Here is a little something for you to enjoy while I work on my new post about mum’s programming.  My dad is weird, a great guy but a total weirdo as you will be able to tell from the following video taken this fall.

Dad asked if he could write a guest post on Parkinson’s and here it is.  I hope you find it interesting!

One of the interns at the Mayo Clinic had a well-thumbed paperback in his pocket entitled “Guide to Neurology.”  We joked about how confidence-building that was and that only “Brain Surgery for Dummies” would have been a more reassuring book for him to have.  For awhile I have been thinking about how to explain Parkinson’s disease and the strategies  used to combat it simply so a dummy like me could understand it.  Here goes:

The brain is an incredible organ.  Your brain fires hundreds of signals without you being aware that messages are sent to your muscles each time you stand, walk or take a sip of coffee. The brain produces dopamine, a substance that essentially amplifies the signal to get it through.  In people with Parkinson’s, the cells that produce the dopamine are dying.  In most cases, the cause is unknown.  Think of the brain as an AM radio station sending messages; if the signal isn’t strong enough then static or other noise distorts or blocks it from getting through.  When this happens the muscles hear the wrong thing, causing tremors or spasms or no signals at all, causing “freezing,” something that has been more common for Jan.

In the 1950’s two artificial forms of dopamine were developed and remain the foundation for the treatment of Parkinson’s.  In the early stages of the disease, one takes Sinemet three times a day and everything is fine but after about five years, something strange starts to happen.  The brain figures out that something foreign is affecting it and blocks it, first sporadically, then on a more and more regular basis.  Virtually all the pharmaceutical advances in the last fifty years have been to fool the brain into letting the Sinemet in and to prevent the body digesting it until the drug has a chance to get to the brain.  It is like a battle- each of the new drugs help for a while, then the brain figures out how to block them.

Remember the radio?  All the medical emphasis has been to increase the signal’s strength to overcome the static.  But what if you could decrease the static?  Turns out that just about all the noise or static that impedes the signals getting through come from a pea-sized area on each side of the brain.  In the 1990’s they did surgery to nuke (cauterize, really) the part of the brain that created the static.  Michael J. Fox had this surgery.  Again, it worked for about five years, until static came from other parts of the brain.

So what if you fought noise with noise?  Imagine being in a crowded restaurant.  You can’t hear your dining partner across the table so you stand on your chair and scream “shut up” at the top of your lungs.  I guarantee that the place will silence instantly.  However, in a few minutes (possibly even before you are thrown out) the ambient noise will return.  The surgery Jan had was to put an electrode into the middle of that pea-sized area on each side of her brain to fight noise with noise about 300 times a minute for the next five years, until she needs to have the battery replaced.

Jan was awake for the eight and a half hours of the surgery.   One of the devises that the surgical team has listens to the static as each probe is implanted.   She said that when the probe hit the pea-target, the static was so loud that she thought it had started to rain heavily.  They turned on the electrode, and the sound stopped.

Jan’s battery-powered brain hasn’t been turned on for good yet, but she is already having remarkable results. She had the surgery Wednesday, came home Thursday, took it easy Friday, but then went out to lunch Saturday, did a few errands and then saw the new George Clooney movie.   All of this improvement is called a honeymoon effect—Jan is getting benefits similar to the earlier cauterization surgery that will wear off over the next couple of days and weeks.

Chihuly sculptures at the Mayo Clinic.

I can’t close without some comments about the Mayo Clinic.  They have been on Newsweek’s “Ten Best Hospitals” list since they started writing one.  They claim to be the largest integrated medical facility in the world and I for one believe it.  They have 50,000 employees in Rochester, Minnesota, a town with a population of 85,000 two hours south of the Middle of Nowhere.  They have more important art (Miro, Chihuly) than many museums.  The day of Jan’s surgery, hers was one of 118 surgeries at St Marys, one of the two hospitals that are part of the Mayo Clinic.   St. Marys has four nurses whose job is to keep families informed while their loved ones are in surgery.  I got six status calls from them during the day.  Dr. Kendall Lee, the god who performed Jan’s surgery, met with me after the surgery and he was beaming, just radiating.  He used the word “terrific” four times… and he has done this surgery about four hundred times before, he was that pleased.  Dr. Lee, like everyone at Mayo, is on salary.  He would have been paid the same for playing golf that day as he was for making an incredible improvement in Jan’s quality of life.

