https://www.yahoo.com/lifestyle/reality-lyme-disease-talk-190046483.html
A Reality of Lyme Disease We Need to Talk About
August 2, 2019
Kathryne Fassbender of the Dementia Letters Project
Brittany Klaus Jul 26, 2019
Kathryn Fassbender
A passion for serving the elderly has led Kathryne Fassbender to start a dialogue about dementia to help both those living with the condition and their care partners.
At DementiaLettersProject.com, the Wisconsin resident and certified dementia communication specialist is creating the dialogue with input from care partners, family members, medical staff, and, most importantly, the individuals living with dementia.
The letters, she says, “can be (written) to dementia, to their future self who they fear might have dementia, or to a loved one with dementia. It can be expressing those fears, sharing their story of dementia, or sharing the gifts of dementia.”
Dementia is, according to CaringKind.com, the loss of cognitive functioning—thinking, remembering, and reasoning—and behavioral abilities to an extent that it interferes with a person’s daily life and activities.
“Dementia is an umbrella term that includes several different types of dementia with their own unique characteristics,” she says. “While dementia can take much away from one’s life, it does not take away their own experiences, joy, or spirit.”
Kathryne’s service to those affected by dementia started on a volunteer basis through middle-school service projects. She focused on aging.
“I was drawn into helping those with dementia first by finding that I connected well with individuals with dementia,” she says. By seeing the great misunderstanding her classmates had about the disease, she felt an even greater pull to work with those living with dementia.
Then in 2005 her grandmother was diagnosed with vascular dementia.
“Around that time not only was I experiencing dementia personally, but I was seeing how professionally it might evolve and become a professional vocation,” Kathryne says.
There is great healing through storytelling, and letter writing is a beautiful and easy form of storytelling. Kathryne Fassbender
She earned her undergraduate degree in art therapy at Edgewood College in Wisconsin and interned at an adult day program that focused on dementia. From there she has gone on to work as a life-enrichment specialist and now leads dementia training workshops, works as a family consultant, speaks at conferences, and, in 2017, formed the Dementia Letters Project. Besides earning her CDCS last year, she also has earned a certificate in arts and health therapy.
Kathryne attributes the start of the Dementia Letters Project to “a couple of things colliding.”
She says she was beginning to discover people with dementia like Brian LeBlanc and Kate Swaffer who write blogs and are “calling out for people to recognize them and recognize their story and that their story is not what all medical professionals are telling us.”
“It’s not all doom and gloom, it’s not all memory loss and becoming medicalized,” Kathryne says.
She also noted family members and staff at a care community saying that they had fears about dementia but were afraid to share them and needed a platform where they could do that.
The Dementia Letters Project encourages others to share their story of dementia by writing letters for submission to DementiaLettersProject.com or for sharing within their family.
“These letters can be written to dementia itself, to the individual’s future self, or to a loved one with dementia,” she says. “It can express fears and joys about their personal story of dementia.”
Kathryne emphasizes that these letters are not all about fears, such as worry about when a loved one might the name of their children. It is also about those moments spent together that might not have happened without dementia. The goal of the Dementia Letters Project is to build a community that is “wealthy in hope and connection” for someone with dementia as well as friends, family, and care partners. The website also includes links to resources and Kathryne’s blog.
“My hope with the Dementia Letters Project is to allow those who may not want to be a visible voice via platforms like a blog, book, or speaking engagements to still be able to share their voice,” she says. “I also want families and community members to help us deepen the reality of dementia, to share their fears, their joys, their experiences. There is great healing through storytelling, and letter writing is a beautiful and easy form of storytelling.”
Kathryne says that dementia is more than what we’re reading in news articles or seeing on TV specials. It’s not only despondency; there is also joy, hope, and light—and conveying that to families and care communities has been Kathryne’s mission over the past two years.
“We need to be visionaries and servants of the Lord to individuals with dementia, despite our own fears and misunderstandings,” Kathryne says. “We have a duty to grow in knowledge about dementia and aging so that we can better minister to others.”
At the same time, Kathryne says we must not “medicalize” someone with dementia; we cannot forget to include their faith with the sudden checklist that appears with the diagnosis—making sure they eat, sleep, are dressed, and take prescribed medication. She encourages family members, friends, and care partners to ask themselves how they can make sure that their loved ones are still practicing their faith. Encouraging someone with dementia in their faith can be as simple as singing hymns with them or saying the Lord’s Prayer together—things that are ingrained in them, firmly rooted in their emotional memory.
