Oct 292012
 

I always say, if you’ve met one person with Alzheimer’s—then you’ve met one person with Alzheimer’s. Many people don’t realize how each individual has a unique experience with the disease—unique symptoms, a unique path to diagnosis and unique needs.

November is National Alzheimer’s Disease Awareness Month and National Family Caregiver Month, and as a member of the Alzheimer’s Association National Early-Stage Advisory Group, I’m proud to share my story to help raise awareness of disease and those affected.

A year ago, at age 62, I was working as a third-grade teacher when I noticed I was having problems with balance and gait. As a two-time breast cancer survivor, I went to see my doctor, who suspected the cancer had returned and spread to my brain. You can imagine my shock and devastation when a series of tests revealed I had Alzheimer’s disease.

It took me a long time to come to terms with the diagnosis, but I found solace and support in the Alzheimer’s Association. I decided that while I was still able, I had to “Get real” with the details of my diagnosis and start planning for the future.

Although I retired from teaching, my background in education has been a great benefit in my journey with Alzheimer’s. In my previous job as a principal, I adopted the habit of taking copious notes, writing down conversations I had with parents, students and teachers. Now, I use that same practice to stay on top of my day-to-day activities. I write down everything in a notebook I carry with me: what I did, who I saw, what I said, the names of doctors and books I want to read. I stay active in the field of education by tutoring and working at after-school programs.

My life with Alzheimer’s is somewhat unique because I live alone. To keep myself safe, I have routines—I have a specific place where I keep my keys and I have a process to make sure the stove is turned off every night. Right now, I am still in the early stage of the disease, and very independent.

I’m grateful for the opportunity I have to plan for the future. I know there will come a day when I can no longer care for myself or manage my own finances. My brother-in-law has power of attorney, and I’ve started to visit long-term care facilities in my area.

I’m fortunate to have found a steady source of support in my friend Jean. We taught together for a couple of years before my diagnosis, but I don’t know what I’d do without her now.  She keeps me social by inviting me to everything—and I mean everything! We read books and go to the movies together and discuss them. She sends me notes about things I might find interesting—just this morning, she emailed and told me to read the opinion column on the stimulus plan in our newspaper.  She makes me homemade chicken rice soup and chili. We have tickets to see “Jersey Boys” together later this month. 

In short, she is a beautiful person, inside and out. She nurtures my soul.

This November, I’m thinking of all of those facing Alzheimer’s, going through their own unique experiences with the disease—and of the many caregivers whose love and support is the most valuable gift of all. 

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Janice Pfeilschifter lives in Aberdeen, North Carolina and is a member of the 2012 Alzheimer’s Association National Early-Stage Advisory Group. As an advisor, she hopes to share the perspective that life does not end with a diagnosis of Alzheimer’s disease.

Sep 052012
 
K_Murray_headshot

I was diagnosed with younger-onset Alzheimer’s disease in 2009 at the age of 56. Prior to my diagnosis, I was the senior vice president of operations for M&T Bank, overseeing hundreds of employees across the Maryland and Delaware regions.

I still run into those people — former employees or co-workers — at the grocery store or out at restaurants. I remember faces, but not always their names. Often, I notice that people make eye contact with me and then turn around the corner rather than say hello. Maybe they are just uncomfortable. Maybe they don’t know what to say.

There are times when my husband, Robert, and I are out and friends will ask him, “How is Kathy doing?” He will say to the person “Let’s go talk with her.” Most individuals don’t know what to say and it may be easier for them to avoid me.

I want people to know the truth about Alzheimer’s disease. That it’s not a mental disorder or “just a little memory loss.” It’s the most common form of dementia. And it’s a progressive disease.

I speak up and tell people about my diagnosis and take as much time as I need to educate them. I want them to have a better understanding of Alzheimer’s. I want them to know there is much more to the disease than the late stage. Someone with Alzheimer’s doesn’t have to be in a wheelchair or lying in a hospital bed; they can be like me, still able to travel and live life to the fullest. Maybe they are not at the top of their game, but they have found ways to adapt. Like me, someone with Alzheimer’s can still be functional and independent. I still have so much to contribute.

It’s not always easy to speak up about Alzheimer’s. Even now, several years after my diagnosis, it can be very difficult for me. 

Last week was Robert’s birthday. He received a card from friends that read something like, “At your age, we knew you wouldn’t remember we sent the same card last year!” Robert and I just sat and looked at each other.

Kathy Murray is living with Alzheimer's disease.This isn’t an issue about a level of education or intelligence. We’re fighting against popular culture. This is about awareness and education around this particular disease.

Keep talking openly about Alzheimer’s, and little by little, it will get easier. Sometimes you have to put yourself out there, and that’s not easy for everyone. Make sure your friends and family members are educated about the disease. They can speak up on your behalf, too.

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About the Blog Author: Kathy Murray is an alumna of the national Alzheimer’s Association Early-Stage Advisory Group (2011). She lives in Frankford, Del., with her husband, Robert. Kathy and Robert have two sons, Robbie and Bryan, and six grandchildren.

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