Chris B.Van Ryzin and forMemory
forMemory
What is Early Onset Alzheimer’s disease?
EOAD is typically defined as having symptoms of Alzheimer’s disease before the age of 65 (some studies use 60).
How did forMemory come to be?
forMemory was a collaborative effort of several families affected by EOAD. We first met in spring of 2006 at a national Alzheimer’s Association Public Policy gathering Washington DC. Sharing time together, we realized we needed to form a support group that could take action and make a change. forMemory came together in a few months, and we had our first meeting. We planned the event around the Wisconsin State Alzheimer’s Conference, so it would meet our educational and supportive goals.
Does EOAD manifest itself differently?
Some research suggests that it’s a separate disease, but the jury’s still out. The neurological symptoms may be more pronounced, yes. The loss of balance, weakness in legs, and falling might seem unusual in a younger person but less so in an older one. Early onset is also linked to different genes, with more hereditary factors. There are some genetic forms that have a much wider age range.
What’s most important is early diagnosis and more aggressive treatment while there’s still brain reserve. Alzheimer’s takes a very long time to develop, so to stop or reverse it would take several years – it’s not done overnight.
Is EOAD actually stoppable and/or reversible?
With early diagnosis, less damage is done. And at a younger age, there’s more time for the brain to repair. My sister and I have slowed the progression and improved our quality of life, but have not cured the disease. It took several years to achieve a better quality of life once we slowed or hopefully stopped the destruction.
Dr. Sanjay Asthana, head of geriatrics at the UW School of Medicine and Public Health and associate director of the Wisconsin Alzheimer’s Institute, explains that while in biological terms the disease cannot improve, symptoms can be stabilized and improve for a time. Our family’s goal is to make that time very long!
What are some symptoms?
They’re both physical and mental. forMemory is compiling a database of the earliest ones right now. Symptoms are unique depending on where the damage is occurring, but they include: increased fatigue, problems with balance and coordination, muscle weakness, sensitivity to temperature extremes, hearing or sight problems (even though tests are normal), losing train of thought while talking, poor judgment, losing things, mood changes, getting lost and short term memory.
How is EOAD diagnosed?
First by neurophysicological testing – memory, planning, organization, processing speed, IQ; imaging by MRI, PET, or fMRI, and genetics – and then by eliminating a host of other causes such as sleep deprivation, tumors, malnutrition, and other diseases. This may lead to a probable diagnosis until autopsy.
Are you saying the diagnosis isn’t clear cut?
The diagnosis currently depends on seeing the tangles and plaques in the brain, which clinically at this time can only be achieved through autopsy of the brain or a biopsy (no thanks!). Without either, the diagnosis is only probable, or called a diagnosis by elimination (of other causes).
That said, improving techniques are making the diagnosis highly probable. But it’s also not unusual to update the diagnosis to a more specific type of dementia such as Frontotemporal or Pick’s, or to be considered a blend of one of these with a neurological disease such as Parkinson’s, as well as micro strokes, seizures, or certain vascular conditions.
This has made for even more frustration and uncertainty. For instance, a patient might be involved in a study of new imaging techniques or spinal fluid indicators. The researchers will have a clear-cut picture of diagnosis but won’t be able to share it with the patient because of confidentiality. These techniques haven’t yet moved into clinical procedures (where it is obtainable outside research), so we with dementia are very much at a loss.
This is why it’s so important to request an autopsy – currently it’s the only way to help the next generation. We need and want to know so we can make early choices in our lifestyle, plan appropriately for the future, and participate in research ourselves.
EOAD can be studied over multiple generations. Has your group participated in this research?
A number of forMemory families have, yes. A large center for genetic studies is U Wash’s Alzheimer’s Disease Research Center . Dr. Thomas Bird and associates participated in the first genetic breakthrough for multigenerational Alzheimer’s disease, and they continue to seek families with dementia research.
Also, the NIH National Institute on Aging’s Alzheimer’s Disease Education and Referral Center lists national research centers and on going trials. for Memory continues to encourage individual research participation.
How did EOAD begin for you?
