Patient Advocates Jim and Geri Taylor: Living with Alzheimer’s Disease

Show Notes

Patient advocates Jim and Geri Taylor talk about their personal experience with Geri’s Alzheimer’s disease and what it’s been like during the pandemic; their work with the Alliance’s Talk NERDY To Me Training, and their latest campaign to change clinical trial recruitment in Alzheimer’s disease trials.

Episode Transcript

Sue Peschin:

Hello, everyone, and welcome to This is Growing Old, a podcast from the Alliance for Aging Research. I’m Sue Peschin, President and CEO of the Alliance for Aging Research, and today, I’m thrilled to be talking with patient advocates Jim and Geri Taylor. I’ll be talking with them about their personal experience with Geri’s Alzheimer’s disease and what it’s been like during the pandemic, their work with the Alliance’s Talk NERDY to Me training, and their latest campaign to change clinical trial recruitment in Alzheimer’s disease trials.

Sue Peschin:

Jim and Geri, thank you so much for joining us today.

Jim Taylor:

Thank you, Sue.

Geri Taylor:

Thank you.

Sue Peschin:

Now, COVID-19 has completely upended daily life the last few months. How have you both been doing?

Geri Taylor:

Well, we’re feeling, generally, very sorry about the situation of the world at this time and the people who are suffering personally. We’re hunkered down in Florida and we’re getting out as much as we can in terms of walking and being in the outdoors, but not very much with other people. Zoom has been a blessing.

Jim Taylor:

I’ve been walking and swimming and biking most days. I really enjoy swimming down here in Florida, beautiful pools and the sunshine is really delightful. Also, I think the high impact rate for seniors has spurred us to pull out our wills and get all our documents together in case we were impacted, so that our kids could just step right in and handle the legal things that were necessary to be done. And that took a little while and it always feels good to have that refreshed and tidy it up. Also, we watch Netflix more than usual. We’re reading a lot.

Jim Taylor:

But one thing, we had a lot of exciting events planned this spring related to our advocacy on Alzheimer’s, and of course those are all canceled. So there’s a thread of we kind of lost our sense of purpose temporarily, and that’s one downside that we’ve experienced.

Sue Peschin:

Yeah. I think that’s the case for a lot of people too, when you have to isolate and you’re at home, and that’s a big issue for a lot of people. So I appreciate you raising it, and I think that’s so much of what I appreciate about the two of you, is just your openness to talking about things that sometimes people are, I don’t know, embarrassed about or afraid to reveal. And I think that’s good for everybody to hear.

Sue Peschin:

So you both have traveled extensively, sharing your experience with Alzheimer’s disease and your efforts with patient advocacy, so I’m wondering if you would please share your story with our listeners.

Geri Taylor:

I thought something was going on and stopped working at about 65, but I thought I was getting a little not as sharp as before, but was sort of waiting to see if anything else would pop up, sort of a drop dead date, and it did. One morning, I went into the bathroom and looked in the mirror and didn’t recognize my face, and I just felt like it was wrong. So I told Jim that I think something was off and we needed to go to a neurologist, which we did. And that was the story, and that’s what we’ve been working on since.

Jim Taylor:

Geri had mentioned that she was having some cognitive issues, but I really didn’t worry about it and didn’t really think too seriously about it. So when we went to the neurologist and he told us and explained there was MCI, mild cognitive impairment, Geri was emotionally ready for that, with her family history, what she’d been experiencing, but I was totally stunned. And I think it’s important to let people know that that can happen to the care partner as well as the person with the disease. I was just really depressed for two weeks, at least, and I was non-communicative and withdrawn.

Jim Taylor:

And after that, I came back, we talked about it and really began to straighten out our lives and figure how we were going forward. And it has, for us, been a remarkable journey. We’ve been blessed with many wonderful people that we’ve gotten to know with rewarding activities.

Jim Taylor:

And one of the things that happened to us was The New York Times connected with us. The Alzheimer’s Association New York City connected us with a New York Times reporter who wanted to write a story about a family in the early stages of the disease. And we spent two years actually with the reporter working on this story, and it turned into a 12-page article that was a special section in The New York Times on a Sunday, which is wonderful because it helped us do what is very important to us, and that’s publicly address the stigma associated with Alzheimer’s and give people with the disease and care partners a message that they can live very wonderfully, especially in the early and mid years of the disease. And the partner is simply forgetful at first and can still have a wonderful life spurred on by finding a passion and by knowing that this can be a joyful time in their life.

Jim Taylor:

The other thing that then happened is Geri knew from her background as a CEO of a large care institution and research that she’s done personally, that she wanted to get in a clinical trial. And so, we were very, very fortunate to find a trial at Yale. And it’s the Biogen drug Aducanumab, which now may be the first breakthrough disease-modifying treatment.

