SuAnn Cobb was living with multiple sclerosis and working as a pediatric nurse when she started noticing problems with her memory. Here’s her story of being diagnosed with mild cognitive impairment and how she’s advocating for others living with memory loss.
This article is part of the Journey to Diagnosis series, produced by Being Patient with support provided by Eli Lilly.
Living with multiple sclerosis can be a challenge in and of itself. For some people, multiple sclerosis also can be a factor in other issues, such as mild cognitive impairment and, later, dementia. This was the case for SuAnn Cobb, a Tennessee-based pediatric nurse.
Cobb started noticing problems with her memory several years before she eventually retired. After retirement, as she continued having problems with word-finding, she pressed her neurologist for testing.
These tests confirmed the connection between Cobb’s mild cognitive impairment and her multiple sclerosis. Now, several years after her diagnosis, she is passionate about spreading the message that those with memory loss can lead rich and satisfying lives. She has become actively involved in support groups for MCI, and she’s taken on a leadership role as chair of the board of directors for a local support group called Sharing Experiences Together. She also co-produces and co-hosts the podcast Living Our Best With Memory Loss, where she shares her experiences and offers insights to others facing similar challenges.
Cobb recently joined Being Patient video journalist Mark Niu in a conversation about her diagnosis journey and her work advocating for others living with memory loss.
Being Patient: You were diagnosed with multiple sclerosis at 34 years old, and you had been living it for a while before you started to notice other symptoms. Is that right?
SuAnne Cobb: I’m 72 now, so I’ve had [MS] for quite a while. About 15 years ago, I began to see that I was struggling with some short-term memory issues, and I was beginning to have trouble with word-finding.
I think all of us, at some time or another, if we’re tired, stressed, or didn’t sleep well, can momentarily forget a word. Mine became noticeable enough to me and some of my colleagues that it became a running joke. I could draw a picture of the word if it was a noun; I could describe it using the thesaurus in my head, but I couldn’t think of the word [itself]. Gradually, over time, it began to be more and more noticeable.
After I retired, I pressed my neurologist, who follows me for MS, to have me tested. She actually has a clinical psychologist who comes in and does testing in her office because MS has a very high rate of folks with mild to moderate cognitive impairment.
[I’ve read that anywhere from] 40 to 60 percent of all MS patients have this, and it makes sense if you think about what MS does. There [is] the myelin sheath that covers the nerves, gets irritated and angry, and then does what they call “scleros” or scar. The messages that go down those nerves, [and] it’s hitting up an obstacle in the path.
That’s why sometimes things don’t work for us, and if that’s happening in your brain, which is where a lot of the lesions are, then it makes sense that there would be some consequence of that. That’s where the mild to moderate cognitive impairment comes.
MS doesn’t usually progress like other types of cognitive disorders, but it can certainly interfere with the way you used to function and the way you’d like to function in your daily life.
“It makes sense if you think about what MS does. There [is] the myelin sheath that covers the nerves, gets irritated and angry, and then does what they call ‘scleros’ or scar. The messages that go down those nerves, [and] it’s hitting up an obstacle in the path.”
Being Patient: What is the cognitive testing process like?
Cobb: It’s [a] battery of tests. People joke about having to draw the clock, practicing drawing the clock, and studying. A lot of it [tests] your sequential memory, recall memory, processing, and ability to problem solve. It’s a battery of tests.
It took about four or five hours to do the whole test, and I thought, “Well, if I didn’t have it before, I sure have it now.” It was exhausting to do the testing, but that’s what they do– they repeat [and] compare your scores to see if there’s been any progression.
Being Patient: Were there any early signs that you think you might have missed, looking back?
Cobb: I was pretty aware of what was going on and why. At the time, I was in more of an administrative and a manager position. [At that point in] my nursing career, I wasn’t involved in giving daily patient care. I was able to manage using some strategies. I certainly have developed more and more and more strategies as I’ve gotten older and once I was diagnosed.
I retired at 62. There are lots of ways to practice nursing, but I couldn’t think of any one area I could practice [where]if I truly forgot something, it [wouldn’t]cause harm. I felt so strongly about that. I was not going to practice a career where my MCI might be the cause of someone [being] harmed.
[Since retirement], and I’ve gotten busy with other projects that I find very rewarding. I have the opportunity to care for [people], but not in the way of managing a care plan or medications. [It’s more] in terms of caring emotionally, providing emotional support and that type of thing.
