If you want to know what it’s like to live with Alzheimer’s, best to ask a person who is. WAM Advisory Board member Pam Montana is this week’s expert.
Read the Q&A with Pam Montana below.
WAM: You were diagnosed with early-onset Alzheimer’s at 61 when you were still working as an executive in Silicon Valley. What made you suspect that something was wrong, and what did it take to get you into a doctor’s office?
Pam: I started having symptoms in 2012. I was working at Intel and was struggling with the new technology we were rolling out. It was necessary and important for me to train my staff so they could talk to their customers about our new products. On Fridays, we got briefed on the newest technologies from the engineers.
Initially, I could listen and take a few notes and then prep my staff. But I found myself struggling and not able to remember what was being said. I had to write word for word what was being discussed. That was the only way I could remember what I needed to share with my staff. A few months later my husband and I went on vacation and I asked him three times in a row where we were going to dinner. That’s when we both knew things were changing for me and we needed to get some help.
Because I’m so verbal, I had a hard time getting a diagnosis because doctors found me highly functioning with language. But I knew something was wrong, so I went to my neurologist to see if she could help. I did well on most of the testing, but I couldn’t remember some simple facts, like where I got my Master’s Degree! She referred me to a neuropsychologist, and he gave me another series of tests and then diagnosed me with MCI or mild cognitive impairment. My husband Bob went to all these appointments with me, and after the MCI diagnosis, pushed for a referral to the UCSF Memory & Aging Center. That’s where I got the PET scans and the final diagnosis of early-stage early-onset Alzheimer’s.
WAM: How has life changed for you since being diagnosed—and how have the people in your life reacted?
Pam: After my diagnosis, my family and I were understandably very sad, but for me, I also felt validated. I knew something was wrong and no one had believed me. In fact, one of my doctors early on told me I didn’t look like I had Alzheimer’s! Well clearly, he was wrong because I did have AD. I was just on the young side of being diagnosed!
It took several days to process, but I rather quickly decided I was not going to let this bring me down. I changed all my social media platforms and shared with everyone that I had AD and that I now had a new job. That job was to help find a cure, remove the stigma and to raise as much money as I could to help with the research and programs that are essential.
I was with my husband and my two daughters when we got the diagnosis, so we’ve all been in this together since the beginning. Our family and friends rallied around us, which felt great. I immediately got connected with the Alzheimer’s Association and joined one of their “early-stage” support groups in my community. I also applied to be an early-stage advisor for the national Alzheimer’s Association, and served on the Northern California Board of Directors for the Alzheimer’s Association. When my term was up, I was nominated and selected to be on the national board of directors. I joined the WAM Board of Advisors along with Bob. All of this work– and sharing my story in order to help others deal with their diagnosis – really helped me to keep going. My goal truly is to remove the stigma that accompanies Alzheimer’s, and to let people know that you can live well with Alzheimer’s. But I could not do this without the support of my family and friends.
WAM: What do you want people to know about how to treat someone they meet who is living with Alzheimer’s? Any good tips you can pass along?
Pam: We are still the same person! Yes we may repeat things, we may be disoriented or emotional, but inside we are still there. For me, loud noises and huge crowds don’t work. Too much stimulation doesn’t work. I get headaches easily. I have to rest every single day. I’m still active and connected to the world, but I’m not able to do the things I did five years ago.
It’s important to understand what works for each individual and their diagnosis. Everyone is different, so I suggest asking them what they enjoy doing and what you can do to help them. Also, now that everyone progresses differently. My progression has been slow. Several folks in my support group who are younger are progressing faster. One of my friends is in hospice now! So don’t make any assumptions about the journey.
WAM: Not everyone is public about being diagnosed. What made you want to share your story?
Pam: I am an open book. I want the world to know that you can live well with Alzheimer’s. We didn’t do anything wrong, so I don’t think there should not be any shame attached to the diagnosis. Would you have shame if you got cancer or diabetes? I want to share my story so I can help people living with Alzheimer’s understand that there are still so many things that you can do even with this diagnosis. I am loud and proud and doing my best to educate and remove the stigma. I’ve been able to help many of my friends deal with their family Alzheimer’s issues and that feels good too. I have a blog that I’ve been writing since my diagnosis in 2016, and so far I’ve written 114 blogs which have been read by over 175,072 people! This disease is rampant, and I will do anything I can to use my voice and remove the stigma.
WAM: You have joined a couple of Alzheimer’s clinical trials now. A number of people have told us they are too scared to do so, and that they are afraid of potential pain. Any words of advice for them?
One of the most important things I’ve done is participate in clinical trials. We are lucky enough to live near USCF Memory and Aging Center, where I got my diagnosis and where I have been going to participate in clinical trials. Without clinical trials, we will never find a cure so this has been a very high priority for me and for our family. The procedure is not very invasive, but it is exhausting on the days when we have cognitive testing. It’s also a big commitment for your spouse or family member. My husband works full time, so scheduling around the trials was occasionally challenging. The medical procedure I’ve done takes several hours. There is not much pain, other than a poke in your arm. The nurses are fabulous, and they do their best to make it pain-free. But it is a huge commitment and depending on your location, can make for a long day. The hardest part for me has been all of the cognitive testing. I just finished my 2nd clinical trial. It was an Eli Lilly Tau trial. Prior to that, I was in the Roche/Genentech trial. That one was stopped due to lack of efficacy, and I was pretty upset at the time. It can be frustrating, but it’s necessary to be part of the solution. I feel good that I am doing what I can to help science further the research that might help find a treatment or cure.