1. Advocacy is Essential. As one lawmaker so aptly put it: Nothing happens in Congress without these efforts. Our voices provide momentum and direction. The enormous sacrifice advocates made to be in Washington D.C. this week represents their assurance in the belief: These efforts reap benefit.
2. Our Voices Have Been Heard. Gone are the days of tirelessly explaining this terminal disease, its heartbreaking effect on victims and their families, or the enormous financial cost it presents. Lawmakers are aware of the impact Alzheimer's has on all of us and are taking action.
3. We Have Enormous Support. As a family member, I am absolutely blown away by the community leaders, healthcare providers, researchers, public figures, and politicians who walk with us as champions for this cause. We are not fighting for answers alone.
4. Funding This Disease is Smart. Experts believe an annual budget of $2 billion will be required to cure Alzheimer's. Currently, our Country spends $259 billion a year to care for those with this disease. The discovery of a cure will benefit everyone in America and free funds for other needs.
5. There is Momentum Towards a Cure. The necessary components in finding answers are being accomplished: significant research and the funding to sustain these efforts. A $350K increase was approved in 2016, followed by a $400K increase. The $414K requested this week would put us over the halfway mark.
6. Healthcare Funding Cuts. Need I say more? There is a keen focus on the threatened cuts in healthcare. However, I have to believe as status quo is challenged, the most expensive disease in America is going to gain more attention. Finding a cure for Alzheimer's will save our Nation billions of dollars.
7. Our Leaders are Engaged, Involved, and Affected. Lawmakers are eager to hear our stories and are taking action in support of important bills and funding. Most are also personally affected. One lawmaker stood in the hallway with his arm around an advocate, mourning the loss of his friend, her father, together.
8. There is an Atmosphere of Hope. As one researcher put it, the cure is very likely sitting in a petri dish right now. Anxious anticipation is prevalent as research participants report positive results. Advocates walking the halls of our Capitol bore expressions of hope, not anger or despair.
9. Advocacy Can Happen Anywhere. These efforts don't just happen on the banks of the Potomac River. Letters, phone calls, and participation in town hall meetings are essential in maintaining the momentum achieved this week. All of us can make a difference!
10. The Fight is Not Over. Great strides have been made in recent years. However, I return home today to the reality of the enormous loss I have personally experienced due to this disease. 5.5 million Americans continue a battle they will not win, absent a cure. We must not stop until it is found.
Please write or call your lawmakers and ask them to support
increased funding for Alzheimer's research,
as well as PCHETA, the Palliative Care and Hospice Education and Training Act.
#EndAlz #AlzForum #StoneBenches
Our lives were to be dramatically changed very quickly. As I survey the events of the past twelve years, the loss is tangible. My parents' health, the precious memories, stories no longer told, events no longer enjoyed. Despite my best efforts, I found it impossible to reason their thoughts back into the submission of my reality.
This was presented to a group of students and teachers as I surprised my Jr. High English teacher by honoring him after almost four decades.
It’s been ten years since I first stepped out in faith at a Memory Walk, daring to believe my family and I could possibly make a difference. Alzheimer’s disease has been attacking my loved ones for as long as I can remember. In all probability, since long before I was born.
This most difficult journey began when I was 7 years old. I took my Grandma’s hand and followed her into a nursing home to visit her brother. It was apparent, even to the blue-eyed little girl, Grandma’s brother no longer knew who she was.
"This disease demands our attention.
We need answers we simply do not have and we need them quickly.
It is time we call in reinforcements, ask our legislators for help...
This storm will not calm until we do."
Stone Benches: Understanding the Invisible Footprints of Dementia
Alzheimer's disease is the only leading cause of death without a cure or treatment. It is said that by the year 2050, absent of significant advances in understanding this disease, over one trillion dollars will be required to support those affected. Because of the immediate need for care and supervision after diagnosis, along with the length of the disease, Alzheimer's is classified as the most expensive disease in existence.
I had the distinct pleasure of speaking to a group of third graders today - seventy-five to be exact. Summer break is coming incase you hadn't heard and I dare say students, as well as their teachers, are ready! Before I visited the classroom, I was told many of these kids loved to write and were eager to meet an author.
How wonderful, I thought, to have the opportunity to challenge them to continue writing over the summer. I am a perfect example of doing what you love and not giving up on your dreams. The kids gave me their full attention as I showed them my fourth and fifth grade school picture book where I clearly stated both years:
When I grow up I want to be a: Writer.
