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Changing the Outlook on Alzheimer's....with Hope, Humor & Help

My name is Tracy Mobley, I am 41 years old and I was diagnosed with Early Onset Alzheimer's Disease in August 2002...I was only 38 years young. Prior to the year 2002, our life as a well kept, well organized and very energetic upper middle class family had began to take a new direction on the path that we had been traveling.

In 1985, I was trained as a Nurse Technician here at Saint Francis Hospital where the ICU became my home. Eventually I would move back to Missouri, where I was originally from. Once again, I found my home in the ICU at Cox Medical Center. Over time I began to lose the capability to perform my duties at work. Duties that I had performed for 16 years of my life were becoming foreign to me. I was forgetting very important decisions in our life and was quickly becoming a challenge for my family. This was only the beginning to the nightmare that lie ahead us. I was told by my Neurologist that I could no longer do my job as I was now a liability to the hospital.

The person that I was, was quickly becoming a stranger to those that I once knew. The high expectations that I had held for myself as a wife and a mother were quickly being swallowed up into a world of forgotten words, forgotten decisions, forgotten appointments, forgotten places, forgotten voices and even for a brief time, forgotten faces of those closest and dearest to me.

We had no idea that as the road unraveled before us, there would be no return to the once wonderful life that we had known. From one Doctor to another I was treated for stress and then depression. One Doctor even had the nerve to tell me to quit my job and leave my husband and my problem would be solved. Of course, when I offered to move in with him so I would have some form of support and companionship he offered me another pill. I was soon referred to a Gynecologist and was told that it was probably hormone related and was told that I needed a hysterectomy. That would at least explain my changing personality, the forgetfulness and mood swings. From Doctor to Doctor to Specialist to Specialist and soon a Psychiatrist who could see that the only depression that I was suffering from, was from being shifted from one Doctor to another in search of an answer. She could see that there was obviously more going on than what met the eye. She referred us to the Mayo Clinic in Rochester, Minnesota. We spent about a week there and during that time I was put through a battery of tests. One of the tests was the Neuro-psychological exam, a test that consisted of educational skills, perception, comprehension, reasoning and fine motor skills. That test showed much decline in my cognitive abilities and showed an IQ of only 83......I knew that with my education and work experience that I was much more intelligent than that. I was also put through several MRI's that showed atrophy and several lesions in my brain. A large part of the frontal lobe of my brain had been affected.

After we went back for the results, I was given the diagnosis of Organic Brain Disease. We were sent back home in search of a Neurologist that was as capable of caring for me as they did. Soon after returning home, I was blessed with finding a very knowledgeable Neurologist. Within time, he too would concur with the diagnosis. His official diagnosis would be Early Onset Alzheimer's Disease, etiology unknown. This would become a new stepping stone for my family and I as we ventured into the world of the unknown.

We suffered through anger, tears and more depression. From my point of view there was really never a question of why, but rather where do we go from here? I called our local Alzheimer's Association in Southwest Missouri and we were introduced to what would now become our world. Within time we were able to learn how to cope and put our life into a new perspective. A perspective that not only was, but proved that there was indeed life after Alzheimer's.

During those couple of years prior to getting a diagnosis, I kept a journal that chronicled our lives. A story that would soon become known to the world as Young Hope. Through this story my hope was to bring more awareness not only to Alzheimer's Disease, but Early Onset Dementia as well. And also to let other's out there that had struggled as we had, know that they were not alone on this journey that they now faced and to hopefully give them direction as to where they would go from there.

The progression of this disease is different for each person Especially Early Onset. Our symptoms present differently as we are still in the prime of our life so to speak. We are parents with young children still at home, we hold jobs in the workforce, so therefore our stresses are much greater than a person over the age of 65. But some of our symptoms present much the same as a later stage individual as we have "good days and bad days". We tire easily more easily and our functioning and cognitive skills begin to slow down.

The stories that I am going to share here with you are recaps that my family has shared with me, as I no longer have the capability to retain the occurrences in my life. I ask each of you to listen with understanding and an open mind. As you are listening and the thought comes to mind that these things can happen to anyone, remember....we are anyone.

Up until recently, we lived way out in the boonies of Southern Dallas County. So far that our private drive was named, Coyote Trail. Several days on our way to town we had passed by this house and they had placed one of those huge commercial size trash dumpsters in their driveway. As we passed by, I turned to my husband and said, "My God they must have a dirty house!" he gently explained, "Honey, they are putting on a new roof and remodelling the inside of their house." Here's your sign! Lately, my husband is getting to where he is not sure if taking me out in public is a good thing, as he fears for his own safety. We were standing in line at a local Pizza Hut and there was this huge lady in front of us and I turned to my husband in a not so quite voice and said, "Is my butt as big as her's?" He tried to quiet me as we turned and walked away. He squeezed my hand and put his finger's to his lips, "SSSSSHHHH." Once we got home and I looked in the mirror, I realized that we could have been twins! Our son still gets a kick out of finding the peanut butter in the refrigerator or the dish towels in the freezer. I have tried to explain to him that "Freshness is quality." He chuckles as he knows that his Mom has lost a marble or two. But in all seriousness, when these things happen, we have to try and take them with a grain of salt so to speak as this isn't the person that you once knew that is speaking, but rather a person that is quickly losing their executive functioning and comprehension skills.

