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

Welcome Home Party on Sunday

WELCOME HOME GATHERING for Luz
Sunday March 22 @ 6:00pm
@ Megan & Paul's house

Mt. Shasta community - please join us to welcome Luz back home with love and light. This is a potluck gathering. Please call Megan to RSVP and let her know what you will bring 530-926-2378, or email pnmhawk@sbcglobal.net.

Wednesday status

Just a quick update on Wednesday: The lump in Luz's neck decreased in size since yesterday and she is doing well. She has an appointment at Stanford tomorrow (Thursday) to have her sutures removed.

John & Luz are at the Stanford Guest house tonight. The phone number at the Guest House is (650) 926-2800, and their room # is 202. They will be there only one night. Thursday they will go to San Francisco to stay with Doug Von Koss through Saturday, then will drive back to Mt. Shasta.

Forgot to note - last Sunday, on their way home from a visit to Shasta, Chris and Janel Wiley met up with John & Luz and they shared a lovely dinner together. ♥

Diana

Tuesday progress

I spoke to John today, just before he went hiking around the Lafayette Reservoir with Bill (who they have been staying with). I also spoke to Luz at the house afterwards.

Luz is doing ok today. This morning she noticed a lump on the side of her neck, so she and John went back to Stanford to have it checked out. The doctor said it was a hematoma, probably from a blood vessel being nicked during the surgery. The doctor expects the hematoma to shrink in a few days. He will evaluate it again when John & Luz return to Stanford on Thursday to have her sutures removed.

Diana

Sunday in Orinda

John & Luz left Stanford on Friday and are currently staying at a friend's house in Orinda, CA. We spoke to Luz last night - her voice was clear and she sounded good. This morning, I spoke to John. Luz is still a bit sore from her second surgery (the implants were attached to muscle tissue, which is now healing), but her attitude is positive and her spirits are up. She is sleeping well and has a great appetite.

For a few days after surgery, Luz's symptoms disappeared due to inflammation. Now, as her brain heals, the Parkinson's symptoms are starting to return, so she is being re-introduced to her medications (L-Dopa and Mucuna Pruriens). This is as expected. The disappearance of symptoms was a window into what Luz may experience once the DBS apparatus is activated in April.

On Thursday 3/19, Luz will return to Stanford for removal of sutures, and evaluation. She and John plan to stay in San Francisco for a few days afterward to monitor her healing process, then will return to Shasta on the weekend.

Diana

Day after Surgery

From Nadine:

Luzita is recovering at an amazing rate. Less than 24 hours after her second surgery, she is no longer taking pain medication, and her appetite is growing with each meal. She is vibrant, laughing, and her spirit is so strong.

We went for a walk this morning in a wheelchair and had lunch outside at the cafeteria just up the hill from the Guest house.

John and Luz went for another wheelchair walk this afternoon followed by a fabulous meal. Luzita ate to bursting, really (her words...)!

John spent the day at a Parkinson's seminar in San Jose sponsored by the Parkinson's Institute, Stanford University, and the Davis Phinney Foundation. (In the picture below: Dr. Henderson, Davis Phinney, and John). Click here to learn more about the Davis Phinney Foundation, whose mission it is to improve the lives of people living with Parkinson's Disease.

From John:
Our neurosurgeon Dr. Jaimie Henderson and neurologist Dr. Helen Bronte-Stewart were featured speakers along with Davis Phinney who was instrumental in facilitating our journey to Stanford. It was so good to meet Davis in person and to be able to hug and celebrate our journey together. I am excited by the research that is taking place and the breakthroughs that are on the verge of providing new therapy possibilities for individuals suffering from neurological disorders. Dr. Henderson will have a breakthrough paper published in mid-April that discusses how colored light can be targeted to affect specific cells whereas current DBS has a more generalized affect. This will allow neurosurgeons in the future to be even more precise in customizing their efforts to meet the specific needs of individuals.

It seemed like 5 - 6 hundred people attended the event. To see so many people affected by Parkinson's in the same room gave me a perspective about the disease I had not had before and gave me a way to measure Luz's condition. As Dr. Bronte-Stewart said, Luz is still at an early stage as she has no rigidity and I saw this to be true. Mixing with PD patients and their caretakers, I did feel part of a tribe of exceptional people who are moving through their experience with courage and consciousness.

