Deep Brain Stimulation for Parkinson’s (Experience)

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In May 1992 my father (John W. Creed) was diagnosed with Parkinson’s disease.

According to Wikipedia, Parkinson’s disease is a degenerative disorder of the central nervous system.  But from my viewpoint, it is a disease that has slowly caused my dad to slow down and move in ways he has no control over.  It has also changed his appearance some.  More recently, either the disease or the meds he takes for it seems to affect his thinking.  He can get confused easily at times.

But he’s definitely still dad.  He has his same sense of humor, loves his family, loves bluegrass music, and playing guitar with his lifelong pal, Eddie.  He also has a deep love for God.  Both he and mom have lovingly instilled that in their children (Tammy and I) and their two grandchildren (Tammy’s daughters Becky and Kayla).

DBS

Over the years since dad was diagnosed, he has primarily taken medications for Parkinson’s.  He is currently up to about 20 pills per day.  Of these 14 are specifically for Parkinson’s, namely Carbidopa (Sinemet) and Ropinirole.  Various other ones help with the side effects, etc.  But about two years ago, the doctor encouraged him to look into Deep Brain Stimulation for Parkinson’s.  Dad resisted at first, but the doctor encouraged him again a few months ago.

The procedure for Deep Brain Stimulation for Parkinson’s is described well on WebMD here.  As you can see from the picture, they put an electrode into your brain.  It is connected to a “pulse generator” which is placed under the skin near the collar bone.  This is then programmed to help especially with the involuntary movements and usually allows patients to cut down on medication too.

The first step was to meet with the surgeon.  Dad had this consultation two months ago.  Not only did he confirm that dad was a good candidate, but it put his mind at ease.  He explained that Deep Brain Stimulation is something that has been done for years.  Dad’s surgeon (Doctor Eskandar at Mass General Hospital in Boston, MA) has done this surgery hundreds of times for many years, now.  It obviously still has real risks, but that made our whole family feel better.  They set the surgery for Thursday, August 15, 2013.

DadMGHOn Wednesday, August 14, my wife and I flew up from Charlotte to Boston to be with dad.  We got a rental car, checked into our hotel and took the shuttle service to the hospital.  It was the day before and dad needed an MRI.  After the MRI, he got admitted and we spent the day at his room.  He was able to eat until midnight.  My mom, sister, and wife all stayed with him until it was time for him to rest for the night.

On Thursday, we got to the hospital at 7:30 AM but dad was not in his room.  The nurses were kind enough to call down to the pre-operation room and they let us visit him there.  Interestingly, they made us put on “bunny suits” to make our way to see him.  My mom and sister are shown here in their suits.  We could not help but wonder if this was really necessary or if they just wanted to laugh at us as we walked to my dad’s room.  It was worth it.  We got to spend an hour or so with dad before they brought him to the surgery room.

BunnySuits

Mass General has a great way of keeping family members updated during surgery.  They told us dad went into the surgery room around 10:00 AM.  He went through prep for an about an hour or two.  Dad explains that it was during this time that they clamped his head down so that it would not move.  Then, the actual surgery took a couple hours.  Not too long after, dad was back in his room by late afternoon.

Dad was a little emotional at first when he got back to his room.  This is understandable, because he was awake during the surgery prep and surgery itself.  Also, his meds make him a little extra emotional.  Of course, dad has always been an emotional person by nature.  In fact, he’s passed that on to me.  I’m always the first one to cry and my wife tends to make fun of me because of it.  No laughing!  Us Creed men are emotional sometimes.  We can’t help it!  Right dad?!?

FamilyHospitalThat evening we all were with dad at the hospital.  To everyone else he is known as “Papa”.  But to me, he is just dad.

You can see the entire family around his bed here.  You might notice that they had to shave most of his hair off (obviously).  Amazingly, my dad is 68 years old and his hair started growing back the very next day.  (I think his hair is thicker than mine.)

At this point, the electrode is in.  But dad needs to go back in a few weeks to have the “pulse generator” (as shown in the picture above) put in.  Even then, we won’t see the benefits of the surgery.  It will be weeks later that it actually gets turned on and programmed.

Dad actually went home on Friday, the day after the surgery.  On Saturday, he felt well enough to spend the day outside for a cookout with the whole family.  You can see him below with his spiffy new hat that he’ll be wearing while his hair continues to grow in.

Family CookoutWe went to breakfast together on Sunday morning before my wife and I flew home.  He looked great and feels good overall.  He is still on the same amount of medication as before but did not need to take anything new because of the surgery.  In the weeks ahead, we hope he can come off a lot of the medications he is taking now for Parkinson’s.

By the way, special thanks to our life-long friend of the family Debi Kent for taking the family cookout picture.  She’s part of the family too, but someone needed to take the picture.

Thanks also to my best friend Erik Easler who came into Boston to sit with me at Mass General Hospital the entire time dad was in surgery.  He (and all Easlers) are part of our family, too.  Unfortunately, Erik had been sick so he was not able to visit dad in his room, but he sent this special message below to dad to congratulate him on his successful surgery.

Erik Easler

All our family and friends are very appreciative to the excellent staff at the hospital for treating our father so well and performing this surgery.  The facility was great and the nurses were top notch.  Special thanks to Doctor Eskandar and his entire staff.

If you’d like to read more and see more pictures, you can read my sister’s account of what happened on Wednesday, Thursday, Friday, and Saturday.

Blog Every Day!

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I don’t think anyone reads this blog any more.  If you do, please prove me wrong.  Leave a comment below.

But every blog needs to start somewhere.  A dead blog like this one needs to start OVER somewhere.

So I’m starting over.  Again.

I know I’ve said this many times.  But this time may actually be different.  After 7 months of working at a Web Marketing Agency as the Director of Client Services, I’ve got a lot of renewed ideas.  One of them is this…

Blog Every Day!

It is my new words to live by and starting this week, I’m doing it.

In fact, my wife and I are working on a new photo that will be displayed prominently in my office.  It will demonstrate exactly how strongly I feel (or at least want to feel) about blogging.  I’ll show you it soon.  I think you’ll like it.  Then again, I don’t think anyone is reading this…  except my mom.  Hi MOM!

So my plan is to “Blog Every Day”.  I will be posting my marketing insights on www.TheJungleMap.com and will be posting regularly to my e-commerce blogs and even guest posting on other blogs.  But this blog will be for quick, random personal thoughts, especially when I have nothing important to say.