I was 41 when I first experienced symptoms like those we’d seen in our mother in her fifties. By then she was 70. My symptoms included memory problems, tremors, weakness especially in arms and legs, personality changes – quickened temper, and a stiff face with a forced smile. That was 18 years ago, before early onset was acknowledged.
I was in limbo for more than 10 years. Not until our mother's death and autopsy in 1995 – as well as my older sister’s symptoms, which appeared in 1999 – did we have a clearer diagnosis. Those years were so terrible because I felt every loss and knew my only hope was early detection. And I wasn’t getting it!
By 1998, I could no longer remember what I should know. I couldn’t cook, I didn’t know what clothes I owned so every day was a struggle to dress. I was weak, and I couldn’t get the words out. Over the years, and working with our wonderful doctor, my family and I began a combined Eastern and Western approach to manage the disease.
By 2003 I considered myself a survivor - not cured, but no longer in decline. I took all my accumulated research and started to organize it for my family. I ended up self-publishing a book in 2004, Alzheimer’s Averted: A Path to Survival. I never expected what happened next – that each year I would continue to get a little better. The puzzle pieces continue to come together even now.
What’s is it like now?
I’m relearning how to live. I recognize my limitations and how to work with them. I function more slowly and do my best thinking in a quiet place. I recognize my need to take breaks and de-stress, usually through right-brain activities like writing and designing. My husband reports that my flirty smile is coming more easily, and that our world, which had grown quiet, is now frequently filled with chatty conversation. It’s taken four years to regain my quality of life, with plenty of backward steps.
Tell us about the combined Eastern Western approach to treatment.
My sister and I use whole mind, body and spirit intervention. By reading Brain Repair by Donald G. Stein, we learned that our brains are repairable. So we set out to achieve this.
My daughter-in-law first introduced me to an integrative Eastern/Western approach. Over the years, working with Dr. Benjamin Brooks, neurologist and researcher, and others on my team, we included herbs, topical anti-inflammatory lotions and nutritional supplements to enhance the medications. I reduce stress by finding my place of bliss, doing light meditation, and humming. We eliminated toxic food additives including monosodium glutamate and aspartame, choose organic foods, and watch for environmental toxins.
I had also accepted my losses, an emotional step that clears any negative attitude towards the disease and how it changes life. Before I could move forward I needed to know what could or couldn’t do. Then our grandson was born, and by watching how he struggled to learn, trying over and over, I decided to follow his example: One hour of learning stimulation, one hour of nutrition, and one hour of rest/sleep. I continued to work each day to relearn what I lost and push my mind to think. Support from my family and friends has extended to my forMemory family – all the wonderful people I have met!
How has EOAD changed your relationships?
My husband likes to break it into being married to three wives. First, the pre-Alzheimer’s years; second, the out-of-control Alzheimer’s years; and third, the living with and challenged by Alzheimer’s years. The “out of control” years were very hard - when I was giving up being a caregiver and learning to accept care. The toughest part was losing identity and dignity as well as my future.
What is the most important role of forMemory?
Empowerment by education. Take away the fear, which is as destructive as the disease, and there’s a higher quality of life. Give back the identity, dignity and future.
How is forMemory unique?
forMemory is focused on the unique challenges of EOAD. By forming a not-for-profit educational organization, we can apply for grants and accept donations we use to fund projects and achieve our goals. As an organization representing a community, the doors are opening easier.
This spring we received a capacity developing grant from the Wheat Ridge Ministries, a Chicago-based Lutheran-related charitable organization dedicated to seeding innovative projects that help bring health and hope to people worldwide.
Any recent advances in EOAD research?
Most research has been directed to late onset, with clinical trials excluding anyone under the age of 60. There is, however, a new, yet small, trend towards early detection and prevention, which opens the door back up to us. As more brain imaging is completed, such as the work by Dr. William Klunk at the University of Pittsburgh, the question becomes, at what age did changes start? So here too, the researchers are including younger participants.