I encouraged the students to never give up on their dreams and not be afraid to make mistakes. One of my early writings "Iki the Elephant" was viewed - hardly legible on the yellowed paper of long ago. Clearly, it was a masterpiece to have been saved these many decades. I distinctly recall my teacher being very impressed with the story. Yet misspelled words riddled the page and, honestly, the storyline hardly kept my attention. I hoped the teachers would not whip out their red pens today.
There is no getting around the fact Alzheimer's is a wretched disease. It takes up residence in the brain and seeks to deteriorate and destroy it, affecting literally everything in a person's being. I can think of few things more grievous than that. However, the grey haired man I am looking forward to visiting this afternoon is anything but sorrowful. He is sweet and comical - downright captivating. He lights up my world!
We were not created to simply make it through another day. Only when we rise above our circumstances and embrace the life we have, despite the losses, are we truly living.
Early on in the process of writing Stone Benches, I knew this was going to be significant. It did not have anything to do with me, or even my family - but rather God's incredible love for those with this disease, as well as the footprints that journey beside them. I wept- not for myself, but for those I would never meet. People who will be facing this disease next week and don't even see it coming. This produced a drive and resolve in me- the motivation to leap out of bed in the middle of the night and throw inspiration onto my computer screen.
"We are marching out of the shadows and into the light to expose this disease"
Stone Benches: Understanding the Invisible Footprints of Dementia
This is precisely what was accomplished yesterday as a group of 14 of us met with each of our Congressional representatives and United States Senators. The Alzheimer's Association had specific "asks", which lined up perfectly with what I have been hearing on a daily basis from families and Memory Care staff.
We need funding for research,
as well as support for our families and training for staff.
In an unprecedented response, our two Senators accepted our request to co-sponsor the Hope act, which will provide much needed planning services for families, support for caregivers, and education for our Memory Care staff. They will lead the way in getting this bill passed in the Senate. I am proud that Oklahoma is at the forefront of this crucial step in the right direction.
The House was not in session, so we met with staff members. Due to the interest and encouraging support we received from those with influence in these representative's offices, we expect support to come from the House as well. Our requests are significant, including additional funding for research of $400 million this year. We believe if this money is not allocated now, trillions of dollars will be spent within a decade on Medicare expenses for this disease.allocated now, trillions of dollars will be spent within a decade on Medicare expenses for this disease.
This disease is of epidemic proportions and cannot be ignored.
We are so grateful to the Alzheimer's Association, as well as the dedicated members from Oklahoma who have been down in the trenches preparing this groundwork, developing relationships with our leaders, and battling for all of us who walk alongside the invisible footprints of dementia. It was an honor to sit in the room with polished, passionate professionals who have been advocating in Washington D.C. for years.
We joined these seasoned advocates and provided a strong presence of numbers in the room. Three of us, daughters representing our veteran fathers who battle the effects of of this disease on a daily basis, along with a hospice director, memory care director, and memory care aide let our nation's leaders know Oklahomans are passionate about this cause and ready for answers!
"It is going to take all of us telling our stories.
Standing up and saying, "I've had enough of this heartache!"
Stone Benches, pg 291
Our nation's leaders heard our personal stories; each member also received a copy of Stone Benches. Two of the staffers shared their personal connection - their grandmothers have Alzheimer's disease. Not only were our stories shared, our emotions were felt as well. We witnessed tears in the eyes of these professional men and women who lead our country.
Meanwhile, back at Memory Care, my daughter was feeding her grandfather lunch. Rex looked at my dad and said, "That's your daughter?" Dad responded, "No, that's your daughter." "Oh, my daughter!" Rex replied, "Thank you!"
It took an army to care for our fathers while we were gone. Ural's daughter, Cathy, is blessed with sisters who visited to feed him and take care of his daily needs. My husband fed my dad, wiped his nose, and joined Rex and Dad's dining room antics, as did my daughter and son-in-law who live nearby. We are so grateful for the support of family, friends, and memory care staff who assured us of our dad's loving care in our absence.
Thank you to all who prayed for this journey - your prayers have been heard!
#StoneBenches #TheyHaveAName #EndAlz #AlzForum #WashingtonDC #Capitol Hill
#HOPE #MemoryCare #Rex #MyDad #AlzFamilies