History

 

A Book that Shares Our Experiences with Cognitive Challenges.

Pathways of Hope: Living Well with Cognitive Changes shares the first hand stories of a dozen persons who noticed cognitive changes well before the age of 65 years. The insights and resources included in this 72 page book is a must read for anyone working with people, since one in three families have a loved one with Alzheimer’s. A scientist wrote that this “short book with its inviting photographs, inspiring stories and beautiful layout embodies the efforts of a group of individuals involved in an important revolutionary movement.” It shares important information and resources about early symptoms, exercise and physical capacity, nutrition, avoiding toxins, integrative medicine, and advocacy. For this easy to read, easy to give resource, download the Order Form. Contact our Treasurer listed at the bottom if you need help or want a volume discount.

 

 

DVDs:

Two DVDs are available from forMemory. PATHWAYS OF HOPE DVD discusses living well with cognitive changes. WISCONSIN HOPE DVD is a meditative video featuring nature photographs by Mary Kay Baum set to the music of Peter Phippen.

Wisconsin Hope DVD Sample

Pathways of Hope DVD clips

Order Form

 

 

 

 

 

Meeting each other

Many of our early members met each other at a Public Policy Forum in Washington D.C. in spring, 2006. For most of us, it was the first time we even met another person with early onset cognitive challenges outside of our family. We were surprised by our similar symptoms, approaches, and frustrations.

 

A new thing happened as we continued to stay in touch. We realized how important it was to have peers who understood us. Our founder, Chris Baum Van Ryzin, gathered us together as forMemory. We held our first national meeting in conjunction with the 2007 Wisconsin State Alzheimer's Conference. We added our own sessions to the workshops offered there. Friends from Florida, Missouri, Nebraska, and Washington joined us. The energy was high as we set plans and goals. We chose to replace aloneness with hope, fear with knowledge, disease with life, and silence with a united voice. We became incorporated in Wisconsin as forMemory, Inc. in April 2008.

 

What Is the Early Common Thread?

By conversation with each other, we realized that those of us with cognitive challenges also had physical problems. Once there were cognitive issues, no one seemed to inquire about physical issues. The more we talked, the more we realized that many of us had similar physical symptoms. Then looking back together, we realized that the physical changes preceded noticeable cognitive decline. We felt we might be on to something.

 

Shouldn’t we document this anecdotal discovery and see how real it was? Even in our families with early-onset histories, no doctors had told us to watch for subtle physical changes. Our physicians had not given us examples of changes that might have the potential of being neurological clues.

 

Of the dozen or so early-onset Alzheimer’s persons that met in 2006 in D.C., almost all had spent significant parts of their lives on farms where DDT had been present. Another was living near a federal hazardous waste site where Agent Orange had been produced. Because of our anecdotal concerns, the Wisconsin Registry for Alzheimer’s Prevention (WRAP) now asks for information on years lived on a farm.

 

Early changes for most of us included two or three of the following: fatigue, tremor, weakness, vertigo, leg pain, falling, irritability, loss of coordination and/or disturbed sleep. Many of us had changes in our spatial awareness, gait and/or eyesight. A few of us had for the first times in our lives experienced heart palpitations, bright light auras or other possible signs of mild seizure activity.

 

Most of us have a relative or two with dementia. Our relatives may have had physical problems in their early stages. But nobody seemed to connect those to their cognitive changes. Even today some physicians would not consider unexplained falling as a possible indication of cognitive challenges.

 

Early Documentation

An early goal was to document our shared symptoms, environmental backgrounds and treatment regimens. We hoped we could find common pathways to healthier living. From our simple quest for shared information we developed a pilot data base questionnaire.

 

With the encouragement of our own neurologists, we shared this anecdotal data base approach in a poster presentation at the 2008 International Conference on Alzheimer’s Disease in Chicago. We were enthusiastically received. Scientists working in laboratories were so happy to meet affected people in person and to discuss cognitive and physical changes directly with us. We were honored to be able to thank them for their labors. We were especially pleased to meet multi-disciplinary scientists who were thinking outside the box.

