Marie's Journey with DBS

I'm home now.

2009-04-30T09:00:00.000-07:00

I'm so glad that I didn't not know exactly what was going to be done to my body before I went in for the 2nd surgery. I may not have gone in! The doc kept saying things like "if you want to back out, it's not to late" but then would follow with an "but you'd be an idiot if you did" comment. That's the kind of personality the neurosurgeon had. He gave it to me straight. The first procedure went so well that I was falsely assuming round two would be just like the first one. I now have 3 new incisions on my head! That makes a total of four, plus the 2 new ones on my chest. And yes, it all hurts. Tylenol is now my best friend.

For my Parkie friends, I only had 2 leads put in. They were placed in my G.P.I.

Home

2009-04-29T20:29:00.000-07:00

Hey everyone! Marie is home! She has a big headache right now--gee I wonder why???
Surgery went well, and she is already healing, feel free to bake, cook or bring over some yummy food...Anything you do will be helpful....

Second Surgery is today

2009-04-27T07:10:00.000-07:00

Update 6:30 PM -- Just spoke to Al, Marie is out of surgery, in recovery and going to her room soon, don't know how long she will be in hospital, Dr's say she will be sore, very sore. Will update later
Today is Marie's second surgery.
The doctors are implanting two more things (its too early in the morning for me to be technical) and the pacemaker devices in her chest. She should be out of surgery later this afternoon. She will need some help again when she gets home. Thanks to everyone who is supporting the family during this healing period. Oh and don't forget, if you visit Marie in the hospital or at home, she has a big sweet tooth and loves chocolate, and other goodies.
Mary

Deep Brain Stimulation for Dystonia Effective Long Term

2009-04-24T07:45:00.000-07:00

Very encouraging news about DBS and dystonia!

April 24, 2009 — An implanted deep-brain-stimulation device is a safe and effective treatment for primary generalized dystonia, a new long-term study suggests. The work, published in the April issue of the Archives of Neurology, followed patients for at least 2 years after surgery, and the results are promising. "

View complete story here: http://www.medscape.com/viewarticle/701877

Message to friend in Telugu

2009-04-22T07:11:00.000-07:00

హే సుజని!
యౌర్ లాంగ్వేజ్ ఇస్ ఆన్ మై బ్లాగ్! ఇస్న్'త థిస్ అ గ్రేట్ ఫెఅతురే? ఎనీ అఫ్ మై ఎంత్రీస్ కాన్ బె త్రన్స్లతెద్. టెల్ యౌర్ పరెంట్'సస తాత థెయ్ కాన్ రీడ్ ఇట్ తూ! ఆల్సో, ప్లీజ్ టెల్ తెం తనక్ యు వేరి ముచ్ ఫర్ ది యోగ డ్వ్డ్. వెన్ అరె థెయ్ కింగ్ తో విసిత్? ఐ కాన్'త వెయిట్ తో మీట్ తెం!
యౌర్ ఫ్రెండ్ ఫర్ లైఫ్,
మరీ రోహ్నేర్

2009-04-21T23:10:00.000-07:00

Message in Malayalam for a friend

2009-04-21T20:31:00.000-07:00

ഹേ പ്രബ്!
ലുക്ക് അറ്റ്‌ ദിസ് ഫീടുരെ ഐ ഫൌണ്ട്!
സൊ വ്തെന്‍ ആരെ യു ഗോഇന്ഗ് ടോ ലുക്ക് ഇന്തോ ദ്ബ്സ്? ഡിഡ് ഐ ടെല്‍ യു ദാറ്റ് മൈ സുര്‍ജോന്‍ കാന്‍ കാന്‍ സീ non നോണ്‍ കൈസര്‍ പടിഎന്റ്റ്'സ ആസ് വെല്‍?

So hot outside I went topless yesterday!!

2009-04-21T05:58:00.000-07:00

Sorry guys, but it wasn't clothing that came down, it was a rag top! A Ford Mustang convertible fully loaded! For those not in the Bay Area, we are experiencing hotter weather than usual. According to my Science Magnate school student , it's only a 'warming trend' and not a 'heat wave'. What does he know! Hot is hot! And apparently we have one more day of heat left before a cooling trend begins. I can't hang with this extra heat!