There are often times that we become depressed and want to quit struggling for tomorrow. I say "We", because this disease affects the whole family, not just the person with the disease. There are many times that I have wanted to quit and actually fought over taking my medications, as I wanted all of these horrific changes to stop and I felt that was my only way of control. Just a short time without the medications means the difference between some independence and no independence at all.

Over time, we realized there was a reason and we had a mission. I am not here to brag about my accomplishments and goals, but rather give you an idea of what a person with dementia can do with their life, if it is caught early and they are put on an effective medication regimen.

After Young Hope was written, our story began to not only Surface through the media, but it would take National and International journeys as well. In 2004, I created a brochure for Early Onset Patients that is now being used in New Zealand. The last 3 years we have lobbied at our State Capitol in Jeff City, not only to share our stories but to ask for much needed funding for research. We were also honored by Receiving The Proclamation of Advocacy Award which is a very prestigious award that speaks for all of your hard work in fighting this disease. Last year, we also had the privilege of traveling to Washington D.C. for Public Policy to speak before Congress, the NIH as well as Chapters and Advocates from across the U.S.. I have served on several Advisory Committee's and spoken at many conference's with many more yet to come. I have also created my own Online Support Group Dementia Rescue, which has become a second home to almost 400 individuals that includes People with Dementia, Caregiver's and Professionals from around the world. With the help of our 11 year old son Austin, we have just released a children's book from a child's perspective of the disease. I Remember When explains in the simplest of terms of a child's understanding.

Finally, I am here today with what I feel is my greatest accomplishment of all. With the help of family and friends from around the world, The Dementia Memory Quilt - A Reason To Remember was born. Unfortunately the quilt was unable to make it here today however, there are several individual's that were only in their 40's to early 50's when they passed with dementia. The purpose of this is to show that Alzheimer's Disease or any type of Dementia for that matter has no boundaries as it can happen to anyone at anytime. The quilt will be presented at the Dementia Care Conference and donated to the National Alzheimer's Office in Chicago where its final resting place will be in the Greene-Field Library. The purpose of that is to be a constant reminder of the faces of those with Early Onset Dementia until someday a cure is found. So as you can see, I am a survivor of Alzheimer's Disease not a victim.

Of course I could not have done it without my supportive and loving husband Allen by my side. The purpose of all of this is to show you that there is in fact, life after Alzheimer's. It is up to you as an individual or even as a family as to which path you follow and how you use what time you have left.

One very important thing that I want to make clear is that this disease is no bed of roses, especially for our Caregiver's, which in most cases is our spouses. This disease not only takes away who we are, but who we were. They long for the person they married, the person that was sweet, kind, loving and always put others first. They now live with a stranger who is many times bitter, cold and selfish. But there is no one to blame as a stranger in the night took the very heart and soul of the one you love.

Denial is a very powerful weapon, one that can be used incorrectly and cause much devastation. Not only can our families be in denial of our disease but our Professionals as well. It is the Professionals in the medical field that we look up to when we have health issues. We share our symptoms with them, we tell them our stories, many times very intimate parts of our life. It is they, whom we look to for answers. There are 7 stages in this disease and up until recently, people were not being diagnosed until the latter stages of the disease. As a person with dementia myself, I can tell you that living in the middle stages of this disease, where I am currently, is not a sentence I would even wish on my worst enemy. Knowing on a daily basis that you are slowing losing your mind and are grasping for whatever is within your reach, keeps slipping away and there is no stopping it, is heartbreaking, not only for us, but for our families as well. At the least, no matter what our age is, color or background, we should be treated with dignity and respect. To each and every professional here today, I would like to say, "Give your patients the benefit of a doubt when they come to you. Take their complaints seriously. That little black book that you carry in your pocket doesn't hold all of the answer's. Each individual is different, just as in the early stages, the symptoms may present just alittle differently. Don't let their age play a factor in the decision of their diagnosis, let the symptoms and tests speak for themselves, after all, you can't fool an MRI or a PET. We have wonderful medications that are on the market, that can give us a better quality of life, even if only for a short time. Think for just one moment, what if this were your loved one or even yourself? Wouldn't you want the chance to have a say in what remaining time that you may have left?

It has been 4 years since I was placed on Exelon and 2 years since I was placed on Namenda. I am now in the early to middle stage of the disease. My system is now becoming immune to the medication's and the benefits are becoming less. Daily we see signs of progression and decline in my abilities, however, we continue to speak out and hopefully educate not only the public, but our Professionals as well. Once again, I beg you to please, listen to your patients ...one day it could be you.