Jan’s battery-powered brain will be programmed in a few weeks.  Each implant actually has four electrodes from which the technicians can select for the best result.  They also will experiment with power levels and frequencies for the best result.  Then we will see how brain surgery for dummies was really smart.

Thanks, Jordie, for letting me add to your blog.

Today I decided to wear my lucky sweater.  It is not especially lucky really, I just like it a lot and choose to wear it on special days- being the history nerd that I am I wore it on election day and primary day, and I am wearing it today.

Generally I don’t hold a lot of stock in lucky things- I don’t have or really believe in a lucky number and never have had lucky socks or a rabbit foot but I do believe that an outfit can affect the way I feel- I always feel good when I wear my turquoise shoes and the same thing goes for my pink cardigan.  A word about the cardigan, clearly I love it but I think that it is one of those things that could be dangerously close to ugly for some people so when I wear it I have to wear it with confidence.

Last night I slept in two-hour increments but am still feeling pretty good today.  I have already received three texts from Dad telling me that mum was in pre-op where they will attach the “head cage” and then take the internal MRI and that an intern came in with a “guide to neurology” in his pocket which was pretty funny.

Thank you for thinking of us today and all your warm wishes we are all touched.

This morning I was up at five to see my parents off to the Mayo Clinic.  Tomorrow is the big day.

I haven’t even begun to process how things can be and will be different when Mum returns.  She won’t have the implants programmed for two weeks after the surgery but many people experience a honeymoon period after the surgery where they can have reduced to no Parkinson’s symptoms.  The thought of this is really unreal.  I know things will be different but the question is what and how much.  Mom has decided that she will respond well but will be happy if she is only 30% improved.  The possibilities are boundless, she may be able to: hold her head up, sleep better,  no longer be shutdown or slur her speech and may someday drive again.  Her quality of life will be beyond improved.

Not bad for 5 am?

As of yet I haven’t decided what I hope she gets out of the surgery if I even get a say.  What I think I am hoping for is for my mom to be able to live her life how she wants to and not have the disease get in the way.  Those of you that know my mumsy know that she is really the best- she is the kindest, sweetest, funniest little thing ever.  For years she has wanted a new brain and soon she will have one.

I have been feeling pretty good all things considered but know that tomorrow will be tough.  Dad will be texting with updates throughout the day with updates but it is all really weird.  Please keep us in your thoughts.

Thanksgiving is probably my favorite holiday.  I like getting together with the fam and cooking and eating and drinking.  This year was no different.  I had a lovely afternoon dinner with the parents and then we went to see Fantastic Mr. Fox which I thought was just wonderful.

One thing that is different this year is we already decorated for Christmas.  Mum goes in for her surgery this week and she won’t be able to lift more than five pounds for about two weeks so we spent a lot of the weekend decorating.  Mum and I put out her fabulous Santa collection (which someday my sister and I will fight over) as well as all the other decorations and the house looks great.  Because of this I am beginning to feel the holiday spirit a lot earlier this year, some years it doesn’t even hit me until Christmas Eve.

One of the things that I love about the holiday season is all of the cheesy movies on Lifetime.  So far I have watched- Single Santa Seeking Mrs. Claus, Eve’s Christmas, Secret Santa, and Road to Christmas.  The general formula to these movies is: semi-big name star (Steven Guttenberg, Cheryl Ladd, Jennie Garth, and Jennifer Grey, respectively) get in some trouble magical or otherwise and no longer believe in Christmas then fall in love and regain their belief in Santa and all becomes right in the world.  I generally have these movies on while I do other things like picking up the house, laundry, ironing so I am okay with this indulgence.