OUR SCHEDULE:
Fri. 3/13: Depart from Stanford Guest House
Fri. 3/13 - Thurs. 3/19: Staying in Orinda with friends
Thur. 3/19: Return to Stanford to have Luz's staples removed
Thur. 3/19 - Sat. 3/21: Stay in San Francisco with friends
Sat. 3/21: Return home to Mt. Shasta

Surgery #2: Another successful day!

Luzita came through her second surgery with flying colors!

Doctor Henderson inserted two batteries with stimulators in her chest and also installed the connecting wires to the electrodes in the top of her head. He was very happy with the surgery and said Luz did very well.
She's our hero.

Back at the Guest house afterwards, Luz had some chicken soup, crackers and even a little bread. Her appetite is good. She is tired and sore and happy the day is done.


Luzita asked me to send her love to everyone who reads this...and everybody else too!

Your love and support is deeply felt...
In love & gratitude,
Nadine

Today's Surgery

Nadine will probably add to this, but I wanted to just update you on my latest conversation with Juanito.

Luzita checked into the hospital around 10 AM today and was in surgery at 1:30 PM. It took until 6 PM for her to come out because they watched her until the anesthesia wore off completely. She's resting now at the The Stanford Guest House. Dad will let us know how her recovery goes. The doctors were happy with how the surgery went, so now she's just got to heal and the worst will be over.

Lots of love to you all,
Marisa

How to Comment

Several people have asked how to add a Comment to a Blog posting. Below each day's posting, in the bottom right corner, click on the "Comments" link. Write your comment in the box. In the "Comment as:" menu, select a Profile. If you don't have one, select Name/URL. Fill in your name and leave the URL field blank. Click Post Comment when you're finished.

Anyone can comment, you no longer have to create a profile to do so. If you comment, please sign your name so we know who you are. Thank you to all who are sending Luz your love and prayers.

We will post again later with an update on Luz's surgery. Thanks,
Diana

Monday 3/9 Update

Update from Nadine, Monday PM:

Luzita is doing amazingly well. We went for a drive today, west of Stanford towards Woodside and the hills above, a perfect Luzita day. I gave her a foot massage when we got back and now she's taking a nap before dinner.

(Luz admiring her Juanito on the cello)


Luz has no pain, her appetite is flourishing and so is the spark in her eye. She has two scars on top of her head that look like zippers. I call her my little punkette and John calls her his little devil!


She is so strong, so commited, so clear. Wow. It looks like she will be up for the next surgery on Wednesday.

Beautiful Day in Menlo Park

Luzita is quite alert today, her voice is stronger and she ate a huge meal last night from her favorite Thai restaurant. We changed her bandages and she's healing well. She was up telling stories this morning, but is now asleep. She needs a lot of rest.

She didn't have any spasms in her leg last night. She had some pain in her head, which we controlled with medication. All signs point to a good integration of the stimulator and healing progress. Today, we can see there will be a good possibility she can have her second surgery Wednesday. She's progressing every day.

Nadine arrived late yesterday and Megan left last night. Nan is leaving today, but before she goes, we are taking Luzita out for a stroll in her wheelchair. It's a beautiful day in Menlo Park and the grounds around the guest house are park like.

We will wait until after the surgery Wednesday to decide how long we will stay in Menlo Park. We will be in the area at least until the 19th.

Diagram of DBS Apparatus

Here is a diagram of the electrical "installation" that is in place for Deep Brain Stimulation. Click on the image to enlarge the picture.


Image from http://www.parkinsonsanddbs.com

Diana

Sunday

I spoke to Juanito late this afternoon, just after getting home from our trip to be with them this week. He wanted me to post the surgery scheduled for next week.

March 11-Luzita will have a second surgery for implantation of the stimulator, batteries, and connecting wires to the electrodes.

I'll check in with them in the morning and give you a progress report. As of this afternoon, Luzita was recuperating by sleeping a lot and eating delicious and healthy food. She's doing well and is under the loving care of John, Megan and Nan.

Much love,

Marisa

24 hours after surgery

Last night Luzita ate a good meal and slept a lot. She'd wake up every hour or so and tell a story. She told a story of a certain chess game that occurred on the farm between David and Paul oh so long ago. We got the first and then the second Carajo during that story! Apparently, David was about to win the chess match, the chess board went flying and David was out the door like a shot, with Paul on his heels. David ran to a big tent they had on the farm that was a temporary storage for things that would not fit in the little stone ranch house. David hid behind some piece of furniture, Luz behind another. Neither boy knew Luz was there and watching them. Paul roved the isles, telling David what he'd do to him when he caught him, David taunted Paul, challenging him to try and catch him. Luzita, surprised both boys by telling Paul if he ever laid a hand on David...Carajo! From the other side of the tent came David's voice, Aww Mama, you ruined it! Carajo!!