 

Youth Camps

Later in 2008, our founder worked with a mother with early onset who wanted to hold a one week camp for youth who have a relative with dementia. forMemory helped with the grant process, provided a corporate umbrella, and helped develop a day of memory programming. Chris Van Ryzin actually helped lead the camp in Oklahoma in 2008.

 

Back in Wisconsin, forMemory partnered with local Alzheimer’s groups and Lutherdale Adventure Camp near Elkhorn to host a 2009 “Time for Us” camp. Cognitive health activities were conducted in daily sessions. Youth who had originally been reluctant to come, participated enthusiastically and even developed their own memory activities. Eleven boys and three girls, with Hispanic, Native American and European American backgrounds, became Keepers of Memories. They discussed brain health, nutrition, stress reduction, and coping strategies. They left knowing they were not alone and were better equipped to face future challenges.

 

Community Outreach

From the beginning our primary role was community outreach. forMemory officers gave a moving keynote to 500 professionals at a March 2009 Wisconsin Assisted Living Association conference.

 

After that assisted living groups requested discussions around the state. Harbor House initiated the “Sisters Traveling with Hope Tour” in May, 2009. We visited dozens of sites with congregations, hospitals, other assisted living communities and Alzheimer’s Chapters co-sponsoring. Audiences of 100 people were frequent. Of 339 recorded written evaluations afterwards, 305 attendees expressed feeling much more hopeful and willing to seek early interventions.

 

Chris Van Ryzin’s poem about overload, fear and distraction during a simple shower has become a regular training tool for care providers. Between 2010 and 2011 our first-hand accounts were highlights in over a dozen daylong educational conferences around the state of WI. Along with experts in the field, attendees received Continuing Education credit for our part in these Diagnosis, Drugs, and Depression: Little Discussed Dementia Issues events.

Some other conferences in which we participated include:

 

2007-08 Murray Alzheimer Research & Education Changing Melody, Toronto

2009 Leonard Berg Symposium, at Washington University, St. Louis, MO

2004-current Wisconsin Annual State Alzheimer’s conferences

2009-current Wisconsin Assisted Living Association annual conference

2010-current Wisconsin Coalition of Aging Groups annual forums

 

Organizational Progress

forMemory uses contracts or billing for legal, website, and fund development services. Soon we realized we needed to build our own capacity to spread new understandings and to provide insights to scientists.

 

With the assistance and training from Wheat Ridge Ministries we were able to apply for IRS recognition of our tax-exempt status which was granted on April 12, 2010. We purchased Directors and Officers liability insurance, wrote our first book, delivered countless public presentations.

 

We presented, provided a booth, and met during the 2010 Wisconsin State Alzheimer’s and Related Disorders Conference. Our Assistant Chair, Jim Cook, delivered the closing keynote at the conference.

Shown during a 2010 environmental field trip are forMemory leaders: (back row) Rosann Milius, Charley and Barbara Schneider and their grandson Christopher, and Jim Cook; (front row) John and Karen Waterhouse, Chris Van Ryzin, Gwen Cook, and Mary Kay Baum.

 

 

 

 

 

 

 

 

For years, founder Chris Van Ryzin has been staffing a monthly informal gathering of persons with early cognitive changes in Seymour, WI. This resembles a Memory Café and has become a model for others.

 

Our Left Foot, Right Foot, Breathe event of June 28, 2012 was an afternoon and evening version of such a gathering to “help people understand that a diagnosis of early-onset cognitive changes is not the end. It’s a pivot point for people who can and should continue to live active and engaged lives.” See our home page and check out this article

 

We plan more such gatherings, including the memory cafés of the Alzheimer‘s & Dementia Alliance of WI. A memory café is a casual social meeting for persons with early cognitive changes and their care partners. Persons with cognitive changes plan and gather to share arts, fun, laughter, and fellowship with peers.

A news report of 2013 memory café in Middleton WI.

forMemory is a non-profit 501(c)(3) organization with IRS tax exempt certification For more information on how to receive a tax-deductible receipt for your gift contact forMemory's treasurer, Rosann Milius at drmilius@sbcglobal.net or call (920)231-9237. Disclaimer

forMemory.org website was designed and updated by Jake Swamp