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.

Dashed Dreams

As a baseball fan, I'd always dreamed that if I had a boy, he would play ball. I had visions of being a Little League mom. I imagined a minivan full of baseball gear. I even entertained, once or twice, the fantasy of my son being a professional baseball player.

As it turns out, my son, D, is not a baseball player. He hated playing T-ball last year (and really, who can blame him? He was 5 years old and bored to tears standing in the outfield or sitting on the bench). He never took to soccer. He did seem to enjoy basketball somewhat, which he played this past winter, but didn't LOVE it. He just isn't into sports. He does like to run, and I will encourage that. Who knows, maybe as he gets older he will be on the track or cross-country team.

What he DOES love to do is read, build things, do science experiments, watch TV, and play Wii. A far cry from the sports-loving baseball fanatic boy of my dreams. We get to read together, go to plays, and play games.

I had always imagined that, if I had a girl, she would spend her days playing house, dressing up in tutus, and excelling at ballet. I pictured a closet full of pink dresses. I envisioned watching all of the Disney Princess movies again and again.

In reality, my daughter, A, never plays house. She plays with her kitchen set, and I hear her pretending to talk to her friends from school, but it's not as elaborate a make-believe scene as playing house. She does not like wearing dresses, and needs to be bribed to wear one. She is in ballet and tap, but her balance and coordination keep her from being the graceful ballerina I had pictured (trust me, I'm ok with that. The fact that she is in dance class to begin with satisfies all of my expectations). And watching ANY movie is futile; she prefers shorter TV shows.

When I got married 10 years ago, I imagined growing old with my husband, J. I assumed that we would have a healthy life together, that if God-forbid we should experience any health crisis it wouldn't be until we were well into old-age.

Instead, I have a husband with Young-Onset Parkinson's Disease. He was diagnosed about 5-6 years ago, when he was in his early 30's. Having YOPD in the family wasn't even on our radar of things to worry about when we got married.

You get what you get, and you don't get upset. Right?

The thing is, I have learned to roll with the punches. Some of my expectations were silly (not all boys love sports; not all girls love dresses) and some were appropriate (who expects their young spouse to get diagnosed with a degenerative neurological disorder that typically afflicts people in their 70s?). Regardless, even though I have had my share of heartache during the past 5 years (a daughter with a million medical issues and developmental delays, a husband with YOPD) I am happy with the family I have. I love my husband, son and daughter more than anything in the world. They are who they are.....and they are not the people I had long ago dreamed about.

They are better.

Celebrating 10 Years of Marriage

A few days ago J and I celebrated 10 years of marriage. Ten years! A decade! For the most part, it seems like much shorter. Then again, we've been through so much in our married life that in other ways it seems like much longer. J being diagnosed with Young-Onset Parkinson's Disease at the age of 35 and having a medically fragile daughter are certainly things that most couples don't have to deal with early in marriage.

I am so thankful to J, as he allows me to be me. He stands by me as I search for my passions, for my meaning of life. I am NOT the same girl he married ten years ago. I have evolved so much. While my core is the same, and I hope I am a better version of who I was a decade ago, I know I am different. And that seems to be okay with J.

Whatever I want to do he supports, as he wants me to be happy and grow:

When I decided I wanted to get back into my working out, and added half marathons and triathlons to an already busy life, he not only readily watched the kids for hours on end while I exercised, but paid for my race entry fees, running shoes, a wetsuit, and all the expensive gear that comes with sport.

When I decided I wanted to launch an educational foundation at my son's elementary school, he encouraged me and even volunteered to maintain our website.

When I need a night out, whether it's going out to clubs with my best friend or having martinis with the girls, he practically pushes me out the door.

When I got into cooking a few years ago, he supported me signing up for cooking classes and is eager to try new dishes I prepare.

When I realized that I wanted to incorporate more Jewish tradition into our household, he loved that we started to celebrate Shabbat each weekend, among other holidays.

When I want to do something new (teach a class, join a book club, learn to play guitar) he is all for it.

When I get in a bad mood, he gives me the space I need to work my way out of it.

When I have a problem that needs solving, he tries to fix it.

Don't get me wrong.....no marriage is perfect and rosy. We've had our ups, and we've had our downs, but we always have each other's backs and get through it. I truly think I'm the yin to his yang....we complement each other so well. I could not think of a better partner, or husband, for myself.

I'm Going There: Young-Onset Parkinson's Disease

I started this blog in January, with the goal of writing about my life, which has a lot of good and some bad. While I have written extensively about my daughter and her medical issues, my son and parenting challenges I face, training for my half marathons and triathlon, cooking, and a host of various other topics, I have yet to write about my husband. And this is a big one.

You see, my husband has Young-Onset Parkinson's Disease (YOPD, or PD). He was officially diagnosed a few months before A was born, at the age of 35, although he was having symptoms before that.