Luzita ate Thai food from her favorite Thai restaurant in Palo Alto. She could walk around and has a good strong hug. Her speech is clear, and though she'd say some random things, they all made sense. At one point, she was sleeping with her head on Lila's shoulder, and all of a sudden said "I always thought you'd marry Chris." We all had a good laugh at that, and remembered Paul and Megan's wedding, when Lila and Chris became good friends. We were laughing (gently - it hurts Luzita to laugh), telling stories and knitting until about 9 PM, when we tucked Luzita into bed and turned out the lights.

This is Marisa writing this. I called the Stanford Guesthouse his morning at 9 AM to get an update on how the night went. Luz, John, Nan and Megan were all still asleep, so I think that's a good sign. I'm driving back to LA now, but will check in with them when I get home and will update the blog tonight. Dad will e-mail pictures, and between Diana and I, we'll keep the blog up to date.

Enjoy your Sunday and much love to all!

Luzita Released

The air bubble that was found is now gone.
Luzita has been released from the hospital, and is now resting at the Stanford Guest House.

Day after Surgery

Today, an air bubble was found in Luzita's brain. She is on oxygen so that her body will absorb it and she's under observation. She is still expected to leave the hospital today at 2 PM, so the prognosis of her recovery is good. Please keep the prayers flowing and the candles lit and we'll keep you all posted as the day progresses. She can receive visitors starting at 11 AM today.

Much love to all and thank you for all the love and support!

Luzita after surgery! She's smiling, but shy. Love you Luzita!

Dr. Henderson tells John everything went great!

Deep Brain Stimulation Surgery Day

Today, Luzita arrived at the Standford Medical Center at 9:00 AM. Her surgery started at 1 PM and was finished by 4:30.

When we checked in, it was like a celebration. All of us were giggling and excited to be here. Our mood spilled out over the waiting areas.

We waited all afternoon, watching the monitor that posts the progress of all the patients. Doctor after doctor came to give other waiting family members good news, so we fully expected the same. When the bar showing Luzita's number turned red, indicating the end of surgery, we all waited in anticipation for the doctor to let us know how it went.

When Doctor Henderson, Luzita's surgeon, came out, we all knew it went well because he had such a big smile on his face as he greeted Juanito. Luzita did great! A bit later her neurologist, Helen Bronte-Stewart came out to confirm the same. She's very pleased with how everything went and gave dad some advice on medications and after care.

We are all so happy to be here and under the care of such a fantastic, caring team. We also got to meet Kathy, Luzita's surgical massage therapist, who worked on the tremor in Luz's leg throughout the procedures. She has a wonderful spirit and a sparkle in her eye.

Now, we are all waiting for Luzita to finish post operation procedures. We expect her to be wheeled through the hallway here in just a bit and then we'll be able to visit her once she is settled into her room.

Check back later this evening for post op photos, more photos of our day and Luzita's impressions of her experience.

Thank you all for your prayers, love and light. This has been an amazing experience. We celebrate this opportunity and are thrilled to have you all in our lives sharing it with us!

The journey begins from Stanford Guest House where John and Luz will stay until March 13th

John at entrance of Stanford Medical Center. He's just parked the car and is going in to take Luzita up to Pre Op Check in

Arriving at Stanford Medical Center

Check in, 9:30 AM

Waiting to go in to pre op

Luzita's number 48691. This monitor showed her progress. Green means, surgery has started!

In the waiting area. Surgery took 4.5 hours

Kathy, Luzita's massage therapist.

Luzita's Neurologist, Helen Bronte Stewart, post op, was very pleased with the surgery & suggested John & Luzita stay until incisions heal.

Order of things Today

Please start on March 5th to read the first blog posting for today to read what happened. Scroll up from there to view pictures in order. Next time we'll post from last to first so pics are in order when scrolling down. For now, scroll up....or down. You may also have to use the menu on the right because all the postings for today do not fit on one page.

Juanito plays a lullaby for Luzita. It's been a long day.

Luzita with her beautiful turban.

A small electric screwdriver is used to insert screws. Luzita's head is the wrapped in gauze.