Blog Oct.11/18: Wednesday's group chats 7:30-8:30 pm EST...
will start to include a video that we can all watch at the same time and then comment on afterwards.
You just have to click a Watch2Gether chat room link that'll take you to a kind of online theatre.
For example, last night there was a 3 minute portion of an interview with Jon Kabat-Zinn (and Oprah) about his "mindful" morning ritual*. Kabat-Zinn is the the founder of Mindfulness-Based Stress Reduction (MBSR). SEE SCREENSHOT
ALSO we watched, and took part in, a 25 minute chair yoga routine (UHN Toronto Rehab)*. SEE SCREENSHOT
"Clinical trials are an important part of the research spectrum. The idea for a clinical trial often starts in the lab..."
“Pazopanib could be considered in patients with von Hippel-Lindau disease and growing lesions who might require surgical resection in the near future, or to reduce tumor size in patients with unresectable lesions…”
"shows promise in rare cancer syndrome..."
"encouraging preliminary activity..."
Blog Post October 10, 2018
“Developing resilience is a personal journey. People do not all react the same to traumatic and stressful life events. An approach to building resilience that works for one person might not work for another. People use varying strategies…”
What the Science Says About the Effectiveness of Meditation. What’s the Bottom Line?
Many studies have been conducted to look at how meditation may be helpful for a variety of conditions, such as high blood pressure, certain psychological disorders, and pain. A number of studies also have helped researchers learn how meditation might work and how it affects the brain…
National Center for Complementary and Integrative Health (NCCIH), U.S. Department of Health & Human Services, National Institutes of Health
Also “There are thousands of studies showing the benefits of Mindfulness-Based Stress Reduction (MBSR) programs.” - research info page (palousemindfulness.com)
Blog Sept 26/18: I didn’t initially realize how some life experiences... would’ve helped me with mind-body stress-management practice - especially as a VHLer. I studied martial arts, as a kid, and trumpet, in private lessons and a bachelor’s degree in music. After graduate studies in ‘99, I became very familiar with mental health treatment as a Social Worker and therapist for many years.
I like this kneeling position because it just naturally makes me breath effortlessly. I sit on a big coffee can with a pillow and put a mat on the floor (it’s better for my knees). Here, I can do mindful meditation or relaxation for around 5-10 minutes. I tend to watch a candle or a calm you tube video.
Weekend Blog Post
"The opposite of stress is resilience. Resilience is the ability to have a plan B, a plan C, a plan D etc., in order to face the situation that stresses you out." MAMMOTH MAGAZINE
"L’inverse du stress, c’est la résilience. La résilience est la capacité d’avoir un plan B, un plan C, un plan D etc., pour faire face à la situation qui nous stresse." MAMMOUTH MAGAZINE
Just two amazing stories that I've seen about family planning and VHL. Other peers also found them interesting.
“My Journey as a Wife and Mom of Von Hippel-Lindau Syndrome (VHL) Warriors … started in 2012 when I met TJ, and shortly after, we started dating… I do not have VHL but I live with two VHL warriors. One has not yet started his battle and the other is 10 years in. I couldn’t imagine my life any other way…” (The Mighty)
“So, when are we going to have kids? To me, this question was painful and used to be hard to answer. The truth is, I always thought I would be a mom. I love kids. I am great with babies, toddlers, even teens… Years of research, talking, heartbreak, and prayers led us here…” (VHLAlliance Blogs)
I recently said to someone that they were “tough” after their VHL surgery that had a lot of unexpected complications and they replied, jokingly, “that’s an understatement!” So I tried again and said that I meant that they were “resilient”.
What I think about this idea is described here, for example*. Resilience is like:
… taking a raft trip down a river... you may encounter rapids, turns, slow water and shallows... Being resilient does not mean that a person doesn't experience difficulty or distress
… Developing resilience is a personal journey. People do not all react the same to traumatic and stressful life events. An approach to building resilience that works for one person might not work for another. People use varying strategies
*The Road to Resilience
Resilience: Build skills to endure hardship
also see PART 2...
Share your feedback and stories by replying to this email or commenting on the blog page
Everyday, I get to witness peers, patients and family members, in our VHL Canada community, and elsewhere, "bounce back" and "take things in stride". Most of the time, it may "just" be online and telephone contact, but it's still serious and inspiring to me.
This APA (American Psychological Association) article* also says:
Research has shown that resilience is ordinary, not extraordinary. People commonly demonstrate resilience. One example is the response of many Americans to the September 11, 2001 terrorist attacks and individuals' efforts to rebuild their lives.
A combination of factors contributes to resilience. Many studies show that the primary factor in resilience is having caring and supportive relationships within and outside the family. Relationships that create love and trust, provide role models and offer encouragement and reassurance help bolster a person's resilience.
Several additional factors are associated with resilience, including:
*The Road to Resilience
also Resilience: Build skills to endure hardship (Mayo Clinic)