“I was not going to ethically a career where my MCI might be the cause of someone [being] harmed.”
Being Patient: Was it hard to make the decision to retire from nursing since it was a big part of your life?
Cobb: There is that, I call it, “professional co-dependence” that kind of channels you into some of these caring fields, and self-care certainly enables you to practice your chosen care profession in a healthier way. I think that because I knew, in my own estimation, I couldn’t be 100 percent safe doing it, it was easy for me to step out of it, but that didn’t mean it was easy to give up that connection I had with my career. I had been a nurse since I was 21 years old. There was always that feeling that, in my life, if I needed to, I could get a good job, I could provide for myself, and I could do all those things.
There was grief involved in stepping away from the career of nursing. I think I’m not unusual in that a lot of folks, when they retire, feel that.
Being Patient: As someone who was previously in a more care-based role, has it been strange accepting care or accepting help?
Cobb: It is. I’ve just been in the role of taking care of others, and so I do get uncomfortable when I have to ask for help, and certainly, I do have to ask for help more with my cognitive impairment. I have a wife, and she is amazingly supportive, patient, and kind to me, and yet I know it’s very frustrating [for her].
I just find that often, I tend to overdo things because I don’t want to admit that I’m too tired mentally or too tired physically. I have to kind of titrate my physical energy [because of MS], and then I have the cognitive impairment. I either titrate that energy, or it runs out, and I’m just not fit to be around after about four o’clock in the afternoon.
There are better days than others. Some days, I have a lot more trouble with my word-finding. I think it is harder for me to ask for help.
“I just find that often, I tend to overdo things because I don’t want to admit that I’m too tired mentally or too tired physically.”
Being Patient: Tell us about some of the symptoms of MCI and MS you experience and how they impact your day to day.
Cobb: I am extremely noise-sensitive, and my neurologist and I [have] talked about that. I have had [COVID-19] four times, tinnitus after the first one, which has stayed. I do think, though, [that] my noise sensitivity has been a part of my MCI because I had that prior to having [COVID-19]. I think it may have been exacerbated and worsened by having [COVID-19] and the tinnitus.
I am extremely, extremely sensitive to noise, especially sudden loud noises, but also just a real high level of noise, and one of the ways that I have developed to deal with that is I have my noise canceling ear pods, and that helps a lot. If we’re close enough, like sitting across from each other in a restaurant, I can hear that person talking, but it muffles all the background noise enough for me to be more comfortable.
I start to get very anxious in really loud environments, and I really want to leave. I want to get away from it, which makes sense because it’s extremely uncomfortable. That has not been easy. Also, if I’m in a group of people, let’s say there are six [or] eight of us [who] have gone out to eat. If more than one person is talking at a time, I have a very hard time even zeroing in on one of those conversations; it just all gets jumbled together.
I just find myself trying to smile politely and nod here and there. It’s very difficult, if not impossible, to participate in the conversation because I can’t follow any of them. They’re all talking at the same time. I think it is [related to MCI]. I have an otolaryngologist, [which is] an ENT doctor. She wants me to have a full evaluation for it from her, and then they will more than likely refer me to an audiologist.
There are some newer techniques [for dealing with all of this, such as] having a device in my ear that emits low white noise and supposedly tricks [the] brain into following the white noise and not the other noise. We’ll see how that works, but that is one of the most disturbing symptoms that I deal with every day.
My wife knows. She goes, “Okay, I’m going to print something on the printer,” because it makes a very loud sudden starting up noise that nobody else would probably think was loud, but it’ll just send me, with my fingernails in the ceiling, if I don’t know to expect it.
“I am extremely, extremely sensitive to noise, especially sudden loud noises, but also just a real high level of noise, and one of the ways that I have developed to deal with that is I have my noise canceling ear pods, and that helps a lot.”
Being Patient: You’re involved in support groups and advocacy around living with cognitive impairment, and you took on a leadership role for a local support group called Sharing Experiences Together. Tell us about that.
Cobb: There was a female attorney and a male physician who were both diagnosed with early onset Alzheimer’s in their mid-50s. They were participating in some of the Alzheimer’s Tennessee groups, and they struck up a friendship and met for coffee.