I am not sure why I haven't written about J having PD. It's probably due to the fact that I hate it, it upsets me to no end, and I like to pretend it isn't happening to him. To us. To write about it is like opening a can of worms for me. But I think that now, eight months after starting this blog, I am ready. I will start slowly with this post....I will write about how he came to be diagnosed with a disease that usually hits people in old age.

It all started (for all intents and purposes) in 2004. I was pregnant with D, our firstborn. I went on the computer one day to get online, and was about to google something when I noticed that J had just done a search for "shaking finger" or something like that. I thought that was an odd thing to google, so I asked him what was up. He told me that his finger had been shaking recently, and he didn't know why. I urged him to go to his doctor to get it checked out. Of course, being a typical guy, J didn't go right then, and wanted to wait until his scheduled physical in the fall. I kept telling him to get it checked out sooner, but he didn't listen to me. (Note: I am not making judgements. It took me years to finally get my headaches checked out by a doctor; now I am diagnosed with migraines. I get the not-wanting-to-know thing).

Anyhow, in the fall of that year, J finally went for his physical. He came home in a good mood, saying that his doctor told him that the tremor in his finger was due to stress and was no big deal. I flipped out; I knew it wasn't stress-related. I am (in my past life) a Marriage and Family Therapist, and I know the physical symptoms of stress and anxiety. People may get a raised heartrate, sweaty palms, and decreased appetite, but a shaking finger is not a stress symptom. I urged him to go to a neurologist. He didn't want to go; he trusted his primary physician. Finally I told him that if he didn't go, I was going to call his mother and tell her what was going on. This scared him into action--he knew his mother would freak out!--and he went back to his primary care physician to get a referral for a neurologist.

Finally J saw the neurologist. As I had suspected, the shaking finger WASN'T stress related. The doctor said it could be caused by many things: Parkinson's Disease, a stroke, a brain tumor, or other diseases. I remember the next morning getting in the shower. J had already left for work, and our newborn, D, was in his bouncy seat next to the shower stall. I was freaking out, thinking about my husband possibly having a brain tumor, and here we were a young married couple with a newborn son. I sobbed and sobbed. I prayed that day for it to be PD, because the idea of some of the other possible causes were too frightening to imagine.

J soon began a series of tests to find out the cause of the tremor. Blood work, urine samples, MRIs...you name it, he had it. The thing with PD is that there is no test for it. Unlike cancer, you can't take a biopsy to diagnose it. Unlike diabetes, you can't take a blood sample. With PD you have to rule everything else out, and what you're left with is Parkinson's. A year or so later, his neurologist was convinced that he had PD. Our daughter, A, was born in June of that year, and if you're a faithful reader of this blog you know what a roller coaster we've been on with HER!

Since then the tremor in his finger has gotten worse. His whole right arm shakes now, and he is just starting to feel a bit of tremor in his left hand. His speech and gait are affected a bit. He is on lots of medications, which seem to help a bit.

I'm sure at some other point I will write more about this...my anger, my concerns, my fear....but I feel better for getting this written down now. I am hopeful that there will be a cure one day; I just hope it's in time to help my wonderful husband.

What Do You Wish For When Your Wishes Have Come True?

I have expressed on my blog before just how grateful a mama I am. Despite all the curveballs that life has thrown at me and my family (not the least of which is a husband with Young-Onset Parkinson's Disease and a daughter with a huge list of medical issues), I do appreciate all that we have and how good we have it.

Since A got her feeding tube and breathing tube removed a week and a half ago, I have been thinking of all I had wanted for A in 2010. As I have mentioned before, my big goals are all checked off:

walk

develop more language, both receptive and expressive

eat and drink enough to get her feeding tube removed

get her breathing tube removed

My 2010 goals for her are all checked off, and it's only July! Which leads me to a thought: what do you wish for when all your wishes have come true?

Yes, there are lots of thing I wish for. I wish for A to run and jump and skip and develop even more gross motor skills. I wish for her language to get even better, and her speech to become even clearer. I fervently wish for a cure for Parkinson's Disease. Heck, I will even admit that I wish we would win the lottery!

However, I know what I already have, and am grateful. In Judaism, there is a song we sing every Passover called "Dayenu". Dayenu means "it would have been enough for us". As in, "it would have been enough for us if God had led us out of Egypt", etc. In my case, it would read something like this;

It would have been enough for us if A was only able to sign; instead she is able to talk, with a great vocabulary and in increasingly complex sentences.

It would have been enough for us if A was only able to use the walker to ambulate; instead she is walking around as if she's been walking for years, instead of for only 6 months.

It would have been enough for us if her feeding tube was removed, as was the plan; instead, her breathing tube was also removed and she is tube-free.

It would have been enough for us if she were only able to hear a little bit; instead, although she is deaf in one ear, she is aided-to-normal (with a hearing aid) in one ear.

