Tuesday in Shasta

Miguel, myself, Sage & India arrived in Shasta today. We watched Oprah's show this afternoon and her guest was actor Michael J. Fox, also a Parkinson's patient. Michael has done a lot of work to bring scientists and researchers in the Parkinson's community together, and continues to facilitate the most promising research avenues towards finding a cure. It was an interesting show and he is an inspiring individual. To learn more about Michael J. Fox's Foundation for Parkinson's Research, click HERE.

Luz has been taking it easy the past few days and resting as much as possible to facilitate her healing. Her hair is growing back and she looks like the cutest little pixie. Her spirit is great and she has good color in her face and a sparkle in her eye. We are glad to be here. - Diana

Sunday 3/29

On Friday March 27 Luz returned to the Neurology Department at Stanford Hospital to have her deep brain stimulation system (DBS) turned on and calibrated to her symptoms. She was in the hospital from 8:30 am - 3:00pm.

To test and calibrate the system it was necessary that Luz be off medications since 8:30pm on Thursday. The combination of being off medications and the time consuming process of testing and retesting to adjust the system was quite arduous for her. She left the hospital exhausted and slept most of the two hours it took us to drive during late afternoon Bay Area traffic from Stanford to Orinda where we are staying from Friday through Sunday morning when we will return to Mt. Shasta.

A weak voice and some freezing up when beginning to walk can be an issue after the initial programming of the DBS system, or it might be the result of fatigue. We will just have to see as the days go by. The trial now is for Luz to adjust to the stimulation, adjust to a new medication regimen, and get enough rest to regain her natural energy level.

The turn on has not yet been a "Ta Da" experience because there is so much to rebalance. We do get glimpses though. When she awoke from her 2-1/2 hour nap on Saturday she was walking normally, her voice got better, and she had good energy. We went for a nice walk on the trail at the Lafayette Reservoir. This was a nice "chill day" and we thank Bill and Penny for letting us be at here at their home and get some necessary rest before our 300 mile trip home.

Luz is in good spirits as she understands the process and has confidence in her medical team. She is sleeping and eating well and is grateful to her great community of loving support. She is looking forward to returning home and being with family and friends.

Aloha, John

Saturday activation update

Luz's DBS system was activated on Friday. I received this note from John this morning. - Diana

Its Saturday morning and it is still too early to report anything conclusively. Luz had about 6 hours with the medical folks at Stanford yesterday. We are experimenting with her medication in relation to the DBS and still have not found a balance that is satisfactory. I will send more info and give a report in the next day or so, as we should have more experience under our belt.

Aloha, Juanito

Party Pics from Sunday

Megan & Luz at the party last Sunday

The Mt. Shasta bald-headed dancers!

Who of us did not learn this phrase from our dear Luz!

John y Luz

Last but not least... the cake!

Tuesday - Luz has Spring in her step!

Luz hiked for two miles around our valley with Claudia today. She has been full of good energy, increasing each day, a good sign as she approaches system turn on and calibration this Friday. - John

Tuesday - update from John

On Sunday evening, Luz was celebrated by our community of family and friends at the home of Paul and Megan. About 40 of us gathered to share a great meal and stories. Everyone was in awe of Luz's courage and were overjoyed by her amazing recovery from surgery and her effervescence. She glowed with happiness at the power of the loving presence of this amazing community who have supported her with love, prayers, meals, companionship, celebrations, and rites of passage. Luz says that as she is feeling her strength return and anticipates her ability to regain her independence, she is looking forward to thanking each person individually for their contribution of support during her Parkinson's journey. She is inspired to give back by finding ways to help others who might benefit from her experience.

This Thursday, we will again journey back to Stanford for Luz's Friday D-day during which her Deep Brain Stimulation system will be turned on and calibrated to address her symptoms. Beginning Thursday evening she will again stop her medications so that on Friday, the system can be tuned to her Parkinson's symptoms without the interference of medication side effects.

As Paul said last night, the surgery was like building the airplane and now comes the equally important event of tuning the plane so that it has a perfect flight. Both aspects, surgery and system calibration, must be impeccably performed to achieve optimum results from this whole procedure. Luz has full confidence that this will be so, based upon her experience so far with the amazing team at Stanford: Dr. Jaime Henderson, Dr. Helen Bronte-Stewart, and their key staff members including Traci Hornbeck and Wendy Cole.

John Hawk, March 24

What IS Activation?

Next week Luz's DBS apparatus will be "activated." What does that mean? Web MD says, "In deep brain stimulation electrodes are connected by wires to a type of pacemaker device (called an impulse generator, or IPG) implanted under the skin of the chest, below the collarbone. Once activated, the device sends continuous electrical pulses to the target areas in the brain, blocking the impulses that cause tremors."

For a more complete description, visit
http://www.webmd.com/parkinsons-disease/deep-brain-stimulation

Sunday morning

Luz slept for much of the day on Saturday and was feeling much better this morning. Rest and ibuprofen are helping her healing process. John will send a longer summary, and pictures from the Welcome Home Party, tomorrow.

Picture of Luz & John yesterday morning, before driving home to Shasta. Luz and John arrived home safely.







Saturday morning, talked to Luz. She is a bit sore, but taking it easy and resting. She's looking forward to seeing everyone at the Welcome Home Party on Sunday (see previous blog post for details).

Suture Removal Successful

Today, Luz had her sutures taken out at Stanford Hospital. The doctor successfully removed 18 staples from each side of her head, 6 from the back of her head, plus stitches from her chest. John said Luz's energy has been good and her body has healed well since the surgery last week.

Luz was able to get an appointment for activation earlier than expected, because another Parkinson's patient cancelled. John & Luz will drive home tomorrow (Friday), and return next Thursday (3/26) to the Stanford Guest House.

Activation of Luz's DBS apparatus is scheduled for Friday, March 27.
John will send a further update once he arrives home to Shasta.

Diana