Interview With Nia: Living With Early-Onset Alzheimer's Disease

For this article, we interviewed Anitra Mostacero, aka Nia Mo. Nia is an AlzheimersDisease.net community member. She spends much of her time volunteering and as an advocate sharing what it is like to be diagnosed and living with early-onset Alzheimer's disease at 42 years old.

Diagnosed with early-onset Alzheimer's

Tell us about your diagnosis. Were you surprised? Did you notice symptoms early on?

Yes, I noticed symptoms early on, like forgetting how to crank up my car, forgetting that I was cooking on the stove, and getting lost on the way home.

I lived by sticky notes and lots of calendar reminders. I was in the military and was messing up appointments. I had erratic behaviors such as walking out of and missing meetings. I actually felt like my troops and commander were taking care of me more than I was taking care of them.

I actually thought that I had a brain tumor, so learning that I had early-onset Alzheimer's was a mighty blow. For me, having a brain tumor meant that I could have the tumor removed and go back to normal because I had been so "off". But having Alzheimer's meant that I was going to suffer, lose memories, and lose all the things that I love slowly and progressively. It's terrifying.

When I was diagnosed my neurologist told me to get my affairs in order, watch the movie Still Alice, and get in touch with the Alzheimer's Association. He actually seemed more bothered by the diagnosis than I was. I wasn't really processing things until he told me to get my affairs in order. Those words seemed very final to me - terminal. I was now terminal, and it was terrifying.

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Living with early-onset Alzheimer's

How has your life changed since you were diagnosed with Alzheimer's disease?

My life has changed significantly since I learned my diagnosis. I spent the first year in a deep depression, mourning everything I felt that I would lose or things that I had already lost, such as my short-term memory, and diminished capabilities like working.

I always loved working and having a purpose in life, and those things mean so much to me - I love helping people. I have learned that stress is the ultimate enemy, so I lead a very stress-free life as a retired military person. I also take the time to smell the roses, whereas before I used to multitask and was very busy all the time. I am no longer able to multitask, and I take a simpler approach to life needs.

I spend my time volunteering. I called myself a professional volunteer because I'm able to make my own hours and not stress out so much about the things that I'm not able to do because volunteering focuses on the things that you can do and it gives life so much purpose.

Stigma and Alzheimer's

Do you experience stigma when you tell people about your Alzheimer's diagnosis?

Yes, I often experienced stigma and have been told that I don't look like I have Alzheimer's or that I am "not demented," I couldn't possibly have dementia. I'm one of those people that look even younger than what they are, so that is another challenge. I even had a doctor at the VA tell me that I was not demented so I couldn't possibly have dementia because at that moment in time I was doing fine. It was such an injustice for me and extremely insensitive.

I also feel that as a Black woman or a Black person, we are not heard or treated for dementia or dementia symptoms as carefully as people of other ethnicities. I am very blessed with a medical care team that I can trust, but I have experienced stigmas. It has been heartbreaking. Even applying for social security and having social security tell you that you can still work, they don't understand the nature of this disease.

For those reasons, unless I'm advocating, I no longer tell people that I have dementia. I simply say that I have memory problems or that my short-term memory is bad. People seem to understand that a little bit better. My choice to not tell people doesn't help the cause, but it does help me. Eventually, I will be a little bit more open outside of advocating, because I feel like it's the only way people will actually learn about my disease and learn that it's not just an old peoples' disease, but that is my cross to bear.

Support

Do you feel well supported by your doctors and family?

I have an amazing medical care team and my family is very supportive, especially my son. I feel like it is very important to not be alone during this journey, and I'm very blessed. Alzheimer's has brought my son and me closer because now we focus on making memories and enjoying our time together even more. He lives in another state, so we talk every day in an effort to keep our memories and our relationship thriving.

My best friend is also very active in my care. We talk every day, just like my son, and they help me keep a pulse on my decline and abilities. They also lift me up - my greatest cheerleaders! My father is also very active in my life, and we have our routines. I'm very engaged with my family and I love it!

My neurologist is remarkable, as are my primary care manager and social workers. I feel like because of my age they take a special interest in making sure that I have everything that I need, including cognitive tests every 6 months and lots of resources. Whenever resources come up, my social worker emails me. I'm very blessed.

A full life with Alzheimer's

What do you want other people diagnosed with Alzheimer's to know?

I want other people diagnosed with Alzheimer's to know that you can still have purpose and enjoy life. Life is not the same as what it was before for me because I was a mover and a shaker, but it's morphed into something different and more beautiful.

I now take the time to enjoy the little things that I took for granted, and life means so much more. Relationships mean so much more. I don't take anything for granted. Although I no longer work, I take great pleasure in having a purpose in volunteering. I would have never thought that my life would look like this, but it's actually quite full. You can have a full life with Alzheimer's.

I also paint, work out, and volunteer at church and the Alzheimer's Association. The focus is self-care, to not only survive but thrive with this disease.

Caregivers should know

What do you want caregivers of people with early-onset Alzheimer's to know?

I don't have a caregiver, but if I did, I would want my caregiver to allow me to have as much independence as possible for as long as possible. The cruel reality is that this disease robs you of so many things that it's important to keep as many abilities active as possible.

I would also like the caregiver to know that planning is imperative. I'm so thankful that my neurologist had me put my affairs in order because even now I couldn't remember everything that I placed in order 4 years ago. My memory is getting worse, but thank God I put everything in place while I still had a working memory.

That is so important to put things in place while you still can to ease the burden for those you love.

Everyone should know

Is there anything that you would like to add?

I would like people to know that this is not a young person's disease. It's brain atrophy. And it's progressive, so it doesn't start in late stages, it starts earlier in life. We need to pay attention to the signs earlier so that we can come up with a cure or at least something that stops progression.

If we only focus on later stages, we are doing everyone a great disservice. Although memory problems and coordination problems may not be Alzheimer's or other dementia, it's so important to get medical assessments to rule out the symptoms.

Are you living with Alzheimer's and looking to connect with others? Reach out in the forums.