You see, in my mind, everything that A does for now on is the icing on the cake, so to speak; it's all gravy (why are all those great metaphors food related?). I'd love her to run one day, but it's ok if she doesn't. I'd love her to be able to speak clearly enough that she is understood 100% of the time by everyone, but again, it's ok if she doesn't. She has a solid base now, and anything she does from here on out is...well....the cherry on the sundae. Dayenu.

The Grass is NOT Always Greener

For the most part, I think I do a pretty darned good job of not letting my life circumstances get me down. If I dwell on it----a husband with Young Onset Parkinson's Disease! A daughter with a gazillion medical needs!--it only gets me down...and really, life is good. I try to remember that everyone has special needs of some sort, and that makes me feel better.

I learned this lesson really well a few years ago. A was about 18 months old, and D was 3 1/2. Once a week we would take a free music class that I had found. It was fun to be able to take a class with both my kids. One day, I was in a rare bad mood. I forget now what had happened, but something had happened to make me throw myself a pity party. Perhaps it was raining that day and I had to lug two kids plus A's trach suction machine. Perhaps D was being particularly whiny. Perhaps I had my period and was extra irritable. Who knows? The point was that I was feeling sorry for myself and what life had thrown at me.

In walked a mom that I had never seen before. She was stunning---model gorgeous--and had with her her beautiful daughter. I watched them interact with growing jealousy. Clearly her daughter, who was younger than A, was typically developing. She was walking and talking just as someone her age should. My own daughter had just started crawling, at age 18 months. For some reason that day, it was hard for me to see typically-developing kids in such sharp contrast to A.

"They are so lucky," I thought to myself. "They are so beautiful, so typical, so NORMAL. They probably don't have a care in the world." I even found myself getting angry at their carefree life I imagined they led.

After class, the mother came over and introduced herself. She was really nice, and in the course of conversation she let me know that her older daughter (who wasn't there that day because she was in school) had autism.

Well.

Color me stunned.

In an instant, my whole view of her changed. Here was a woman who yes, had a typically developing daughter, but was also walking a different yet parallel path to mine. We are not dealing with autism in my family, but we have struggles just the same. Yet just looking at her, so beautiful and at ease you would never know just what struggles she had.

It illustrated perfectly the old adage: you never know what goes on behind closed doors. People have money troubles, marital discord, work problems, and medical issues all the time. Many are easy to hide from the rest of the world, and unless you KNOW the person, you may never know what demons they are wrestling.

From that moment on, I look at people differently. I know that everyone has issues to deal with. It may not be Parkinson's Disease or a tracheostomy, but it's something. And that is a tie that binds us all.

Grateful Mama Deconstructed

I've been blogging since January, and I just realized today that I should explain the title of my blog!

First of all, and those of you who know me in real life already know this, but I used to be a huge Grateful Dead fan. I'm not quite the Deadhead anymore, but I still enjoy their music. And that period of my life (no, I never followed them on tour or anything, but I did see them) was really fun. In fact, my pseudonym, Sugar Magnolia, is the title of one of my favorite Dead songs. I wish I could be like many bloggers I have found and post my real name, my kids' real names, and photos, but I am not comfortable doing so. Hence, the pseudonym.

But beyond that...I truly am grateful. I know people may look at my life and wonder why. My husband has Young Onset Parkinsons Disease. My daughter has myriad physical issues, including a trachostomy, hearing loss, a soon-to-be-removed feeding tube, and just started to walk independently at the age of 3 1/2. My son is "typically" developing, but while he is amazing, typical also comes with the usual problems kindergarten-aged boys have. I never seem to have enough money, time, energy, or patience.

And yet.

And yet I am grateful. I am grateful for a husband that loves me more than anything. I am grateful for his job, which provides for us to live a comfortable lifestyle. I am grateful for the opportunity to raise such a smart, kind, empathic son. I am grateful for the gift I was given in the form of my daughter, who has introduced me to new worlds and made me realize the true meaning of gratitude. I am grateful for a nice house to live in, food to cook, laundry to do, a minivan to drive. I am grateful for my parents, my sisters, my brothers-in-law, and the rest of the family who love MY family and support us every step of the way. I am grateful for my friends...some close friends without whom I'd never be able to do this journey, and many, many other friends who have supported me, rooted me on, and been there for me.

Without my particular family situations, I would never be grateful for food stains on clothing (that means my child is eating!), for toys strewn around the house (that means my children are engaging in appropriate play!), for phone calls and emails to return (that means I am loved!). I would never be grateful to fight insurance issues (thank goodness we HAVE good insurance!), to chauffeur my children all around town (I have dependable wheels and places to go!), to welcome my husband home each night with a freshly cooked meal (which means not only do I have food on the table, but a husband who comes HOME and is a great father to our kids).

Yes, I am grateful, in every sense of the word. Don't get me wrong...sometimes I allow myself to throw a pity party, but they don't last long. I have true gratitude for my life and those in it, and I hope that my blog reflects that.

And the Grateful Dead WERE a great band!