A great conference for patients, caregivers, friends & family members

I highly recommend this conference. 

You will find great brain tumor surgeons, researchers, victims, caregivers, and friends and family members. I’ve found everybody who attends to be good listeners and full of honest advice and time to listen to you and your concerns.

Here’s the link: http://hope.abta.org/site/TR?fr_id=3521&pg=entry

The opening sentence of the email from the ABTA about the conference says “The ABTA’s annual Patient and Family Conference is where patients, families and caregivers come together to learn more about the latest advances in brain tumor research, treatment and care.” I want to highlight two important words “latest advances.”

If you haven’t been reading all the brain tumor news that’s been spilling out of research studies of late, here’s a good place to get a sense of all the new tools we have to fight brain tumors. The ABTA marketing folks have highlighted that in their first two bullet points saying:

• “Physicians will present the latest precision medicine treatment options and symptom management techniques for low-grade glioma, high-grade glioma and metastatic brain tumors

• Researchers and doctors will highlight treatment advances in neurosurgery, radiation and immunotherapy”

Importantly the conference includes “A special session for the newly diagnosed will cover how to navigate the early days of a brain tumor diagnosis and what information patients, families and caregivers would need to know in order to be empowered with information and resources to make informed decisions throughout their treatment and care.”

Please know that the conference costs $100. If you are a victim, caregiver or love one, I believe that you will find this to be a particularly good investment.

Caring for the (Brain Tumor) Caregiver

I have great respect for caregivers of all shapes and sizes. My wonderful sister was my caregiver when I came home from my first brain tumor operation. She was patient, attentive and gentle.

She did all that in spite of the fact that I was a mess: I had trouble walking, my short-term memory was reduced to about a nanosecond and nobody in their right mind would let me near a stove. Said differently, she was an angel and I was incredibly lucky.

In a month or so, though, I became nearly self-sufficient – so much so that my wife could leave me at home alone with huge worries.

Not all brain tumor victim caregivers are so lucky.

If you or your caregiver is not so lucky, I think you’ll find the American Brain Tumor Association’s “Caregiver Resource Center” section particularly useful: http://www.abta.org/brain-tumor-treatment/caregivers/
 

It’s got information on:

• The Impact on the Family Unit
• Helping the Children and Teens Cope
• The Role of the Caregiver
• Managing Physical Symptoms
• Managing Cognitive Symptoms
• Caring for the Caregiver
• Getting the Help You Need
• Safety at Home
• Tips for Extended Family and Friends
• Navigating the Health (USA) System
• Caregiver Terms and Worksheets

And, just as importantly, it’s got caregiver videos: http://www.abta.org/brain-tumor-treatment/caregivers/caregiver-videos.html  The videos are honest, raw and informative.  Please don’t underestimate the importance of these videos. Just like brain tumor support groups for patients, I find that connecting caregivers with other caregivers, somebody to talks to who really understands your problems, provides a world of good.

ABTA 2015 National Patient & Family Conference

I just saw that registration for the American Brain Tumor Association (ABTA) has opened registration for their annual “National Patient & Family Conference” - http://hope.abta.org/site/TR?fr_id=3300&pg=entry

 

This is a great conference for victims, caregivers, friends and families. I’ve been, I’ve presented and I’ve listened. If you go, you’ll hear great personal stories of incredibly brave brain tumor survivors and gracious caregivers. You’ll also hear about the most recent treatment news and about protocols in testing.

You’ll meet doctors and scientists and folks who live and breathe the science and treatments on a daily basis.

The conference is July 24-July 25 at the Renaissance Chicago O’Hare Suites Hotel in the U.S.

ABTA Webinar: Nutritional Supplements for Brain Tumors

I constantly see brain tumor victim and caregiver blog conversations about diet and supplements. Chia seeds, berries and the Ketogenic diet are just a few of the raging topics folks are grabbing onto with gasping hope.

So the American Brain Tumor Association’s December 11^th webinar entitled “Nutritional Supplements for brain tumors” - https://www3.gotomeeting.com/register/924039574 - seems both important and timely.

If you haven’t watched a webinar, no worries. If you have access to the internet, you can watch. You can watch with friends, from a hospital room or from you living room wearing pajamas. I’ve watched several webinars (no, I didn’t wear pajamas) and have found them to be helpful.

Part of the reason that I like them is that I like to see and listen to folks (like  Dr. Chaudhary) than I like to read stuff, even important stuff. 

 

Here’s the ABTA’s promotional copy about the seminar:

“Many brain tumor patients have questions about which supplements they can take, should take, or can safely take with other medications and treatment regimes.  What happens if your doctor does not have the answer or is not open to this type of discussion?  There are other brain tumor patients who will choose to take a regiment of supplements on their own without trying to discuss it with their doctor at all. Your doctor and healthcare providers are your team members in your brain tumor journey, you need to partner with them in your care. 

Join Rekha Chaudhary, MD, assistant professor of medicine at the University of Cincinnati Neuroscience Institute as she presents Supplements for Brain Tumors.  Dr. Chaudhary will present the research behind nutritional supplements, which ones to avoid, which ones will help with various side effects related to brain tumors, and if there are any new studies on the horizon involving brain tumors and supplements. This webinar includes an online Q & A session with  Dr. Chaudhary. The webinar will also be recorded and the link will be sent to all registrants after the live session. Please make sure to enter a valid email address when registering to ensure you receive the link to view the webinar. “

Copyright: <a href='http://www.123rf.com/profile_melpomen'>melpomen / 123RF Stock Photo</a>

ABTA CommYOUnity

Here’s a video on the American Brain Tumor Association’s new grassroots volunteer program: https://www.youtube.com/watch?v=dx94Gxv57h4#t=23