Sep 012016
 

I’ve been a proud team captain for Walk to End Alzheimer’s for five years. I walk for all those living with Alzheimer’s, including myself.

I started having trouble with my memory in my 40s. I worked in a doctor’s office as a nurse and suddenly I forgot how to calculate inches to feet in height. Then, I couldn’t remember what shots were given at what age. Eventually, I forgot how to spell the doctor’s name.Walkimageblog

My family doctor performed a mini dementia test and referred me to a memory center, where I was diagnosed with younger-onset Alzheimer’s. I thought of my daughter – am I going to see her get married, or see any grandchildren grow up? I’m 56 years old, and my mom is my caregiver. That is one truth I never thought was possible.

My sister reached out to the Alzheimer’s Association and I was connected with someone at my local chapter. I saw that there was a need for people who are in the early stages of dementia to meet and talk so I started the first Memory Cafe in Lancaster County. I’m also a mentor, speaking to people who are newly-diagnosed, and I raise awareness in the community by fundraising. One of the biggest ways I fundraise is through Walk to End Alzheimer’s.

I enjoy watching Walk to End Alzheimer’s continue to grow every year. Seeing donations come in that will support caregivers and those living with the disease means so much to me. Every step taken during Walk to End Alzheimer’s is a step closer to a cure, no matter where you walk. I’m lucky to use some of the skills I used as a nurse to encourage others to join me and to educate the public. And I’m not only helping them – they are helping me.

Here is what I know: Alzheimer’s is not just an old person’s disease. Alzheimer’s is not funny. Alzheimer’s is a disease of the brain, not a mental health issue. Alzheimer’s doesn’t care who you are or what you do. Alzheimer’s affects us all.

Alzheimer’s diagnosis doesn’t mean you have to stop living. You still have a lot to offer to the community and a voice (and feet!) to help bring awareness to the disease. This is why I walk to end Alzheimer’s.Mary Read 2015 ESAG Headshot

 

About the Author: On September 24, Mary Read will walk in Lancaster, Pennsylvania to raise awareness and funds for Alzheimer’s research, care and support resources for local communities. She encourages people with Alzheimer’s and dementia to enjoy life every day. You can visit her team page here

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  5 Responses to “Every Step Is a Step that Matters”

  1. I’m walking in Yaphank NY. My wife, Lorraine, is 62. She was diagnosed six years ago and has advanced Alzheimers. She fell five weeks ago and broke a vertibrae in her neck. She us presently in a nursing home. I visit her every day but I’m not sure she recognizes me anymore. It’s devastating. We must find a cure.

    • The first step for cure in your actually situation is, she has to know who you are. When you come in her room you have to say: I am your husband, my name is….., my nickname is….. No other sentence. After short time you say the same in the her near, not touch her. Because it can be she can be full of fear. The next information is, to give her information, she is here safe . So she gets information and she can come out of fear. After a short time, you can touch her one hand and can hold her hand a little bit longer. This is for feeling safe. She can not hear your story, because she is in status to find herself. So you have to give her information in slowly and speak in a slow voice , who she is. But you have to say in the first time, I am …. the full name of your wife. After a short period ,say the name of her, like you have always said it. So the brain has information for connections, associations in the brain and your wife can take more information, that you as husband are there.After this you can only speak of things she can know. But she can not respond like you are thinking. It can be with nonverbal systems, or beginning of a word. All the visitors have to do the same, also the nurse and doctor.I am a therapist and do my work for long time, I have written books, I was at the Alzheimer Association Conference in Toronto 2016.

  2. Mary, reading your story and all of the tremendous effort you put into the cause as a person living with the disease, brought me to tears. My husband was diagnosed at the age of 53 with Younger Onset. That was 41/2 years ago. This is “Walk” season and we will be participating in our fifth walk on September 17, in Albuquerque. It is the most gratifying way to recognize, support, and advocate for the countless number of individuals living with the disease and their caregivers. May your unwavering and courageous mission to stay involved in this effort continue on and your beautiful reminder to grasp each day and live it with grace remind us all to fight for a world without Alzheimer’s. You have my upmost respect.

    Robyn Esquibel

  3. Way to go Mary! You are an incredible example of what those of us diagnosed with the disease are capable of. to all

  4. I am walking in Colorado Springs, CO. My husband was diagnosed at age 62. It has been almost 16 years. I had to place him 3 1/2 years ago. I am walking for him and to raise money for more research and trials. I worry about our children and grandchildren. There was Alzheimer’s on both side of my husbands family. I pray we find an answer soon so that no one else has to suffer with this horrible disease,

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