They said, “This is great, and we love it, but what would it be like if we started a support group where everybody in the group, including the facilitator, had a diagnosis of MCI?” There are lots of models of that, other types of 12-step groups, and things where everybody has an issue.
They started a group, and a friend of mine’s husband was in that group. I was sharing with her my difficulties, and she said, “I think you’d love this group.” I said, “Well, I don’t have Alzheimer’s.”She said, “I don’t think it matters.”
I started attending very early, not long after it started, and I’ve been a part of that group for seven or eight years. I am currently chairman of the board. We’re a nonprofit and have gotten a couple of local grants from Purple Alliance. We have two groups, one in Knoxville and one in the Oak Ridge area, and an online Zoom group that meets for people who either can’t leave their homes or don’t want to leave their homes.
All through [the COVID-19 pandemic], all our groups kept meeting on Zoom. We kept our community together, and so right now, we have about 12 or 13 active members in the North Knoxville group, which I also facilitate. It’s just very rewarding to be with people. We all suffer the same type of symptoms, and we may be in different phases of cognitive issues. Some have progressed, and through the years, we certainly have had members who have passed on. However, it’s just been a vital group for me, and I’ve enjoyed that. It was through that [group] that I was asked to participate in the podcast Living Our Best With Memory Loss.
“We all suffer the same type of symptoms, and we may be in different phases of cognitive issues. Some have progressed, and through the years, we certainly have had members who have passed on. However, it’s just been a vital group for me.”
Being Patient: Tell us about being on Living Our Best With Memory Loss. Did you ever imagine you’d be a multi-media host?
Cobb: I am one of the co-hosts. We have four co-hosts. Lori Stryer is the CEO and executive producer at RIVR Media in Knoxville, Tennessee, and she does all types of programs all over the world. Her husband was diagnosed with MCI due to vascular impairment. She had also met another one of the co-hosts, Denis Lowe, who you all have also interviewed.
Denis is a part of our Sharing Experiences Together support group. As it was getting started, he said, “Hey, there’s this podcast, and I think you’d enjoy it. Why don’t you come along and hear about it and do it with us?” I did, and I love doing it.
I was incredibly nervous to start with, and Lori has a way of just putting you right at ease. The beautiful thing when you’re not live streaming like we are now is you can go back and edit, or you can stop and redo a little question and get what you wanted to say better.
I have enjoyed it, and I think we’re up to over 1,000 subscribers now, and we have followers all over the world. It’s very rewarding to share.
Being Patient: What advice do you have for others navigating this journey?
Cobb: The first thing is to have a great team. [That] team is [composed of] your healthcare providers. Through some of the guests we’ve interviewed, we know that not, unfortunately, not everybody’s primary care provider is as well informed as we’d like for them to be about cognitive impairment. But keep being your advocate, or to have a loved one go with you so that they can be your advocate and get referred for testing and follow-up.
The sooner you are tested, the more [options you have] available. There are about 12 active members in our support group, and I believe five of those 12 are in research clinical trials right now. One person is having remarkable results, and [there’s the] feeling like you’re giving back to future generations. Please get diagnosed as soon as you can.
I mentioned a loved one, and whether that’s a biological loved one or a chosen loved one, have support through your friends and family, maybe your faith community, if you have one. Let them know what your needs are and how they can best support you. They’re not mind readers. They love us.
“Whether that’s a biological loved one or a chosen loved one, have support through your friends and family, maybe your faith community, if you have one. Let them know what your needs are and how they can best support you. They’re not mind readers. They love us.”
They may say, “Oh, that’s not that bad. I lose my keys all the time.” Well, yeah, it’s more than just losing your keys. They’re very well-intentioned. They don’t want us to feel bad. Yet, I think the more direct we can be with them about what we need, the better.
Find a support group of people of like mind, and Alzheimer’s organizations all over the country are a great place to start. Hopefully, they will offer you a wide menu of what you could participate in. The beauty of the tragedy of [COVID-19] was that [people got comfortable with] Zoom, and I think people are much more [willing to participate]in things like we’re doing today.
What I tell people about cognitive impairment is that we need to eat brain-rich foods, lots of vegetables, dark leafy greens, and other things. We need to move. We need to keep moving as much as we can in terms of exercise we enjoy, and we also need connection. That, for me, has made a difference and has added a lot of richness to my life.
Katy Koop is a writer and theater artist based in Raleigh, NC.