It’s now known that Alzheimer’s disease starts several decades before symptoms appear. Some researchers want to find those earliest changes in order to intervene before damage is done. Here we have some wonderful researchers and clinicians working with adult children (age 40 to 65) of Alzheimer’s parents in the WRAP (WI Registry for Alzheimer’s Prevention) program at the Wisconsin Alzheimer’s Institute, founded by Dr. Mark A Sager. By comparing with controls of non-Alzheimer’s parents, they’re able to see some early changes through functional MRI’s. They’re seeking more participants and forMemory hopes to add information from our database questionnaire.
The PBS Nova presentation Ghost In Your Genes, also greatly expands our hope. It explores the role of epigenetic chemical codes that control how our genes are expressed. The epigenomes are affected by nurturing, nutrition, lifestyle, and environment – and are inherited. What we do today has an impact on not only ourselves but generations to come – we can choose to change the future.
How is forMemory working to “find ways of curing and preventing neurological symptoms,” as you state on the site?
We’re collecting data – asking people with EOAD to fill in a questionnaire on their earliest symptoms, what makes them feel better – and worse. We’re posting the summary data on our site, hoping it’ll help with our individual health, and lead to new strategies and information for clinicians and researchers.
With the support of Drs. Craig Atwood and Benjamin Brooks, we’re also co-presenting at the International Alzheimer’s Conference at the end of July in Chicago. forMemory’s Mona Johnson who developed the questionnaire, Mary Kay Baum and myself will present a scientific poster explaining our database.
What are your research goals?
Our goal is to raise $50,000 annually, so we can accomplish genetic testing and release the results to the participants. We also know that food additives like monosodium glutamate and sugar substitutes have a direct negative effect on brain functions for many of us. The Alzheimer's drug Namenda helps prevent excess glutamate from being an excitotoxin - the same glutamate that’s added to our foods. We’ll be seeking better labeling and promoting awareness for our quality of health and prevention for all generations.
What does forMemory offer EOAD families?
A choice. Before, diagnosis led to death. Now choices can be made to learn, share, seek a dream, make changes, work towards a higher quality of life, and learn what can be done to change the odds for future generations. There is hope.
Who do you admire most in the EOAD community?
The EOAD community is like a moving ocean: Each wave brings people’s energies to the forefront, visible with energy, and then gathered back in to renew, while another wave is visible. Our waves may be unique in who we are, and who is in the spotlight today, but we’re each part of the moving ocean and important to the whole rhythm.
What have you and others learned through experiencing Alzheimer’s disease?
I would like to share with you the thoughts that came forth from people who are challenged by dementia, have been able to overcome the fear by education, and are relearning to live:
MIND: creativity, talents, relearning, laughter, evolve, to love and receive love, mental exercise, sunlight, mental and emotional stress reduction
BODY: changing, genetics, epigenomes, nutrition, physical exercise, reduce physical and emotional stress, environmental impact
SPIRIT: self worth, identity, meditation, inner meaning, inner self, future dreams, sharing, caring, giving, loving, advocacy, leadership, believing in change, positive attitude.
It is not unusual to hear, “I’ve learned more about the meaning of life and living in this past year than in my whole lifetime.”
It’s the stigma of dementia that’s been the greatest injustice. It’s our goal to educate and remove the stigma. There is hope and life through knowledge.
Learn more about Chris.
 |
Spotlight: Christine Baum VanRyzin Nonprofit: forMemory, devoted to education and funding research for Early Onset Alzheimer's disease. Established in: Fall 2006 Author of: Alzheimer's Averted: A Path to Survival Website: Alzheimer's Averted. Here's where I update people on my progress. Feel free to contact me with questions or comments. |
What is Early Onset Alzheimer’s disease?
EOAD is typically defined as having symptoms of Alzheimer’s disease before the age of 65 (some studies use 60).
How did forMemory come to be?
forMemory was a collaborative effort of several families affected by EOAD. We first met in spring of 2006 at a national Alzheimer’s Association Public Policy gathering Washington DC. Sharing time together, we realized we needed to form a support group that could take action and make a change. forMemory came together in a few months, and we had our first meeting. We planned the event around the Wisconsin State Alzheimer’s Conference, so it would meet our educational and supportive goals.
