Alzheimer's Advocacy Forum
Taking our stories to Washington D.C.!
#StoneBenches #TheyHaveAName #EndAlz #AlzForum #WashingtonDC #CapitolHill
This morning over 44 million people in the world greeted the day attempting to make sense of the world around them with a diseased and dying brain. 5.4 million folks in the U.S. alone have been diagnosed with Alzheimer’s disease - and this is yesterday’s statistic. Last year’s best guess. There isn’t even a statistic on us, the feet who walk beside them, impacted right along with them - those of us who serve as guides on this journey.
The Alzheimer's Association predicts by 2025, less then a decade from now, over 7 million in the United States alone, will develop this disease. By 2050, the projection rises to almost 14 million in the United States who will have the specific form of dementia known as Alzheimer’s, barring medical breakthroughs to prevent or cure the disease.
We only thought today’s statistics were staggering.
Until now our loved ones have merely been faceless statistics. Their stories must be told if we expect anything to change. They have a face, as well as a story. #TheyHaveAName I believe there is too much misinformation surrounding this disease. Too much misunderstanding. Many people are shocked to learn this disease, which apparently results in folks forgetting who we are, is terminal.
Tomorrow, eight of us will be making our journey to Washington D.C. Joining us will be the stories of Brenda’s dad, Rex, my publisher’s mother, a man fortunate to have Melva’s dedication, Michelle’s grandfather, and my own dad, mom and grandma. There is one last special man I would like you to meet.
Of all the stories we will be sharing with our nation's leaders, unfortunately only my publisher’s mother, who was recently diagnosed, and three men on hospice are still living. This distinguished trio of men, my father and two of his buddies, served our country, made a tremendous impact in this world, and are now neighbors at Memory Care.
It is impossible to relay to you what is involved in leaving them to make this trip.
Over the course of the next week I would like to introduce you to those who will be accompanying me on the journey to Washington D.C. As you will soon discover, we all have a common passion, an urgent message, and a personal story to share. I met the first gentleman I would like to introduce you to almost a year ago. Like my father, he shares a devotion for their common alma mater and served in the Air Force ROTC during college.
Rex is a dynamic, intelligent man who has accumulated numerous awards in his field. He is well known in the political arena as well. One of our United States senators named him “Honorary Citizen of the City” while a former governor proclaimed September 9, 1999 as this distinguished man’s day. He is known by all as a kind and giving man who would help anyone. He is the kind of person who has never been too busy to stop and ask how you are doing; an individual who genuinely cares about others.
Although his accolades in the business world are significant, his daughters know him as a family man. They both describe a humorous dad who offered pony rides on his back, danced around the house, and made Saturday morning breakfast before settling in to watch Road Runner cartoons together. As they grew up and moved away, their father remained a source of refuge and support. His was the gathering place where holidays were celebrated, a sense of calmness was found, and steaks were thrown on the grill to welcome them home.
These are only a few reasons it is so important for this impeccably dressed man to make the journey to D.C. as we share the impact Alzheimer’s disease has made on our lives. Of course, Rex will be sending a representative in his place. He will be back at the home he now shares with my father and 15 other residents. His daughter, Brenda, relays that her father hid his disease well in the beginning. Seemingly fine one day, he was hospitalized for a high fever due to a virus.
Jody’s mom had been hospitalized for an infection and was experiencing memory loss. Doctors had even uttered the word dementia as a possible reason for her condition. The publisher, who put Stone Benches in your hands, was looking for answers too. After researching books offering families like us support, she found very little. Imagine, this epidemic affecting you and I, this thief that has stolen our loved ones’ memories, and affected 44 million people in the world - and all we get is very little?
She joined me in support of my mission to raise awareness and funding for this disease and shared my passion for encouraging others who are on this journey. The immensity of her commitment to this cause became apparent when I phoned her after church one day and shared my vision. After I explained this journey I envisioned to take our loved ones to our Nation’s Capitol, Jody simply stated, “We will make that happen.”
Two days later, she came to town and walked through the doors of Memory Care for a photo shoot. “I just got off the phone with the national Alzheimer’s Association,” she said. “You are going to Washington D.C.” I soon discovered she would be making the journey with me. I was speechless. I have been in the trenches dealing with this disease for over a decade. The encouragement and support Jody has offered inspires me to do more than simply survive another day of this disease.
It is time to storm the gates and demand some help for these folks.
It is time we show those who can make a difference who these people are. It is time we tell their stories so those who can will put laws in place, raise funding for research, expose this terrible epidemic, and get all of us some help! We will take them with us, these faceless, voiceless victims, inflicted with this disease. #TheyHaveAName
We will hold their portraits high for all to see. No longer will we hide them in dark corners. Those serving the dementia patients of the world have been battling this disease on the front lines long enough. You and I have been living the heartache and experiencing the pain for too long. We need backup and support. Every 67 seconds someone in the United States develops #Alzheimer’s disease. We need answers we simply do not have and we need them quickly.
Jody’s family has been seeking answers as well. The same day Stone Benches was released, she took her mother to an appointment with a neurologist. He had the results of her CAT scan and was prepared to offer answers. Although infections and medications are often the cause of memory loss, a condition which is reversible, this would not be the case for Jody’s mom. The cause of her memory loss was uncovered this week.
She was diagnosed with Alzheimer’s disease.
Jody is now on this journey with me, not only as an advocate in support of our cause, she is a family member, now walking alongside her mother’s invisible footprints. When she bought her ticket for this journey, it was as a guide offering a hand of support. She will now need support too as she manages the decisions and challenges this disease will present. Little did we know a little over a month ago when this journey was planned, Jody would be traveling as a representative for her mom’s disease as well.
None of us are safe from the devastation of this disease. Alzheimer’s can strike anyone. The residents of my father’s Memory Care range in age from 52 to 101. This disease demands our attention. We simply cannot afford to remain silent any longer. Follow us to Washington D.C. as I introduce you to the others who have joined us on this journey.
#StoneBenches #TheyHaveAName #EndAlz #AlzForum #WashingtonDC #CapitolHill #HOPE
#SymphonyPublishing #AmazingPublishers #AlzFamilies #InPursuitOfACure #AlzheimersCure