had? Alzheimer's. My husband kept telling me you need to go to a neurologist because the hearing loss there are, and I don't know the the technicalities, yeah, the medical names. You have two, you have two on each side of your hearing, two things on each side of your hearing, plus the crystals on the inside. And when they did the hearing test, I have one over here. So I had to learn to teach my brain to my mouth, I mean, from my ears to my mouth, to my brain, for everything that I spoke or whatever I whatever I did, because background noise was the biggest thing that I it just threw everything out of whack. Right. After I went to the neurologist, she did blood testing. Um she had all the records of everything that I had done so far. She did some of her own testing. Um, the first appointment I had, I took a dementia test and I scored a 24 out of 30. I didn't like that at all. You were usually an A student? Yes, I didn't I didn't like that at all because I couldn't remember the words. The the the words that they gave you to remember after they did before, and then they give you all these math problems. Then they come back and ask you for these words, and I couldn't remember them. I couldn't tell her one of them. Yes, very frustrating. I will tell you that she sent me back to St. Louis. Your neurologist. My neurologist, just to be sure that there was nothing else that they could do. And she had already run all of her tests, she had run background background, uh, the blood tests that they ran would tell you about your ancestors. And somehow there was, I don't know how they did that, but somehow they could do that. And she already suspected. My husband suspected. I didn't have a clue. I had no idea. I'm still thinking it has something to do with when I had COVID, all this started. I did I I never dreamed. You weren't expecting this diagnosis.

SPEAKER_00 10:40

So when she said it to you, I cried. Right? I cried a lot. So how did you first learn about the Alzheimer's infusion therapy that you have received? Through my your neurologist? Okay. And what made you decide to pursue to pursue this treatment?

SPEAKER_01 10:59

Because I had gone through the Alzheimer's watching my mom. Uh, we kept her home for four years, and then she went into the memory unit in Wabash, and I saw her decline. Scary. Yeah. She completely shut down. She knew my she still knew me and my dad because we were with her 24-7 all day long until she went to bed. So you had no doubt in your mind that you were going to do this. Like I had no doubt because I do did not want to be a burden to my kids. If you were to if I was to contract it and have to go into memory unit.

SPEAKER_00 11:46

I didn't, I did not want to put them through that. But you were a pioneer because you've now had how many treatments? 23.

SPEAKER_01 11:54

And what did you score on your test? Two weeks ago, I had a dementia test and I scored a perfect 30. I remembered every word. I had no problem with any of it. And I was so happy, I jumped up and screamed because I was so proud of what I had come from.

SPEAKER_00 12:21

So can you kind of explain the uh because it's kind of scary to think about infusions. You know, you you're sitting here with an IV. Can you kind of describe how your appointment goes? I come in to Union County Hospital.

SPEAKER_01 12:38

Union County Hospital. Uh, it takes them about 30 minutes to get me hooked up to the machine, and they use a solution, and I have to wait 30 minutes before they start the infusion, and then we do the infusion, and that takes around an hour, sometimes hour 15 maybe, and then I have a 30-minute waiting period afterwards. It's a piece of cake. I mean, that's all I can say. I mean, it's a piece.

SPEAKER_00 13:10

But it's all inclusive here. So you have you have all your all your staff here. Everything is you're able, and you had shared with me, like during your appointments, uh, you've really enjoyed the staff.

SPEAKER_01 13:24

The staff here, they are wonderful, they are very compassionate with everything you're going through, plus anything you're going through in your life other than this, because this is enough. Right. This is enough.

SPEAKER_00 13:40

But when you have a lot of other stressful things and it it's it's because now you have an option that you can do it at home, right? Yes. But you have opt out. And how far away is your home? Two hours. One way. One way. So you it's a four-hour trip.

SPEAKER_01 14:00

Yes, but you want to come. I want to come here. And I don't want a pill, I don't want a shot, I want to come here where I know I'm taken care of, the best that I can be taken care of with the best people there is. What was your biggest concern when you were gonna first start this treatment? How do I keep it from my dad? Because I knew that there was gonna be, I was gonna have to tell him an excuse why I wasn't at his house on that day because I visited him every day. Right.

