Help Julia End Her Tremors
Until recently, there was no cure for Essential Tremor. It can be inherited, as in Julia’s case, specifically targeting the hands, but only when they engage in a focused activity such as writing, painting, or eating—then the hand shakes uncontrollably. The voice and head can also be affected. Now, there is now a non-invasive procedure for essential tremor! Approved by the FDA this past summer, Exablate Neuro Surgery (targeted sonar energy) has proven immediately effective at reducing hand tremors up to 70% and is being performed at Stanford Medical Center at a cost of upwards of $40,000. Hence the appeal!
Those who know Julia know she has given widely to the community. She has taught poetry in the California State Prisons, created a three-year project that gave a voice to homeless and marginalized women, taught exceptional young writers at a Summer Institute for the Arts, offered free courses to seniors teaching them how, through poetry, to re-vision and tell their life stories, as well as for twenty + years, offered workshops and master classes, mentoring less experienced poets, both in Sacramento and at numerous workshops throughout the region. She served as Poet Laureate of Sacramento from 2005 – 2009 where she devised programs that took place in libraries, museums, classrooms and coffee shops.
Adaptive computer devices and voice technologies have been useful to Julia for e-mails and assisting others in editing their work, but do not allow her to engage the creative source from which her own work is generated – the journal. Mind to hand has always been Julia’s creative entry. Her forty years of journals are a testament.
Let’s give Julia back her hands.
Thanks from her husband and devoted friend,
Jim Anderson, Theater Artist
As in "hurry up and wait," my treatment date has been pushed into the future. A shock! I know. Jim and I have been reeling from it. We've had an advanced medical mini-course here at Swedish. It turns out the conformation and thickness of the skull are crucial for targeting the brain with ultrasound. Each individual is different and the protocol for the imaging is highly specialized. My skull, it turns out, is on the thick side. (Save the jokes, please.) Because of this, extra precaution is warranted in order to not overheat the surrounding areas of the brain causing potential serious damage. Everyone--the entire surgical team here at Swedish Hospital--is disappointed but advises not going ahead at this time. We were down to the wire and it was all systems go until this turned up. I am, of course, very disappointed but appreciate the respect and caution, even though it puts everything in a state of flux. Deep Brain Stimulation (DBS), which involves incision into the skull, remains an option, although not my preferred one at this time. So, we await further guidance and until then cannot proceed. Many are collaborating to find the best path forward including the Insightec folks (manufacturer) and the Essential Tremor Education Center in Florida. Holding ground while staying open to the unexpected seems to be the order of the day. I think I am up to it. This was an abrupt and shocking turn in the road that for the moment certainly took my breath away but in no way do I feel defeated. Help me, if you can, by trusting, as I do, that it is all for a good end. I cherish your caring.
It seems our appointment has arrived!
Jim, Luna, and I will be leaving Sacramento this Thursday to begin making our way to Seattle. In Seattle we will be in residence at "The Inn at Cherry Hill" (a non-residency hospital Inn on the 5th floor of Swedish Medical Center) from the 17th through the 22nd. My surgical procedure is scheduled for the 21st with Doctor Ryder Gwinn presiding. It is possible, though not yet certain, that portions of the procedure will be video taped. If so, you will see them in a future post-op update. Hope so.
Everyone I run into of late asks how I feel. Do I have confidence? Am I nervous? Am I afraid? Do I think "it" will work? It's funny but my thoughts do not focus on success of the procedure per se. Although I go forward in full hope, my thoughts repeatedly turn to the lessons this experience has already brought forward. How changed I am! How grateful! How humbled! How emboldened! How turned toward true center -- as if your love, concern, recognition, care -- be it, in some cases that of 'strangers' -- has somehow 'tuned' my radar. Although I move forward in the hope and belief that this procedure will restore to me the use of my right hand, I can already say that nothing is, or will ever be, the same.
Alert: On April 15th, KCRA will broadcast a fuller version of my interview with KCRA's Toni Valliere at 6:30 pm on "Common Ground" following the 6 pm news. I won't be able to catch the show but I hope some of you will. There will be a link on the KCRA web page that you can send on to others.
My friend, the miracle known as Claudia, will be in touch with me throughout and will hold forth in my absence, keeping you informed.
We are, as I write, inches from our goal. Time to think outside the box, play the long-shot. Do what you can.
All my love,
OK Folks, Julia is one of our great poet-laureates BUT many of you don't know that she was one of the founding administrators of the California Arts Council (CAC). While that job did not raise her financial status, it was a heroic challenge to push a state political afterthought from a scrabbling nearly penniless agency into existence to become a nationally competitive support council that would serve millions of people in schools, prisons and ghettos as it does now. That early money to the arts brought Boomer Artists out of the backstreets to the foreground of "city pride" By the time I came to the CAC, Julia was "legend." All of us felt that she had helped lay the groundwork for our agency.
Love to you both - standing by. Anything you need, please let us know. So sorry to hear about the setback, but love, love, love.
I love you!!! I'm THRILLED to read this wonderful message from you, Jim, and to see that you've exceeded your fundraising goal. Much love, as always. ♥ jm