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.

America's Finest City Half Marathon Race Recap ('13)

Yesterday I ran in my 20th half marathon, the America's Finest City Half Marathon (otherwise known as AFC).  This is the third half marathon in San Diego's Triple Crown Challenge:  if you complete the Carlsbad Half or Full Marathon in January, the La Jolla Half Marathon in April, and AFC in August, all in the same calendar year, you earn an extra medal at the end called the Triple Crown.  I had never Triple Crowned before, despite doing numerous half marathons in San Diego.  I first did AFC in 1999, but as that was my first half marathon ever, I didn't know there WAS a Triple Crown. Heck, I don't even know if the Triple Crown Challenge existed back then.  When I started running again 3 years ago, I had intended to Triple Crown in 2011.....but couldn't run La Jolla due to a family obligation.  I then intended to do the challenge in 2012, but couldn't do it for other reasons. I was determined that 2013 would be my year.

The trouble is, I'm injured. I have written extensively on this blog about the sciatic nerve pain I've been experiencing for the past year and nine months, but haven't updated that I finally have the reason: an MRI showed a herniated disc at L4/L5. I do need to write a post about this, but suffice it to say I haven't been running long distances lately.  I had decided about a month ago, when treatment for the herniated disc was still not working, not to do AFC.  I made the painful decision to downgrade to the adjunctive 5k race; it wouldn't qualify me for the Triple Crown medal, but at least I would be doing SOMETHING.  And, as of this past Friday morning, I had planned on doing just that---the 5k.

But I was unsettled.  I was sad....I really wanted to do this race. Not because I had paid for it----there have been several events recently that I couldn't do, due to injury, and I didn't care.  Not because it was one of my beloved half marathons---I have sold my Carlsbad Half Marathon bib twice in recent years, due to injury or travel plans, without a giving it a second thought.  And not because I love the race---while AFC is an okay course, it is far from my favorite. The truth was, I really wanted to do this race for two reasons. First, it would finally let me complete what I started with the Triple Crown.  And second, it would be my 20th half marathon...and this would bring me full circle. As I mentioned, AFC was my first-ever half marathon back in 1999...and the first half marathon I did when I returned to running after a years-long hiatus. I  have also volunteered at this race the past two years, handing out medals at the finish line in 2011 and handing out Triple Crown medals last year.  I wanted THIS race to be my 20th; it was poignant perhaps only to me, but it was poignant nonetheless.

So, what to do? I wanted to run it...but I was injured AND untrained.  I haven't run long since my disastrous half marathon at the end of April in La Jolla, where I cried in pain half the time.  Since then, I have only run up to 5k (3.1 miles).  But in talking to some friends, I made the decision, literally at the 11th hour at packet pickup Friday afternoon, to try the race using a run/walk method.  I did some research on the Jeff Galloway run/walk method, and decided to try it (it went great in training runs).  I would try to run for 2:30 minutes and then walk for 1 minute....and lower the running if necessary. I always take walk breaks anyway, but never prescribed at intervals and this seemed to help me in practice runs.  And I read on the race information (and actually confirmed this with a race director at the expo)  that that if a runner couldn't complete the race for whatever reason, a van would pick them up and take them to the finish.

Aside from the injury, I haven't run long in months!  But, I figured, I am still fit. I have still been biking and swimming and doing some running and doing pool running and the elliptical. I knew I had the fitness to actually complete it.

The way I looked at it, I had nothing to lose. If I didn't go at all, I wouldn't complete the Triple Crown.  If I did the 5k instead of the half marathon, I still wouldn't get my Triple Crown. If I tried the half marathon and had to DNF (did not finish) the race halfway through, I wouldn't get my Triple Crown, but I would have tried.  And best case, I would complete the darned thing as painlessly as possible.  The more I thought about it, the more convinced I was.  I saw three separate outcome possibilities, and honestly, I would have been okay with any of them:

1) Possible outcome #1:  I finish the race, slowly and using a strict run/walk ratio. I don't have any more pain than I would normally have (with the sciatic pain and normal half marathon pain). I finish in their time constraint (3 hours) and I am able to complete the race and Triple Crown.

2) Possible outcome #2:  I finish the race, slowly and using a strict run/walk ratio. I don't have any more pain than I would normally have (with the sciatic pain and normal half marathon pain). I don't finish in their time constaint, so I don't get either the AFC medal or the Triple Crown medal, but in my mind I am a finisher. I don't do these races for the actual medals anyway, I do them for the feeling of completion and accomplishment, so even without the bling I would be okay.


