A REASON TO HOPE - Gathering of Alzheimer's advocates a look back, ahead


It is hard to believe it has only been five months since I started writing this column, A Reason to Hope. You have been following my personal and professional journey with Alzheimer's disease; the reason continues to grow for hope in finding a cure and for you to share your voice in the fight.

I started by saying I didn't know where to start, so I would start in the middle. My reasoning was that it was in "in the middle" of my journey with Alzheimer's that my husband was actually diagnosed. My writings this month feel like the beginning and/or the end, depending on your individual perspective. The beginning because the need has never been greater in our voice to be heard and the end because of the outcome if our voice is not heard.

I returned earlier this month from the Alzheimer's Summit in Washington, D.C., where over 600 advocates for Alzheimer's disease and related dementias met, gathered from 46 states. The conference was multifaceted with the sharing of individuals who are currently living with Alzheimer's disease (particularly early onset), their caregivers and professionals.

Representing various districts throughout the Alzheimer's Association-Inland Northwest Chapter were Paige Patton-Morris, Debra Lang-Jones, Sara Rial, Julie, Tastad, Pat Johnson, president of the Inland Northwest Chapter's Board, Joel Loiacono, executive director, and myself.

"Our trip to Washington, D.C., was a special mission ... to be the voice for the thousands of Americans who have been diagnosed with Alzheimer's or a related dementia and those yet to be diagnosed" Johnson said.

Sunday afternoon started with the roll call of states, followed by the candlelight tribute rally at the Lincoln Memorial. Impressive was the gathering for the roll call of the states. Wondering what it would feel like attending a national political convention, I heard many say that the energy and passion that filled the air and grew as subsequent states were introduced was just as indescribable and energizing.

Donna Brazile, syndicated columnist and a regular CNN and NPR contributor provided the opening remarks. She shared invaluable insights about grassroots advocacy, learned from her many years of experience with local and national politics.

Her brilliance as a political strategist and educator provided valuable information, as did her personal stories about Alzheimer's disease. As with most families affected in some way with one of the forms of dementia, Donna and many others were able to add humor as they shared the facts, challenges of dealing with a loved one.

It might not seem like humor fits, or is important when dealing with such a devastating disease, but it is. A smile and laugh can help make another day possible.

The candlelight tribute rally was set against the back drop of the Lincoln Memorial and was beyond words. Debbie Jones, co-chair for the Alzheimer's Summit said it best:

"I believe in the power we have as advocates," she said. "We know that there are no survivors, so we must share our experiences to inspire others to take action."

Dr. Steve Hume, an Alzheimer's Association national board member, was diagnosed at 60 years old.

"It's time to stop asking and start demanding that Alzheimer's is recognized for what it is: a major disease," he said.

David Hyde Pierce ("Curtains," "Frasier"), recalled his father's and grandfather's journeys with Alzheimer's, along with all those that have been lost to the disease.

"There are other people who we can't see tonight who are with us," he said.

Pierce encouraged all of us to demand support from the government, reminding us of the hardships America overcame when Lincoln battled to end slavery.

"Look at the man behind me," Pierce said, pointing to the Lincoln Memorial, "and tell me that we can't do this ... We can do this."

Pierce led the rally cry: "Tonight we remember. Tomorrow we fight."

Our collective voices grew louder and louder as the flame traveled throughout the crowd, reminding us of why we were at the summit and what we wanted to accomplish ... tomorrow. Sunday night we remembered and honored, along with 12,363 virtual candles, all of those who are and have been affected by Alzheimer's disease.

"We Shall Overcome" was played as we joined our hearts, tears and resolve to make a difference: A world without Alzheimer's.

Remember you are not alone. And watch Sunday's paper for more on The Alzheimer's Summit: Advocates express gratitude, appreciation to Social Security Administration.

A Reason to Hope appears the last Wednesday of each month. Debbi Pierce, Southeastern Washington Association-Inland Northwest Chapter, can be reached at debbi.pierce@alz.org or 509-713-3390.


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