Young Onset Parkinson's and Deep Brain Stimulation

So two weeks ago, my husband, J, had brain surgery.

He's been diagnosed with Young Onset Parkinson's Disease for 7 years now, having had symptoms for 9-10 years.  I haven't written about the PD in my blog too much, choosing instead to focus my writing about my running, triathlons, and parenting (with and without special medical needs).  That said, the PD has been a constant presence in our lives for almost a decade. J's symptoms have steadily progressed, going from a slight tremor in one finger to full shaking in the arm.  Worse, even, is his walking.  Without his meds, J has a very hard time walking.  He lurches and stumbles, he shuffles and freezes.  When his meds are "on" (that is, when they have kicked in) he's ok, but when they're "off" it's hard to watch.  And he's on an awful lot of PD medications.

Did I mention he is only 42 years old? He's been dealing with this since he was 32.

The idea of a surgery called deep brain stimulation (or DBS) was presented to him a few years ago. This surgery involved implanting some electrodes in the brain. I'm not even going to pretend that I understand exactly what it does, so if you are interested you can click here to read exactly what it is. All I really understand, science aside, is that it is supposed to greatly alleviate PD symptoms.  In fact, DBS is being used for other things; a TED talk spoke about it helped children with severe cerebral palsy walk for the first time.  The video below shows what a person with PD is like with and without the DBS working....it's truly remarkable.

J's neurologist, however, is very conservative. She didn't want him to have the surgery too early in the progression of the disease.  So for years, the DBS seemed far off in the future.  A few months ago, however, she said she thought J was ready.  After meeting with the neurosurgeon, who thought J was a good candidate, and getting cleared by a speech therapist and psychologist (apparently swallowing and memory can be affected by the surgery) the surgery was scheduled for Wednesday, August 7.  My dear sister, R, flew in from out-of-state to take care of the kids.  He was supposed to only be in the hospital one night. (A battery pack will be installed August 26, and the whole system will be officially turned on September 9).

I brought J to the hospital early that morning. I was with him while he had his vitals taken and IV put in, but then I had to leave. My best friend came to sit with me all day.  The day was long; not only was I waiting for J to get out of major brain surgery, but my mother was also undergoing her 3rd round of chemo that day for ovarian cancer, so all in all I was worried about a lot of people.  After about 6 hours, the neurosurgeon came out and told me that everything had gone great, and he considered the surgery to be a success.

After he was in the recovery room for a while, he was brought up to his room, where I would finally be able to reunite with him.  I noticed immediately that his breathing didn't seem right; every few breaths he would shudder, as if he had a chill, although he wasn't cold.  My best friend and I kept asking for a doctor to come, but it took hours. In the meantime, besides the shudder, J looked fine. He was alert, although a bit groggy, and the only pain he had was in his forehead from where the halo had been placed to keep his head still during surgery (of note, our daughter, A, wore a halo for 2 months when she broke her neck last year).

Finally a neurosurgeon (not the one who performed the surgery, though) came in.  By this time, the shuddering had seemed to subside. The doctor did a quick neuro exam on J, asking him to touch his fingers, etc. When she asked him to show her his teeth, he smiled.  His smile was lopsided.  The right side drooped down significantly. Obviously, this freaked me out.  He was also unable to touch the doctor's finger with his own.  She ordered a CT scan, which she said showed no brain bleed and no stroke.  I felt a bit better, and went home to sleep (there was no place for me to sleep over in his room).

The next morning, I returned to the hospital bright and early.  His own neurologist was in, and was worried enough about J's neuro test results to order an MRI.  This time, it showed a small stroke. It was only 6mm by 10mm, and was at the site of one of the electrodes.  Apparently, only 1-3% of DBS patients have a stroke. Of course, with my family's medical luck, J was in that "lucky" few.  He was hopeful that J would make a good recovery, as he was still strong.  He could still move his right arm and right leg, and had strength, but couldn't direct them. For example, he could not touch someone's finger with his own. And when he tried to walk, with a physical therapist using a walker, he couldn't take one step.  He just couldn't direct the limbs on the right side of his body. And his mouth was still drooped to the right.

As upset as I was, I was encouraged that the neurosurgeon was optimistic for a recovery.  And I spoke to our friend T, who is a neurologist. T reassured me that J should make a good, if not full, recovery, although it takes up to 6 months.  He was quick to caution me, though, that there is no guarantee. He said he's seen patients with big strokes that make a great recovery, and patients with small strokes that don't.  So I was cautiously optimistic while talking to both J's neurosurgeon and our friend on Thursday (the day after the surgery).   I'm not going to lie, though...I was scared. I was scared that he wouldn't make a good recovery, that he would never walk.  But it was my job to keep a brave face for everyone, as I always do. All in all, though, I was scared but extremely hopeful and optimistic.

The next day, Friday, J made remarkable progress.  He walked the entire floor of the hospital, using a walker and with the help of his nurse.  Now I KNEW he would be ok...he went from not being able to walk a step to walking the whole floor in 24 hours.  Saturday he discharged from the hospital and I took him to an inpatient rehabilitation center. He was there for a few days, where he received intensive (3 hours a day) of speech therapy, physical therapy and occupational therapy.  Within a few days, he was walking unassisted (not even using a walker), going up and down stairs, and typing with both hands.  He discharged to home that Wednesday, seemingly back to baseline and even being cleared by the neurologist to drive. He returned to work this week and worked a full week.

What happened to my husband is nothing short of another miracle.  Bad things happen to my family (ie my daughter's neck break last fall) but miracles happen.  With my daughter, her spinal cord wasn't touched when every doctor said she should have been rendered quadripalegic.  With my husband, he had a stroke and made a full recovery within a week.  I believe in miracles, and I believe we have guardian angels looking after us.  As one friend wrote me, "you have a lot of guardian angels, and they like to work overtime."

I am so grateful that J will be ok. It was a harrowing experience, with the stroke, but we came through the other side.  I am looking forward to the battery being implanted next week, and it finally being turned on in a few weeks.  The implications of what it could do for my husband and his symptoms are tremendous.

If you are interested in reading my husband's blog, and reading about this experience from his point of view, please click here.