3) Possible outcome #3: I don't finish the race. I have too much pain and need to use the sag van to get me back to the finish, or I need to call my husband to come pick me up. I would be okay with this....quitting if it was too much for me would be a victory and at least I would have tried.

Once I made the decision to attempt the half marathon, I was at peace.  I got my stuff ready (it had been sooooo long since I'd pinned on a race bib!) and went to bed by 8:30.  I set my alarm clock for 4:00, hoping to be out the door by 4:30 (the one thing I don't like about this race is that runners MUST be bussed from the zoo in Balboa Park to the start line at Cabrillo National Monument.  The last bus leaves at 6:00, with a race start of 7:00, so to ensure that you get through all the traffic getting into the zoo you should leave very early). 

Of course, typical for me, I was up earlier than the alarm. I woke up at 3:30 and was out the door by 4:10.  I hit NO traffic getting into Balboa Park, found a parking spot close to the shuttles and was soon on the bus.  Once at Cabrillo National Monument, I had a few hours to wait. I was glad I had an extra warm throw-away sweatshirt to keep away the morning chill. I just relaxed, ate a Luna Bar and a Honey Stinger Waffle, used the facilities, found one of my friends, and watched the sun come up.  Finally it was time to line up and run!  One cool thing they announced was that earlier that day, 24 (I think) soldiers in Afghanistan also completed a half marathon, and would be receiving the same medals and t-shirts that we did. I thought that was awesome!

I started the 2:30 run/1:00 walk ratio from the very start. It was weird stopping to walk so soon, but I wanted to stick to my plan.  The first few miles carries out out of the National Monument, past the military cemetery.  The next few miles, through Point Loma, are always the best, as the residents there take to their lawns to spectate.  Here I saw this hilarious sign (referring to our sex-crazed San Diego mayor) and saw two little boys offering an "energy station", giving high-five slaps. I stopped and asked them for double energy, and was rewarded with a double high-five from each boy. 

The next few miles were uneventful. We left Point Loma and headed toward Harbor Drive. Amazingly, I was feeling good.  I had a little bit of pain, but frankly it was the same pain I feel all the time, whether I'm running or just sitting!  Whenever it might have not felt good, a walk break came on. I was really enjoying the 2:30/1:00 ratio.  The weather was perfect (and I mean PERFECT; we didn't see the sun the entire day and I never wore my sunglasses) and I had some gorgeous views of San Diego, the bay, and the Coronado Bridge in the distance.

Beautiful San Diego

Around mile 9, I started to have some pain. Not really the sciatic pain from my herniated disc; this was more the normal pain one would feel from running so far, untrained. My legs were not happy. Cardio-wise, I was fine (thank goodness for all the cross-training I do!) but my legs were grumpy. At mile 9 I downgraded my ratio to run 2:00/walk 1:00.  Soon, I was walking a bit more.  I was a tiny bit sad, since as of the 10k split I had been on pace to do about a 2:45 half (most of my half marathons average about 2:35) but I didn't really care---I wanted to keep my promise and not hurt myself.  So, at mile 10 I walked more and more, and actually I ended up walking most of the last 3 miles.

The last bit is always brutal---it's 1-2 miles uphill---but I took it nice and slow, not really even walking, more like strolling. I knew I would be ok on time, and I wanted to keep the pain to a minimum.  At mile 12, I started to really hurt all over, but at that point I knew I could easily walk the last mile to the finish line.  If I had felt that bad (mostly super all-over muscle rebellion) earlier in the race I probably would have called for the van to drive me to the finish line. But at mile 12? Of a 13 mile race? No way. So, I strolled it in, and ran the last .05 mile, crossing the finish line as I heard them announce my name. I finished in a tad over 3 hours, far from a horrible time considering how much walking I did, and still got both my AFC medal and my Triple Crown medal.

At the post-race festival, I couldn't find gear check (I had checked my throw-away sweatshirt).  I'm sure it was there somewhere, but I was so sore I didn't care and left it.  One logistic for anyone wishing to do this race: park at the zoo.  I parked across the street from the zoo, at the naval hospital.  This was good, in a way, since it's directly across the street from the finish area and I barely had to walk to my car. However, getting out is tough. I only spent about 20 minutes trying to exit the parking lot, but I heard others took over an hour.  The zoo, while a bit of a walk from the finish area, would have been a much easier exit.

All told, I am very happy I attempted this half marathon.  Even if I had had to quit, I would have been proud for trying and listening to my body. That I finished, and met my ultimate goal, while doing a lot of walking and listening to my body, was awesome.