Since the first turn on of the
Deep Brain Stimulation System five weeks ago, Luz, full of hope, entered this new unknown territory. Will this really work? At first we all saw results-she was steadier and clearer of speech and thought,and experienced no dyskinesis.
After a week or so Luz felt a decline, experienced some discouragement, and started taking more and more medications to compensate and to try to mitigate certain symptoms including problems with walking and leg spasms.
Then the dyskinesis started to return with increasing frequency and severity. So last Friday, May 1, I spoke with the folks at Stanford and told them what she was experiencing and they asked that I send them a description of what medications Luz was taking including the dosage and timing.
They responded by phone within an hour and said Luz was way over medicated-the source of dyskinesis- and then gave me an adjusted pattern for her to reduce her medication load.
On Monday, May 4, we traveled from
Mount Shasta to Stanford and as of 9:00pm she went off meds in anticipation of her 10am Tuesday appointment with Dr. Bronte Stewart at Stanford
Neurology.
Tuesday morning- when Luz arrived for her appointment, she was walking fine with no dyskinesis. I was shocked that she was doing so well since she had been off meds for 14 hours. She was better than she has been for weeks.
When the medical staff put her through her paces-arm movements, foot tapping, walking, and balance testing Luz looks quite normal and the whole staff that has supported her comes out into the hallway and celebrates her advances and say-she does not even look like she has Parkinson's. Dr. Henderson, Luz's neurosurgeon, with a tear in his eye gives Luz a big hug. Luz is beaming with joy.
Well, the long and short of it is that Dr. Bronte Stewart says that after one month Luz is doing fabulously and that she feels that the problems Luz is experiencing are medication related and not an effect of Parkinson's or the DBS system. So she prescribed a gradual reduction in meds to zero over the next 20 days so Luz can rely on the DBS system to do its work. Then she did a minor tweak of her DBS system.
Luz's confidence soared. Dr Bronte Stewart explained that dopamine is an upper and that long term users as they reduce meds may feel anxious or blue and that this is normal. Her solution is to suggest to Luz is that at these times she do something she loves. Then the parts of the body that produce dopamine that have been "asleep" because of the medication will start to awake and Luz will feel better. She said to be patient. This takes time, as you can see you are doing well and you will only get better. Luz's next appointment will be in about three months.
I am so pleased that Luz is feeling more confident and hopeful,that she is experiencing the system really working, and that she has actually been put on a path of no meds.
Two days after her Stanford visit Luz is continuing to do well. The most extreme of her difficulties have stopped with her medication reduction-dyskineis, leg spasms, and stutter step walking. She still has periods when she feels slower but she now sees the light at the end of the tunnel and is so grateful for the wonderful care she is receiving from Dr. Bronte Stewart and the whole staff of the Neurology and
Neurosurgery departments at Stanford.
John Hawk
After Luz's encouraging checkup at Stanford in May, she and John headed to Yosemite for some camping and hiking with John & Claudia over Mother's Day weekend. The park revealed the true beauty of Spring. Luz was not able to participate in all of the hikes, but she enjoyed relaxing in the great outdoors and had a positive attitude about her symptoms continuing to improve in the coming months.
Luz is able to peel a cucumber for the first time in months
Armwrestling - Luz vs. Miguel - Luz won!
Luz steps onto the balance testing machine
Luz and Tracy checking steadiness of movement
Tracy manually checking Luz's balance
Dr. Sara Batya calibrates Luz's DBS stimulator
Luz speaking with her neurologist, Dr. Bronte-Stewart
The biggest difference we noted from the DBS is that Luz has less dyskinesis (involuntary movement) in her body. She can now sit still on the couch, hold a book to read, chop vegetables, cook, and walk more smoothly. The recovery process takes up to 6 months, so she may experience greater benefits from the DBS over time. John has reduced her medication, and is working to find an optimal balance with the meds and DBS where Luz feels the greatest benefits with the least number of symptoms/side effects. John will be sending more info soon.
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!
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."
From Nadine:
From John:
Update from Nadine, Monday PM:
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!