Jim Taylor:

And through that work, we have become extremely aware of the crisis in getting people with Alzheimer’s into clinical trials. Less than 1% today of the people living with Alzheimer’s are participating in a clinical trial, which is really a shame. There’s a lot of barriers and we’re really working hard to overcome those barriers and to reach out to folks and encourage them to participate in trials.

Sue Peschin:

That’s great. So you’ve attended the Alliance’s Talk NERDY to Me training, first as participants, and then as expert speakers. Will you please tell our listeners a little bit about what you’ve learned from the training and how it’s helped you as patient advocates?

Geri Taylor:

My experience, my education actually had me set up when I went to the program. So I had done research and have a background in that. So I sort of coasted a little bit that day in the afternoon, however, what was so astounding and pleasing for me was that the other people on the panel, their work was a variety of work, and they didn’t have that background, but what they had was heart. And they had intention to make things better and to build programs for people with, I guess it was about four or five different diseases that people were representing, and trying to get more whatever they needed, medication, support, a whole variety of things.

Jim Taylor:

It was a great experience for me, Sue. I enjoyed it. I learned a great deal. Unlike Geri, this was all new to me. And because you brought together people with four different diseases, and you had an overview of each of the diseases with part of the course, I learned a great deal.

Jim Taylor:

So there was a great amount of support and learning back and forth between the individuals. I learned about the drug research, the phases of research, and it really prepared me to be a much stronger and better equipped advocate.

Jim Taylor:

But the single most exciting thing that happened is there was an individual lady there who did not have a medical background. She was in chronic pain and she had formed, a number of years earlier, an organization to support people, where none existed, for people like herself. And I realized at that point that I didn’t have a medical background, nor did she, but look what she’s done just because of her intention and her work and the knowledge she’s gained. And I realized there was no reason that Geri and I couldn’t do the same thing, that we had all that potential and all it needed was the decision to throw ourselves into this fight against Alzheimer’s. And really, it was a very significant decision and turning point for us in our advocacy.

Sue Peschin:

That’s awesome. And you’ve done incredibly meaningful work, so thank you. In your opinion then, why should other folks maybe consider participating in the training?

Jim Taylor:

The training really prepares you to be an advocate. You no longer have that, “Well, what should I say?” You have a knowledge base on which to build your advocacy work. And the other thing I think you did that was great, is you talk about how to be an advocate, how to do research, how to do trials, and you actually put us on the spot of coming up with something that’s concrete, and both Geri and I did that. And both of us followed through on that.

Jim Taylor:

So you really leave there with the tools that you have, that you need to be an advocate. What you need to do afterward is to make a decision. How are you going to use those tools? Are you going to be worthy of the investment that the Alliance for Aging Research has made to educate you and give you this strengthening? And if you decide, yes, I will do that, then you are on a very worthy road.

Sue Peschin:

That’s great. And for folks who are listening who want to learn more, go to our website at agingresearch.org and click on the choice to learn more about Talk NERDY To Me, up towards the top. We’re recruiting for this year. So if you or a loved one are age 65 or older and are going through age-related macular degeneration, heart valve disease, persistent pain, Alzheimer’s disease, or atrial fibrillation, and are interested, send us an email. We’d love to hear from you.

Sue Peschin:

So Geri, I’m going to go back to your personal story. As a person living with Alzheimer’s disease, what would you say to someone who’s just been diagnosed?

Geri Taylor:

I think it’s very important to understand what goes on with Alzheimer’s. There are so many stories of people’s experiences, jokes, and I think that grounding oneself with the path that will go on through the disease, I think it’s important to get a good diagnosis. There’s a lot of people who get a soft diagnosis. I have heard so many stories about people, “Oh, I thought they told me I had Alzheimer’s. No, turns out I have something else.” And very important to know the enemy. The only way you can handle that sort of thing is to know how to get around with it.

Geri Taylor:

There are organizations out there that can be very helpful sometimes with programs to give you a picture of how the diseases go along, and gives you, very often, support in the form of new friends. It’s always easier to handle things if you know somebody who’s sort of in the same bucket and you find ways you might not have had you not met new friends.

Geri Taylor:

And even though you have Alzheimer’s or something else, you need to get up for something to do every day. And I think that’s a good way to live generally, whether or not you have a problem, but finding a way to make yourself feel whole, make yourself feeling part of the game, be surprised to what you can do that you hadn’t tried before. And sometimes, you get a diagnosis you don’t want, but you may have an opportunity to open up part of yourself that you hadn’t taken the time for.

Geri Taylor:

With Alzheimer’s particularly, and with some other diseases, it’s very important to be very clear about how your day goes, because the big problem is remembering. And you can spend, if you want, the whole day going around the house trying to remember where A is, where B is, and that’ll just wear you down. So what we look to, what I especially look to, is strategies. My closets has never been so neat, my shoes are all lined up, because you can lose a day in that.

