The journey to a diagnosis is one of confusion, fear, frustration and blame because typically Alzheimer’s is the last thing on the radar for anyone in the family.  We are a society of over stimulation, so it is easy to get caught up in the stresses of our daily life which may slowly (or in some cases or quickly) become a bigger and bigger ball of symptoms until something in life implodes. 

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.

Gary - I think I’ve always been a sensitive and oftentimes emotional man, but I believe I’ve been even more so over the last few months, or maybe even years.  For one, I am sad that I can’t work anymore.  On top of that I don’t have many “guy” friends to hang out with here in the Beach Cities southwest of downtown Los Angeles.  My best buddies really are the ones I made when I was a kid living outside of Cleveland, Ohio.  I’ve known some of these guys since kindergarten, and we have had several “guys” reunions over the years. But only two of those guys live in California. One lives over two hours away near Santa Barbara and he is the CEO of a national company so he has very little spare time. The other lives and works in Laguna Beach, about an hour or more away, depending on traffic. He and I get together more often, but still only every 4 or 5 months or so.  The guy friends I have near where we live are busy with work and family – all being younger and more mentally fit than I am at present. 

One of the reasons I miss work so much is that I typically made friends at work and working is something I’ve done most of my life.  I started working when I was 13 during the summers at a place called Wiegand’s Lake Park, a private, family-run park that specialized in hosting corporate picnics for employees of companies in and around Cleveland. As the youngest of five boys, I followed in the footsteps of my older brothers by working there. I was paid 35 cents an hour for, sometimes, back-breaking work.  Among other things, when a event was being held I had to walk around with a cardboard box under my arm picking up all “waste” the size of a match stick or larger including dirty diapers and other equally gross stuff. Even worse, some people seemed to enjoy watching me collect their trash. I even remember that some people would throw their cigarette butts and other junk on the ground just to see me bend down to pick it up!! On days when there was not an event at the park, I did other things like painting the exterior of buildings, mowing lawns, and numerous other tasks. I remember one time the lake was drained in order to dig out the mud, muck and other crud that would build up over time. It was on that job that I lost my balance pushing a wheelbarrow heavy with that muck and I badly tweaked my back. To this day I still have back problems that originated with that mishap. I actually look back at that job fondly, as it was my first, and I’ve had many since then but will not likely have another. With my diagnosis of Alzheimer’s disease, without a miracle I know I will never be in the workforce again. 

I know that people really look forward to retiring and starting a new life on a “permanent vacation”.  That’s great if you can afford the lifestyle and have the means to do what you want to do. One of my problems is that our life is limited because of my inability to work and we continue to spend our life’s savings in order to meet our monthly obligations. Losing two jobs in 4 years and moving several times has greatly impacted our lives. Since I was an attorney I know some people think that I must have made lots of money – after all most attorneys make lots of money suing people, right?  Well, that may be true for some attorneys, but I used to tell people that I was one of the “good guys” because I didn’t do litigation!  I specialized in transactional real estate and I worked as an employee for various large companies documenting all things related to the companies’ real estate holdings.  I created everything from brokerage agreements, to leases, purchase documents, construction documents, etc.  Yes, I did make decent money, but not like partners in large or even semi-medium sized law firms who are doing litigation and/or having multiple clients. I can’t complain though, or at least I shouldn’t. I had a pretty good run and had fun doing it. I just wish it wasn’t over. These days I don’t know what to do with myself half the time and I don’t feel productive. I can only ride my bike so far and so often because of my bad knees, and I can only work out so many times a week before I get bored with the same old routine. I miss the connections and sense of community as much as I miss the income and the sense of being useful.

Fortunately the Southland chapter of the Alzheimer’s Association has helped to fill that void for me. Lisa and I have made some very good friends through the Association, both with some of the staff as well as several of the caregivers/care partners and those with the disease. The staff at the Alzheimer’s Association is incredible and the organization has helped us a great deal through its programs and events. One of the most impactful events was when Lisa and I were on a panel on stage and spoke in front of a large audience about our current lives at the “Early Memory Loss Forum” which was held last year at the Skirball Center in Los Angeles. We have made several friends through the various programs they sponsor at the LA Chapter’s office. We first started going to the “Memory Club”, an eight week program with meetings every two weeks. The first time we went I was very reluctant and didn’t really want to go. I think I was in denial, and also afraid of what would be said and done.  It turns out it was one of best things we have done since I’ve been diagnosed. We are now still going to the Association as part of the “Grad Club”, which is sort of an alumni group for those who go through the Memory Club. The bottom line is that the Alzheimer’s Association has been a lifeline for us as a resource, a means to meet others in the same situation and a way to branch out into doing even more to combat this insidious disease. This is a major reason why Lisa and I have created Alz Across America – to show by example that while it is a shocking change to one’s lifestyle, a diagnosis of early memory loss does not mean one needs to be shunned into the shadows to deal with all of these issues alone.  The Alzheimer’s Association helped us get to that space and we want others to know that help and understanding are available to them.  Through Alz Across America, we are now building new connections, and creating communities of support, and helping to provide a means for new friendships to develop. We are creating these structures here in our immediate community in Southern California by starting coffee groups and walking groups just to name a couple of examples.  We hope to obtain a big purple bus to travel around promoting awareness and fostering communities of support in California and eventually throughout the country as well.  This gives me purpose and hope, and is really what keeps me going from day to day.  I try to do my best to make each day count and to be as productive as possible so that I feel that I am part of the solution and not part of the problem.
GB