SPEAKER_00 14:38

So that was your biggest is how the community to tell individuals. Right. You said you kind of kept it to yourself for a while. I couldn't tell anyone.

SPEAKER_01 14:48

Only a small group of people that were my best friends knew. Why did you feel like you needed to keep that to yourself? You were to protect to protect my dad because I knew how he was and how much he had aged through the four or five years with your mother, with my mom.

SPEAKER_00 15:12

So this has been a family kind of diagnosis, uh, a little different than what uh you have been diagnosed. But how does this um treatment process affect your daily life? Is there anything that you could say, like this is a this is a lot, yeah, and having this diagnosis is a lot and heavy. So, how do you feel with the treatment? How can you ease somebody that maybe has that diagnosis? And how did you get through it so far?

SPEAKER_01 15:43

I just continue to do everything that I did before. I didn't change a thing. Okay. I volunteer at a compassion center. Okay. So you keep active. I stay very active. I still go to NASCAR races and I go by myself. Um, my husband can't travel. He plans my trips. Uh, I'm getting ready to go on a two more NASCAR races this year. Um it's amazing. I go to ball games. I like I said, I volunteer and it's a lot of work volunteering at a compassion center. It's a lot of work, but I love the people I work with. They were my family that I told everything to.

SPEAKER_00 16:28

Have you experienced any challenges or side effects along the way?

SPEAKER_01 16:34

No.

unknown 16:35

No.

SPEAKER_00 16:35

So no side effects. You come in. I know they were asking you questions.

SPEAKER_01 16:40

None. I've had no side effects. You don't have any kind of nothing. I don't have any headaches. I don't have anything. I feel as normal when I'm not having the infusions as I do when I'm having the infusions.

SPEAKER_00 16:58

What changes have you noticed since starting the infusions? Like, can you find your word? I mean, you're having conversation.

SPEAKER_01 17:06

I'm having, yeah, I can have conversations with people. I don't struggle for words anymore like I did before. And maybe I shouldn't say this. I know that this is not going to stop the procedure of the Alzheimer's, but I do know that it's going to slow it down. And it's improved it. Yes. Where you're at. And my neurologist told me you it may be 20 years. Wow. And you may never have Alzheimer's. And that's a miracle. I mean, from all the people that's had it. I mean, it's a miracle.

SPEAKER_00 17:46

How has your journey impacted your family and loved ones? You know, you spoke. What about your kids and when that you got the diagnosis? How has that impact?

SPEAKER_01 17:55

It took us probably two months before we even told our kids. Okay. And the grandkids didn't know at all. I had four grandsons, and they're all in their, I mean, they're in their teens then. Um, we didn't want to put a burden like that onto them. We were already going through a lot of things with my daughter-in-law because she had cancer.

SPEAKER_00 18:17

Oh.

SPEAKER_01 18:18

And uh we just really didn't want to burden them, but they needed to know what was going on because it is hereditary, and you have to at least give them the chance to make their own decisions if something like this comes up. But they've been very supportive. Wonderful. So, what has been the most encouraging part of this experience? Got me closer to God. That's one thing. Uh-huh. I've met a lot of people that are going through things that they don't understand, especially when they forget a lot of things. And now I can tell them that there is an alternative. They they need to go to the doctor. Yes. They need to have a dementia test. Yes. They need to get have a dementia test. Then they need to go to a neurologist and find out why. If it affects their life, they need to find out what's going on. So, what do you wish more people could understand about this disease? That dementia and Alzheimer's are not the same thing. Yes. Yep. They're not the same. I've never been able to remember names. I've been like that since I was in high school. I forget names very quick. Uh, one of the nurses that works here, her name is Sherry. I called her Rose for I don't know how long. And she looked like a rose to me.

SPEAKER_00 19:53

She is pretty like a rose, yes. She is. What advice would you give someone who recently has been diagnosed?

SPEAKER_01 20:01

You need to really think about what you would do if you actually came down with the disease and didn't try to get help because especially if you have children or grandchildren or a husband or a wife, you don't want to put them through what a lot of people have gone through. You don't want to watch a loved one go through all of that misery.