Does EOAD manifest itself differently?
Some research suggests that it’s a separate disease, but the jury’s still out. The neurological symptoms may be more pronounced, yes. The loss of balance, weakness in legs, and falling might seem unusual in a younger person but less so in an older one. Early onset is also linked to different genes, with more hereditary factors. There are some genetic forms that have a much wider age range.
What’s most important is early diagnosis and more aggressive treatment while there’s still brain reserve. Alzheimer’s takes a very long time to develop, so to stop or reverse it would take several years – it’s not done overnight.
Is EOAD actually stoppable and/or reversible?
With early diagnosis, less damage is done. And at a younger age, there’s more time for the brain to repair. My sister and I have slowed the progression and improved our quality of life, but have not cured the disease. It took several years to achieve a better quality of life once we slowed or hopefully stopped the destruction.
Dr. Sanjay Asthana, head of geriatrics at the UW School of Medicine and Public Health and associate director of the Wisconsin Alzheimer’s Institute, explains that while in biological terms the disease cannot improve, symptoms can be stabilized and improve for a time. Our family’s goal is to make that time very long!
What are some symptoms?
They’re both physical and mental. forMemory is compiling a database of the earliest ones right now. Symptoms are unique depending on where the damage is occurring, but they include: increased fatigue, problems with balance and coordination, muscle weakness, sensitivity to temperature extremes, hearing or sight problems (even though tests are normal), losing train of thought while talking, poor judgment, losing things, mood changes, getting lost and short term memory.
How is EOAD diagnosed?
First by neurophysicological testing – memory, planning, organization, processing speed, IQ; imaging by MRI, PET, or fMRI, and genetics – and then by eliminating a host of other causes such as sleep deprivation, tumors, malnutrition, and other diseases. This may lead to a probable diagnosis until autopsy.
Are you saying the diagnosis isn’t clear cut?
The diagnosis currently depends on seeing the tangles and plaques in the brain, which clinically at this time can only be achieved through autopsy of the brain or a biopsy (no thanks!). Without either, the diagnosis is only probable, or called a diagnosis by elimination (of other causes).
That said, improving techniques are making the diagnosis highly probable. But it’s also not unusual to update the diagnosis to a more specific type of dementia such as Frontotemporal or Pick’s, or to be considered a blend of one of these with a neurological disease such as Parkinson’s, as well as micro strokes, seizures, or certain vascular conditions.
This has made for even more frustration and uncertainty. For instance, a patient might be involved in a study of new imaging techniques or spinal fluid indicators. The researchers will have a clear-cut picture of diagnosis but won’t be able to share it with the patient because of confidentiality. These techniques haven’t yet moved into clinical procedures (where it is obtainable outside research), so we with dementia are very much at a loss.
This is why it’s so important to request an autopsy – currently it’s the only way to help the next generation. We need and want to know so we can make early choices in our lifestyle, plan appropriately for the future, and participate in research ourselves.
EOAD can be studied over multiple generations. Has your group participated in this research?
A number of forMemory families have, yes. A large center for genetic studies is U Wash’s Alzheimer’s Disease Research Center . Dr. Thomas Bird and associates participated in the first genetic breakthrough for multigenerational Alzheimer’s disease, and they continue to seek families with dementia research.
Also, the NIH National Institute on Aging’s Alzheimer’s Disease Education and Referral Center lists national research centers and on going trials. for Memory continues to encourage individual research participation.
How did EOAD begin for you?
I was 41 when I first experienced symptoms like those we’d seen in our mother in her fifties. By then she was 70. My symptoms included memory problems, tremors, weakness especially in arms and legs, personality changes – quickened temper, and a stiff face with a forced smile. That was 18 years ago, before early onset was acknowledged.
I was in limbo for more than 10 years. Not until our mother's death and autopsy in 1995 – as well as my older sister’s symptoms, which appeared in 1999 – did we have a clearer diagnosis. Those years were so terrible because I felt every loss and knew my only hope was early detection. And I wasn’t getting it!