Sue Peschin:

So I have to ask you, when you become a lady that has Alzheimer’s disease, do you still have a ton of shoes, no matter what, or what?

Jim Taylor:

No, actually, it’s minimized the number of shoes.

Sue Peschin:

Oh okay.

Jim Taylor:

Fewer decisions.

Sue Peschin:

So with you being the family caregiver, what advice, insight would you give to others facing a similar situation?

Jim Taylor:

Thank you, Sue. I like this question because I’ve thought about it a lot. I get asked this by people who really want to know because it’s not an easy journey for either the person with the disease or for the care partner, and sometimes, the issues or the problems of a person with the disease are much more attended to than care for the care partner.

Jim Taylor:

So my suggestions are initially to take good care of yourself as a care partner; physically, emotionally, have time for yourself. Be gentle with yourself, especially as you adjust to the new role. I think secondly, it’s very important to work on ourselves to develop greater patience. As the disease progresses, Geri speaks more slowly, she accomplishes tasks more slowly, and we need to readjust our clock to better accommodate the change in patterns that the person with the disease is experiencing.

Jim Taylor:

Our attitudes are very important. I think living with Alzheimer’s can be challenging and pull down the emotions of the person with the disease. And I think we underestimate how important our own buoyance, our own positive attitude is. So I think we need to figure out how to make ourselves physically strong, but also emotionally strong and supportive, and help be there to help raise the spirits of our partner when it’s needed.

Jim Taylor:

Another thing is, I think we’ve seen this in so many of the people we’ve come in contact, is that many care partners tend to be helicopter partners, like helicopter parents. They too quickly rush in to help and to do things that the person with the disease can still do for themselves, infantilizing the person with the disease, helping them to stay on the couch, which is the opposite of what they should be doing. And Geri and I have an agreement that I won’t help her with anything until she asks or I see that she’s failing, because it diminishes her self-worth and her value of who she is, being overly-cared for.

Jim Taylor:

I try to remember not to correct unimportant things. If Geri thinks it’s Wednesday, it could be Wednesday. But the need to be right and to express contrary opinions within myself is so ingrained and been so strong, it’s been a wonderful opportunity I think to really look at, well, why is it important that Geri be corrected that it’s Thursday? It doesn’t really matter. Our life doesn’t change that much, especially in the pandemic. So we try to go with what is.

Sue Peschin:

That’s great.

Jim Taylor:

The last thing is to demonstrate your love. I think it’s so important to express how we feel about each other, to remind the person with the disease that they are so loved, touch, hugs, continually, not just at the beginning and end of the day, but to really reinforce to that person what a fantastic individual they are.

Sue Peschin:

And you as well, Jim. That’s great. So I know you both try to find humor in the middle of all you’ve been through with dementia. What is one of the funniest moments you think you’ve experienced together?

Jim Taylor:

Geri, while you think about it, I usually always try, one thing I didn’t mention is I always try to let Geri speak first because she might forget, or, if I speak, then she’s got to worry about, well, does she contradict me or make me feel bad? So it’s a good lesson for care partners to let the person with the disease speak first.

Jim Taylor:

But one funny thing, in retrospect, that happened to me, is we were in Austin, Texas, and about to speak at a large gathering of people who’d come to hear us talk, over a hundred people. And the minister was going to introduce us. And just before we went out to speak, he said to me, “Now, how long will this be?” at which I was surprised he didn’t know because we had let the church know. And I said, “Well, it’s usually an hour and 20 minutes.” He said, “Oh my gosh.” He said, “I never preach longer than 20 or 30 minutes.” He said, “You’ll have to cut it short,” and it was time to go onstage right then. And so he said, “Can you cut it to 45?” I said no. He said, “Well, don’t take it personally if people start to walk out after 30 minutes.”

Jim Taylor:

And of course, then we went the full… What is that? 85 minutes, whatever, and not a person walked out.

Sue Peschin:

Oh, that’s awesome.

Jim Taylor:

It was wonderful. And he came out afterward and he said, “Well, it seems I’m going to have to really rethink my material,” which for a minister I thought was pretty good.

Sue Peschin:

That’s great. Well, I hate ending this because I love talking to the two of you. Thank you so much for this wonderful conversation. And for joining us on This is Growing Old. That is all for this week’s episode.

Sue Peschin:

We want to ask all of you to please join us in two weeks for our conversation with Men’s Health Network. Why do men have shorter life expectancies than women? And what can men do to improve their health as they age? I’ll be talking with experts from the Men’s Health Network to learn how men can pursue healthy aging.

Sue Peschin:

And in the meantime, please visit us agingresearch.org to learn more about age-related conditions, diseases, and issues that impact the health of older Americans. And again, please check us out on our Talk NERDY to Me page, and that NERDY stands for Nurturing Engagement in Research and Development with You, and we’d love to talk to you if you’re interested. Hope everybody has a great rest of their day and thanks for joining us.