SPEAKER_00 20:46

What would you say to a family caregiver who is supporting a loved one with Alzheimer's? Be patient.

SPEAKER_01 20:53

Don't tell them everything because they don't understand. They don't understand dates, they don't understand time of day. My mother went to bed at three in the afternoon, and she couldn't understand why my dad didn't go with her in the same room because she was in the nursing home. Just love them. Be there for them when they when they fall apart because they do. And and just show them all the love you can as long as you have them.

SPEAKER_00 21:33

What would you like for people to know about the Alzheimer's and the infusion therapy? If someone has got diagnosed, what would you do for a vice for someone that was just like you?

SPEAKER_01 21:46

Do it. Right? Absolutely do it. No matter what. It's changed your life. It's changed, yes. It's changed my life. It's made me a lot more compassionate with other people. In any situation, my faith has gotten tremendous because that's the only thing that's kept me going.

SPEAKER_00 22:11

So, how do you think community can better support someone that has Alzheimer's or that's living with this disease?

SPEAKER_01 22:20

Be more aware. I mean, this right here is the biggest thing you can do. Is educate? Yes, because I have four people that I am keeping an eye on at home. And they came to me, they knew after my dad passed, um, I wasn't bashful about telling anybody. And I told them, I said, if you have a problem or you think you have a problem, then go check it out. Be an advocate for yourself. Because it's it's you that's gonna suffer, and you're gonna take your family right with you. And you need you need to know, even though you don't want to. I know there's a lot of people out there that don't want to know things like that, but it'll extend your life to the quality, the quality of your life, and go for it, right?

SPEAKER_00 23:21

Go for it. There's over seven million people that have Alzheimer's, and in 2050 it's going to triple. So this right here is such, I feel like a pivotal moment. I think I told you before, but I prayed for this for the simple fact to be able to have a cure or something that would help this. Why don't you also tell us about the the thing that you have that you've carry?

SPEAKER_01 23:51

This is something that my neurologist gave me. Okay. And it has a barcode on it. Okay. And I carry this with me everywhere I go, and it has the card that has her phone number on it. And if I would ever be anywhere, they were to flash this number, call my neurologist, and she would know exactly what to do. Okay. And this is just a safety precaution. I've never had any incidents anywhere.

SPEAKER_00 24:24

And how long have you been going through the treatment?

SPEAKER_01 24:27

Uh almost a year now. 30 treatments, right? I have 23. You don't have 23. Okay. Yeah. All I can say to anybody that thinks that there is anything wrong, even if you feel like you're, you know, even if somebody tells you, oh, you're, you know, that's just old age. No, it's not just old age. Being your advocate. When it affects your way of life, yes, that's when you need to take action. And you need to do it as soon as you can. I think you need to be the poster person for this.

SPEAKER_00 25:09

Because it's I know it took a lot for you to to talk about it because I'm sure it's very emotional. It is.

SPEAKER_01 25:15

I was one of the lucky ones, as far as I'm concerned. Um, God has led me through all of this. He took me from COVID to every place I went and showed me what could be done.

SPEAKER_00 25:35

I'm just so blessed to have met you and been able to hear your story. And I would love to have a follow-up of all the things and all the your uh your success. Your A plus now.

SPEAKER_01 25:52

I am as far as I I'm gonna live a full life from here on out. Quality. Yes.

SPEAKER_00 26:01

Well, thank you so much for joining us today. I really appreciate it. I know it wasn't easy for you to talk about this, but just to get the awareness out for this disease is just it's always been heavy on my heart because it's affected my family and a lot of um the people in my life. So I just sit here and just smile from ear to ear, seeing uh what a beautiful soul you are, and uh you're the pioneer of this treatment. So thank you. Thank you for joining us for this episode of Moments That Matter. A special thank you to Brenda for sharing her story with such courage and openness. We hope today's conversation has brought encouragement, understanding, and hope to anyone impacted by Alzheimer's disease. If you find this episode meaningful, please share it with someone who may benefit. Until next time, remember that even the smallest moments can make the biggest difference.

SPEAKER_02 27:07

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