By 1998, I could no longer remember what I should know. I couldn’t cook, I didn’t know what clothes I owned so every day was a struggle to dress. I was weak, and I couldn’t get the words out. Over the years, and working with our wonderful doctor, my family and I began a combined Eastern and Western approach to manage the disease.
By 2003 I considered myself a survivor - not cured, but no longer in decline. I took all my accumulated research and started to organize it for my family. I ended up self-publishing a book in 2004, Alzheimer’s Averted: A Path to Survival. I never expected what happened next – that each year I would continue to get a little better. The puzzle pieces continue to come together even now.
What’s is it like now?
I’m relearning how to live. I recognize my limitations and how to work with them. I function more slowly and do my best thinking in a quiet place. I recognize my need to take breaks and de-stress, usually through right-brain activities like writing and designing. My husband reports that my flirty smile is coming more easily, and that our world, which had grown quiet, is now frequently filled with chatty conversation. It’s taken four years to regain my quality of life, with plenty of backward steps.
Tell us about the combined Eastern Western approach to treatment.
My sister and I use whole mind, body and spirit intervention. By reading Brain Repair by Donald G. Stein, we learned that our brains are repairable. So we set out to achieve this.
My daughter-in-law first introduced me to an integrative Eastern/Western approach. Over the years, working with Dr. Benjamin Brooks, neurologist and researcher, and others on my team, we included herbs, topical anti-inflammatory lotions and nutritional supplements to enhance the medications. I reduce stress by finding my place of bliss, doing light meditation, and humming. We eliminated toxic food additives including monosodium glutamate and aspartame, choose organic foods, and watch for environmental toxins.
I had also accepted my losses, an emotional step that clears any negative attitude towards the disease and how it changes life. Before I could move forward I needed to know what could or couldn’t do. Then our grandson was born, and by watching how he struggled to learn, trying over and over, I decided to follow his example: One hour of learning stimulation, one hour of nutrition, and one hour of rest/sleep. I continued to work each day to relearn what I lost and push my mind to think. Support from my family and friends has extended to my forMemory family – all the wonderful people I have met!
How has EOAD changed your relationships?
My husband likes to break it into being married to three wives. First, the pre-Alzheimer’s years; second, the out-of-control Alzheimer’s years; and third, the living with and challenged by Alzheimer’s years. The “out of control” years were very hard - when I was giving up being a caregiver and learning to accept care. The toughest part was losing identity and dignity as well as my future.
What is the most important role of forMemory?
Empowerment by education. Take away the fear, which is as destructive as the disease, and there’s a higher quality of life. Give back the identity, dignity and future.
How is forMemory unique?
forMemory is focused on the unique challenges of EOAD. By forming a not-for-profit educational organization, we can apply for grants and accept donations we use to fund projects and achieve our goals. As an organization representing a community, the doors are opening easier.
This spring we received a capacity developing grant from the Wheat Ridge Ministries, a Chicago-based Lutheran-related charitable organization dedicated to seeding innovative projects that help bring health and hope to people worldwide.
Any recent advances in EOAD research?
Most research has been directed to late onset, with clinical trials excluding anyone under the age of 60. There is, however, a new, yet small, trend towards early detection and prevention, which opens the door back up to us. As more brain imaging is completed, such as the work by Dr. William Klunk at the University of Pittsburgh, the question becomes, at what age did changes start? So here too, the researchers are including younger participants.
It’s now known that Alzheimer’s disease starts several decades before symptoms appear. Some researchers want to find those earliest changes in order to intervene before damage is done. Here we have some wonderful researchers and clinicians working with adult children (age 40 to 65) of Alzheimer’s parents in the WRAP (WI Registry for Alzheimer’s Prevention) program at the Wisconsin Alzheimer’s Institute, founded by Dr. Mark A Sager. By comparing with controls of non-Alzheimer’s parents, they’re able to see some early changes through functional MRI’s. They’re seeking more participants and forMemory hopes to add information from our database questionnaire.