To someone who is struggling with dementia, Kathryne says, “Your value never decreases in God’s eyes, and your ability to grow in faith never ceases.”
Kathryne spreads awareness and builds bridges by speaking at conferences. She realized there was a need for people who aren’t medical professionals but who are working with someone living with dementia to “enter the public speaking round.” She describes the medical community as being very “siloed,” especially when it comes to aging and dementia. Doctors and nurses will be in one silo and think they’re right, while academic researchers will be in their separate silo, and then those who take a more creative approach to dementia care will be in their silo.
“We need more bridges,” Kathryne says, “because we’re not really going to break the barrier of where we are right now with knowledge of dementia until we start communicating with each other and learn how to put our language into another person’s language, and then be able to share that with families. That’s where I am—trying to figure out that spot, that in-between spot, that can put medical research and creative aging language into layman’s terms.”
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**Comment**
Please remember that both dementia and Alzheimer’s can be caused by Lyme/MSIDS. Deal with the infections and you can often gain cognitive ability back: https://madisonarealymesupportgroup.com/2018/10/03/chronology-of-research-on-lyme-disease-dementia-alzheimers-parkinsons-autism/
https://madisonarealymesupportgroup.com/2019/06/22/dementia-from-illness/
https://madisonarealymesupportgroup.com/2017/06/10/the-coming-pandemic-of-lyme-dementia/
https://madisonarealymesupportgroup.com/2017/01/04/aluminum-alzheimers-ld/ Within this article, Dr. Marc Siegel explains on ‘Fox & Friends’ how Kris Kristofferson was diagnosed with Alzheimer’s but actually had Lyme Disease. (Warning: the news reporter propagates a myth that “One antibiotic,” prophylactically will cure LD if used early.)
Vaccine Informed Consent Press Conference
Published on Apr 30, 2019
Dr. Moss, an expert on medical ethics speaks first.
- Doctors are refusing to treat children who are not vaccinating their children exactly as they say. Moss states this is a return to “Paternalism,” where doctors are forcing their opinions upon parents of children. They are coercing parents into vaccinating their children against their better judgment.
Attorney Mary Holland speaks next and is a faculty member of NYU School of Law. She’s written two books on vaccines. She also has a vaccine injured child.
- Holland states that it is a form of discrimination when parents are ostracized for departing from the orthodoxy of vaccine schedules. History has shown that when the right of informed consent is denied, it leads to very dark places: concentration camps, & experimentation on disabled children, African Americans, & Jews. She also states that, “fear of contagion is not a basis for rational discrimination.”
Dr. James Lyons-Weiler is a biomedical research scientist and has written three books. He runs IPAK (Institute for Pure and Applied Knowledge) is a not-for-profit organization which exists to perform scientific research in the public interest. It is registered with the State of Pennsylvania as a not-for-profit pure public charity.
- Weiler points out that safety studies on vaccines remove those at risk for the very adverse reactions the study is looking for. He reminds us that there’s never been a single randomized prospective double-blind placebo controlled clinical trial to answer the question, “What if we vaccinated some people and not others?” He states it’s the most important question that could be asked. IPAK is conducting a vaccinated vs. unvaccinated study.
FYI: Every single Lyme/MSIDS patient I know that got vaccinated suffered a relapse of symptoms.
Pod-Cast On Laughter: A Healing Force For Lyme Disease
August 1, 2019
https://livingwithlyme.us/episode-79-laughter-a-healing-force-for-lyme-disease/
Episode 79: Laughter: A Healing Force for Lyme Disease
Cindy Kennedy, FNP, is joined by Robert Rivest, an internationally admired performer and teacher, to discuss how laughter is a healing force for Lyme Disease.
Laughter can be a vital form of healing and relaxation. In addition to being a renowned comic mime artist, Robert is also an accomplished health, literacy and stress relief educator, a gifted mindfulness teacher, a certified laughter yoga master trainer and an engaging public speaker.Since 1990 Robert has given over 8,000 presentations in Europe, Asia, Africa and across the U.S. His mission is to use mindfulness, laughter and the performing arts to bring greater health and happiness to individuals and organizations around the world.
For more information, visit robertrivest.com
