Living with Seizures

If you’ve had a brain tumor, seizures are probably a worry. So particularly I’m interested in this upcoming American Brain Tumor Association webinar entitled “Living With Seizures” scheduled for Tuesday, September 30, 2014 1:00 PM - 2:00 PM CDT.

Here’s some verbiage from the ABTA email promoting the event: 

“Join Kathy Lupica, MSN, CNP of Cleveland Clinic Burkhardt Brain Tumor & Neuro-Oncology Center as she presents, Living with Seizures. Ms. Lupica will discuss seizure triggers, first aid, medication choices, side effects and prevention. This webinar includes an online Q & A session with  Ms. Lupica. The webinar will also be recorded and the link will be sent to all registrants after the live session.” https://www3.gotomeeting.com/register/566501806

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Brain Tumors, seizures, dementia and “Alive Inside”

Had a brain tumor? What about seizures? Worried about them, too? Does Dementia scare the snot out of you?

I have this fear of somebody sticking me in a corner and drooling when I’m too brain damaged from all of the above to know who I am or who my family is.

Surprisingly, it seems like one solace for folks with Alzheimer’s disease is music, especially music that the victim likes. In fact, in this excerpt from an upcoming documentary entitled “Alive Inside,” music reaches, inspires and engages patients in a way that nothing else has been able to do.

I dare you to watch this youtube.com video that’s got over nine million hits and not feel a little chill run up your spine.

John

PS – And here’s a link to the ABC post on all this by Katie Moisse: http://abcnews.go.com/Health/AlzheimersCommunity/alzheimers-disease-music-brings-patients-back-life/story?id=16117602 

2014 American Brain Tumor Association Patient and Family Conference

I just read the email announcement of this year’s ABTA “Patient and Family” conference: http://hope.abta.org/site/TR?fr_id=3070&pg=entry   The email said “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.”

While that’s all true, it somehow seems to underplay the importance of the event. Having attended the event I can tell you that I didn’t understand much of it – the displays about new protocols, the layman explanations of the complexities of the diseases or event which presentation I should attend. For example, this year should I go to “Meningiomas: Update in Treatment and Care” or the session on “Low Grade Tumors: Update in Treatment and Care”? Beats me.

Somehow the breakout session on “Brain Tumor Symptom Management” with topics like …

• “Management of Fatigue and Sleep Disorders: What Every Patient Needs to Know”
• “Understanding Seizures,” and
• “Strategies for Coping with Cognitive & Personality Changes”

…all seem really important.

But when I went, the most impactful sessions were the patient presentations. The retelling of their struggles and pain and tenacity resonated at an emotional level that, without giving me false hope, told me that my feelings were valid, and felt by many others.

If you are a victim, a victim’s friend or a caregiver, take a long look at the website an program.

“Watch & Wait” – Advice That Drives Victims Nuts

There’s a great discussion tree on the American Brain Tumor Association’s Inspire blog about the “Wait and Watch” advice that many meningioma brain tumor victims get from their neurosurgeons: http://www.inspire.com/groups/american-brain-tumor-association/discussion/meningioma-10/?ref=as&asat=116467750

 

As best I can tell, the comments/reactions fall into two camps.

1. Total and Immediate panic. This is the most natural and immediate response. “Ohmigod, I have this thing growing inside my head and it’s going to kill me!  Can we operate this afternoon and get it out?” 
2. Major League Denial. “Ok, I see the MRI which shows that there’s a tumor as big as my wife’s fist, but do I really need to have an operation? Can we wait another month or two and see if the seizures halt and the tumor growth stops? I hate hospitals, knives and needles. Aren’t we rushing things a bit?

Inspire isn’t the only brain tumor forum with discussion like this. Here’s a link to a similar discussion on The Cancer Forums: http://www.cancerforums.net/threads/7303-Dilemma-surgery-or-watch-amp-wait

As always, I also checked other brain tumor blogs that I follow. Here’s a heartfelt  March 15^th, 2012 posting from THELIZARMY with the headline of “Screw ‘watch and wait’… keep fightin'” - http://thelizarmy.com/2012/03/screw-watch-and-wait-keep-fighting-cancer-advocacy/

Image credit: <a href='http://www.123rf.com/photo_12079252_young-angry-girl-with-clocks-isolated.html'>rbv / 123RF Stock Photo</a>

It’s Just Benign

If you have meningioma, know somebody who has meningioma or just learned that you have meningioma, you should visit this site.

• The site is dedicated to issues surrounding meningioma
• Beth Rosenthal, the founder, creates a great sense of community
• The website smashes to bits the lie that “benign” tumors don’t hurt you
• Victims unabashedly share their fears and worries and latest news
• The “interest” groups are particularly relevant to brain tumor victims, e.g. Migraines, Parents of Diagnosed Children, Seizures, Cognitive Issues, Depression & Anxiety Group
• They have an active, if regional, series of monthly support groups

 Here’s a link to their website: http://www.itsjustbenign.org/