The PBS Nova presentation Ghost In Your Genes, also greatly expands our hope. It explores the role of epigenetic chemical codes that control how our genes are expressed. The epigenomes are affected by nurturing, nutrition, lifestyle, and environment – and are inherited. What we do today has an impact on not only ourselves but generations to come – we can choose to change the future.
How is forMemory working to “find ways of curing and preventing neurological symptoms,” as you state on the site?
We’re collecting data – asking people with EOAD to fill in a questionnaire on their earliest symptoms, what makes them feel better – and worse. We’re posting the summary data on our site, hoping it’ll help with our individual health, and lead to new strategies and information for clinicians and researchers.
With the support of Drs. Craig Atwood and Benjamin Brooks, we’re also co-presenting at the International Alzheimer’s Conference at the end of July in Chicago. forMemory’s Mona Johnson who developed the questionnaire, Mary Kay Baum and myself will present a scientific poster explaining our database.
What are your research goals?
Our goal is to raise $50,000 annually, so we can accomplish genetic testing and release the results to the participants. We also know that food additives like monosodium glutamate and sugar substitutes have a direct negative effect on brain functions for many of us. The Alzheimer's drug Namenda helps prevent excess glutamate from being an excitotoxin - the same glutamate that’s added to our foods. We’ll be seeking better labeling and promoting awareness for our quality of health and prevention for all generations.
What does forMemory offer EOAD families?
A choice. Before, diagnosis led to death. Now choices can be made to learn, share, seek a dream, make changes, work towards a higher quality of life, and learn what can be done to change the odds for future generations. There is hope.
Who do you admire most in the EOAD community?
The EOAD community is like a moving ocean: Each wave brings people’s energies to the forefront, visible with energy, and then gathered back in to renew, while another wave is visible. Our waves may be unique in who we are, and who is in the spotlight today, but we’re each part of the moving ocean and important to the whole rhythm.
What have you and others learned through experiencing Alzheimer’s disease?
I would like to share with you the thoughts that came forth from people who are challenged by dementia, have been able to overcome the fear by education, and are relearning to live:
MIND: creativity, talents, relearning, laughter, evolve, to love and receive love, mental exercise, sunlight, mental and emotional stress reduction
BODY: changing, genetics, epigenomes, nutrition, physical exercise, reduce physical and emotional stress, environmental impact
SPIRIT: self worth, identity, meditation, inner meaning, inner self, future dreams, sharing, caring, giving, loving, advocacy, leadership, believing in change, positive attitude.
It is not unusual to hear, “I’ve learned more about the meaning of life and living in this past year than in my whole lifetime.”
It’s the stigma of dementia that’s been the greatest injustice. It’s our goal to educate and remove the stigma. There is hope and life through knowledge.
Learn more about Chris.
| Who inspires you? Let us know who we should feature in our next Spotlight Interview. Write us at community@wegohealth.com |
Add a Comment
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Comment by sheranc on December 21, 2008 at 10:56am -
Hello and thank you for sharing my passion of helping those about Alzheimer's. My expereinces have been directing closed units for seniors with this terrible illness and as a support group facilator for the Alzheimer's Association helping familes understand it stages and living thru the stress. I am very pro caregiver weather it be family or hired.
My expereinces now as the Director for a caregiver agency shows another option for care.....
Im always open for comments, questions or concerns.
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Comment by younghope on August 13, 2008 at 5:21am -
Chris, thanks for opening up to the community and serving as a speaker to Camp Building Bridges. My name is Tracy Mobley and I am the founder of Camp Building Brdiges, please feel free to visit the current website which will be changing within the next month or so.
http://www.freewebs.com/younghope2007/
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Comment by Jack Barrette on August 12, 2008 at 9:45am -
Chris, this is amazing - no medical text, no 3rd-party perspective can match your real-life experience. I'm most struck by your work to push back against the disease, understanding your challenge but constructing a plan to regain and retain the best possible quality of life.
I hope you'll help others on WEGO Health to understand your eastern/western approach, your medical team's role, and more. Would you consider leading a webinar for other Health Activists?
© 2009 Created by Marie
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