My favorite Christmas movie of ALL times is White Christmas which I will be setting a TiVo wishlist for later this evening and all will be right with the world.  If only I could make an anti-wishlist…then I would put A Christmas Story on it.  I HATE that movie.  I know I am going to get a lot of flak for this but I can handle it.  For some reason people love it and I think it is the absolute worst movie…ever.  Every year TNT or TBS runs it back-to-back-to-back for   on Christmas Eve and inevitably my sister makes me watch it and it is pure hell.

This is going to be a pretty tough week with the parents heading to Mayo early Tuesday morning and mum’s surgery on Wednesday so it will be nice having the house cheery!

I was trying to come up with a witty title for this one but I decide nothing could really top the truth.

In true fashion the night before my first day at a new job was an eventful one.  It started with me deciding to sleep in the guestroom because a mouse has decided to set up shop in a wall of my room and is not at all considerate about the fact that I had to get up early.  After I had trooped up two flight of stairs with my pillow, comforter, cell phone and Buttons I settled down on the world’s softest mattress.  How soft is it?  I was practically enveloped by it.

I finally got to sleep around midnight but was awakened an hour or so later by my cat, Declan, purring and rubbing his head into my face.  Cute until all of a sudden he coughed and threw up right by my pillow.  And let me tell you it was lucky he coughed and I had the presence of mind to shove him out of the way or he would have thrown up on my left cheek.  He was so close to me that the vomit was actually on the edge of my pillow case.

I know, I know… this is gross and you don’t want to read about it but it actually happened to me, people!  And let me tell you, I wish I was exaggerating.  After a rocky night school today was a breeze but I am already looking forward to Thanksgiving vacation!

11 days to go.

mark your calendar: Wednesday December 2nd mum will undergo Deep Brain Stimulation surgery at the Mayo Clinic.

Thoughts, prayers, good vibes, and African drumming have all been promised and are appreciated- keep ‘em coming!

More to follow but I actually have to get up and go to work tomorrow.  Yep, I’m employed.  I have a job as an assistant at a local charter school and start tomorrow just in time for Thanksgiving vacation.

When moving to a new city there are things you have to figure out- the best grocery store, where to get the cheapest gas, where the best breakfast is- all of this on top of having to learn your way around which you expect because it is a new city with new places, right?

Well… what I didn’t think about was that I would have to reset my car radio stations.  Yuck!   Especially when you are as anal as I am and they have to go in order from lowest to highest (you know you are not surprised by this).  And before I can even do that I have to find new radio stations!   How did I even fill all ten of my presets before?

Normally when I am in the car I listen to NPR or my iPod if it is a long trip but neither of these things really work for middle of the day errands.  Lately when I am in the car I find myself searching for new stations and adding those to my dial and getting rid of the old ones.  At first I was hesitant to add the new stations but now I am starting to find a few good ones.

The most promising so far is a station that played a block of live U2 followed by Snow Patrol and the Bodeans(!) so I have been able to overlook the unexplained resurgence of Uncle Kracker on their airwaves.  The second runner-up is the NPR music station which is cool in theory but in reality a lot of the music is just too indie for me.  Seeing as my social life is a little quiet these days I think it is time to load the rest of my music library onto my iPod and find a good station for my iTrip.  I like my playlists better anyway.

 

Mum and I bought Rigby a costume for Halloween.

I’m not too sure she liked it.

Rigby the lobster

She did get her revenge though.

yuck!

And a happy Halloween to everyone.   This year we have big plans: we are going to see Michael Jackson’s This is It and then hide from trick or treaters on the lower level.

notice how we are holding hands... cute, right?

I get really cold in the winter, I mean really cold.  So obviously I am a bit nervous about the rapidly approaching winter in Minnesota where the average high in January 13  (it’s 36 in Boston).

Today Dad and I discovered a fabulous new store, Gandor Mountain, where I tried on some candidates for my new winter hat.  Any thoughts?

Coyote?

Pink?

Grey?