Pam Montana knew something about her memory was off. Persistently advocating for herself, she finally learned that she was right: It was Alzheimer’s.
In 2015, Montana was diagnosed with early-onset Alzheimer’s. Now, she is working to help others in the same position.
Tech-savvy Pam Montana had been working as an executive at Intel for nearly two decades when she noticed she was struggling to remember how to describe new technology she learned about at weekly meetings. At the time, in 2015, Montana was in her late 50s. She thought: “Maybe, I’m just getting old — But I’m not that old!”
Then, Montana took a trip to Hawaii with her husband, who became increasingly concerned when she repeatedly asked him the same question. Shortly after, she underwent a series of tests at UCSF Memory and Aging Center. Eventually, she learned that she is living with early-onset Alzheimer’s.
She was devastated by the diagnosis, and it prompted her to retire from her job. But, as she told Being Patient in a LiveTalk in 2019, becoming an Alzheimer’s advocate has become her new position. She’s pushed for more funding for Alzheimer’s research in front of Congress, and continues to share her diagnosis story and her experience since, and to help educate others about living with Alzheimer’s.
In 2019, Being Patient spoke with Montana about how she first knew something was wrong, how doctors determined she has early-onset Alzheimer’s, and how the disease has affected her everyday life. Watch the talk here, and find a transcript below.
Could struggling at work be a sign of early-onset Alzheimer’s?
Being Patient: When did you first notice you were having memory issues and how were you diagnosed with early-onset Alzheimer’s?
Pam Montana: At the end of 2015, I was working at Intel. Every Thursday or Friday, we had a technical training call where we’d get updates on new technology. Being a leader and a manager in my organization, one of my jobs was to make sure that my team knew what was going on and that I had updated them on what I had learned so that when they were talking to their customers, they would have all of the information. I found myself having a hard time grasping the information and keeping it in my head. That was new to me.
I remember very clearly writing down word-for-word what was being said. I’m a pretty fast writer and can abbreviate pretty easily so I was having to fake it. I would listen to the calls, write it down, and then I’d have my staff meetings, read my notes and pretend that I was pulling it from my brain. That was when I first realized that something was wrong.
Being Patient: At that time, what did you think was wrong?
Pam Montana: Alzheimer’s wasn’t on my radar at all. I wondered what the heck was going on and thought, “Oh, I’m getting old,” but I wasn’t really old. I think I was around 58 or 59 when that was all happening. I figured it was a new thing. After my husband and I moved back to the Bay Area in California, I was also struggling to remember conversations with my staff. I was literally writing down what they were saying so that next time I met with them, I could follow up with them on what their job was or what the activity was that they needed to complete.
It’s funny because, after the fact, when I went up there to empty out my desk, say goodbye, and they had a party for me, plus a walk and all this other amazing stuff, they told me that they wondered what was going on because I had been repeating myself and asking them the same questions. We’re the last ones to know we have this disease. Usually, someone says, “What the heck’s going on with you? Why are you repeating yourself? Why don’t you remember what day it is or remember me?” That’s how it all started.
Then I went to the neurologist and I forgot where I went to college and that was a big red flag. Then she referred me to a neuropsychologist and he diagnosed me with mild cognitive impairment.
Then my husband jumped in a little bit. If it wasn’t for him, I swear I still would not have been diagnosed. We were on vacation and I asked him three times within a matter of five minutes where we were going to dinner. He’s told me this story a million times, which is the only reason I remember it. He pulled the car over and said, “You know you just asked me that, right?” And I said, “No, I don’t.”
From that point on, I have never been to the doctor alone. That’s my first nugget: If you think something’s wrong, you have got to have someone with you who actually knows what you’re doing and what you’re saying or how it’s manifesting itself because we don’t really know. I had been going to the doctor by myself and was like, “I’m a big girl I can handle this. I’ve been independent my whole life.” I have a tendency to push people away sometimes, but I learned not to.
Being Patient: When you started having these memory issues at work, were you afraid?
Pam Montana: It wasn’t scary in the beginning with not remembering the technology. It wasn’t scary until it started to become real and I was like, “Oh, wow.”
Of course, after the diagnosis, I was devastated and we had a little crying moment, but I also was relieved because I knew something was wrong and no one believed me. Getting into UCSF and the research department was a huge thing because that’s how they found out that I have all the tau and amyloid in my brain. You can do a test, but I did pretty good on the memory test. But the research and radioactive dye in my brain showed very clearly that I have Alzheimer’s so that was the biggest blow to me and my family.
We were with some doctors and there were 12 or 15 people in the room when they gave me my diagnosis. I was with my husband and two daughters, and I’ll never forget that day. That was rough.
Finding Out You Have Early-Onset Alzheimer’s
Being Patient: How long did it take you to get diagnosed?
Pam Montana: Over a year. Especially for a neurologist, you don’t get an appointment in like a week. They are seriously backed up. It’s, like, six months down the road or so that you get the appointment. Then you meet with them and you have to meet with the neuropsychologist, and again, that’s a few months out.
Once I met with them, he agreed to study me, so to speak, or have me come back. Then that was another few months.
At that point in time, I was on sabbatical. That was the end of 2015 so that was kind of a blessing. At the beginning of 2016, I told my boss that things were starting to change and I was going down the path. I went out on short-term disability. I just couldn’t perform and I didn’t want to mess up or everybody to find out and be talking about me behind my back or anything, so that’s when I went out on short-term disability with the beginning of 2016 and ultimately, that turned into long-term disability and of course I never went back.
Being Patient: Now that you’ve been living with an Alzheimer’s diagnosis for about three years, what have you noticed about the progression of the disease?
Pam Montana: It’s not like an up-and-down progression where sometimes I’m OK and sometimes I’m not. Mine is like a slow landing of an airplane. Things have definitely changed and gotten harder. If my daughter or husband were here they would give you a lot more examples than I could. It’s definitely gotten worse. Things have gotten harder.
The most frustrating thing to deal with right now is my executive function and multitasking. A couple of months ago, I couldn’t remember how to copy and paste a document and I was devastated because I’ve been in technology my entire life, not just at Intel, but at NCR and AT&T. I’d been using a computer since they essentially existed. I can still type and write emails, but there are certain things that I’m like, “Oh wow, I forgot how to do that.” That’s been rough.
I drive, but visually, things are a little bit different. I only drive where I’ve been before. I can’t multitask. I can’t drive and have navigation on. Theoretically, I could, but I don’t.
Thankfully, I’ve lived here forever, and I go where I’ve gone and could walk or drive to those places blindfolded. That’s the rule of thumb I’m using right now for my driving and recently, I passed the written test, so I’m legally able to drive as well, but I feel like I’ll be self-monitoring that. That will probably go next, but hopefully, not for awhile.