As our own story reflects, it took several years and a few life challenges to get to Gary’s diagnosis of Early Onset Alzheimer’s. Once he was diagnosed, we reached out for help because that is my nature and I was desperate for understanding and connection. But even then, the first place I went to for support wasn’t a good fit for me and I was fortunate enough to be referred to the Southland Chapter of the Alzheimer’s Association. I’m not sure I would have called them on my own. I was given the name of Amy Landers at the Alzheimer’s Association and found out that a support group called the “Memory Club” was going to be starting. We had to wait several months until enough people signed up to begin the group. Our group was comprised of 15 people, 7 couples and one individual. If you stop and do the math, there are approximately 20 million people here in Southern California and with all of the families being affected by this disease, 15 people is not even close to being a tear drop in a very large and growing sea of those that are already affected by Alzheimer’s or any other form of dementia. Very few people even know how to reach out for help. Most families are trying to deal with this disease alone and they don’t have any idea of what to do or where to go.
I reached out to the Alzheimer’s Association in February and by May there were finally enough people to start a group. One couple drove for over 2 hours one way to come for the support needed. From the very first day, the connection was welcoming and powerful. We have become a group that still socializes outside of our regular meetings. It brings a sense of relaxing normalcy to our lives. An outsider would never know what we are going through. Until Gary and I met others in our situation, our social life no longer existed. We felt alone and isolated, bewildered, frustrated and as if life was leaving us behind. Looking back on that period, we can now say that we felt like a subset of society and we didn’t understand why or what was happening. Now, as we meet more and more people affected by this disease, there is always a common thread and a very powerful bond. We feel as if we have found our long lost tribe! Our individual situations may be different, but how we and our new friends feel is always the same and we are so delighted to be able to be in the company of those who can relate to what we are experiencing. We are often misunderstood too, because we all look so healthy, vibrant and young! Oh how looks can be deceiving, especially in a society that relies on visual cues to form opinions of people.
Our own experience with Early Memory Loss and the growing number of Baby Boomers who are and will be affected is what compels our inspiration and commitment to this project. Our mission with Alz Across America is to help connect people to people by creating awareness, understanding and unity with those who can relate to these common feelings and experiences.
We are reaching out to people through social media and face to face human connections. It seems that everyone knows someone or knows of someone who may be showing signs of Early Memory Loss. We are starting locally, but our overall vision is to create micro communities by travelling around the country in a Big Purple Bus, initiating conversation and facilitating small social hubs and opportunities for people to meet others whose paths would not have otherwise crossed. We want to help people regain a sense of normalcy in their lives so that they may be able to see life with a new perspective. We are committed to dedicating our lives to help raise awareness and direct people to the resources that will provide answers to help them cope with their situations and enrich their lives. We see ourselves as a tributary outreach program of the Alzheimer’s Association to seek and find people who wouldn’t otherwise reach out for help by themselves. Alz Across America brings people out of the shadows and lets them know that others who are affected by Early Memory Loss also share the feelings of loss, fear and helplessness. They need to know they are not alone and there are resources available to help them cope and create better lives for themselves. People affected by Early Memory Loss can still lead worthy and purposeful lives. We want to help shine a light on the various possibilities that await them after their diagnosis and help them realize that having a life with Early Memory Loss can still be fulfilling, hopeful and inspiring.
We see ourselves as messengers, paying it forward to foster more messengers in micro communities across the country, visiting those newly formed friendships in the Big Purple Bus to help to connect the dots of hope to a disease that is still widely misunderstood.