For people with Parkinson's, warm is hot, and hot is unbearable. We get overheated just from our medications and our fidgety movements! Hot weather makes us want to hide indoors, in an icebox. So you can imagine what summertime is like for PWP's. Two summer's ago I was convinced I was going thru the change of life. The inflatable pool is definitely getting pulled out from the garage and going up today no matter how much my DH protests!

Brandi and I went topless yesterday ~ in her red 2008 Mustang Convertible. What fun!! We took a short ride to Panera's for lunch. (I highly recommend the tomato-basil bread) The top came down and we hit the highway ~ just one freeway exit so no complaints about it being a Spare the Air day! I pretended I was on a rollar coaster and put my arms up into the air. The kid in me takes over sometimes and of course the camera came out. I don't recommend trying to capture the moment while on the highway with the top down to others who have difficulty with fine motor skills!

HAPPY BIRTHDAY TO ALL THE APRIL BABIES OUT THERE!!! Yesterday was a birthday day for a couple people I know. My brother Mike, who is a grandfather now, celebrated a 40 something birthday yesterday. Happy birthday you grumpy old fart!
My dear friend Brandi celebrated a 30-something birthday yesterday. Doesn't she look fabulous? My Uncle Lou had a 50-something b-day last week. My friend Stacey's b-day was on the 12th. Liz's birthday was on the 3rd. Ken's was on the 8th. Prab's was on the 7th.
HAPPY BIRTHDAY TO ALL OF YOU!! I think there is one more person who had a b-day yesterday but of course I CRS and don't know who I'm forgetting. Happy B-day whoever you are!

Next Surgery Date 4/27/09

2009-04-20T18:38:00.000-07:00

The next phase of my DBS surgery will be on Monday April 27th. Same routine. Nothing to eat or drink past midnight. No PD meds 24 hours before surgery. Be at the hospital in Redwood City by 5:45 AM. Get violated.

This time they will do the other side of my brain, install the battery pack(s) in my chest, and run the connection wires down my neck just under the skin. No, it will not be an inhancement of any sort. I already checked! The furthest in the packs can be placed is only 1 inch below the skin. I already asked! I just hope they have someone in the O.R. who is good with a needle and thread! Metal stitches do nothing for the bustline, especially with tank top weather upon us. I will be looking for boxing gloves if I wake up with staples anywhere near my chest!!

This is me! How did this picture get posted online?

2009-04-20T07:37:00.000-07:00

This was the first ad I saw this morning when I turned my computer on! Too funny! I just love this little guy! This is one of my favorite poses for snap shots. Especially when doing portraits! Anyone who has been on a Marie adventure within the last 6 months can attest to this. And they probably have a similiar shot in their camera ~ if their reflexes were fast enough!

Just kidding everyone. This is not a picture of me but it could be! Especially now that I'm sporting a Dr Heit signature "Friar Tuck" haircut! Or was it Mr. Ivan Bernstein, the P.A. who put me in a headlock before surgery and shaved the top of my head? That part is a bit fuzzy but I think there may be two people now I owe a sock in the arm too! My DH says I look like an old Jewish man now! Lovely. Just the thing I want to hear right after asking for a mirror!

Guess what I want to do when my head heals up?

2009-04-19T08:16:00.000-07:00

Amazing what a couple of nights rest can do. I'm sleeping better than I have in a long time. I am getting REM sleep now and even remembering dreams! But this next part is not a dream. It is a goal.

I plan to return to school and complete my education! Wahoo! I thought I'd never get to that point in my life again, when I would allow myself the luxury of returning to school. I left off more than 15 years ago, just past an AA degree. At the time I couldn't find anything that I wanted to do that warranted the use of my very little free time. I was already working a fulltime job and had been for many years. It was one that required shiftwork, mandatory overtime, and working with negative people in negative situations. Very draining! I was unaware of the early symptoms of PD, which were already taking hold back then. Now I am surrounded by nothing but positive, optimistic, hopeful, encouraging, and brilliant people! And I've got God on my side! So everything is possible!

I'm leaning toward a degree in IT. There are many online classes I can take now. Plus there is a Devry in Fremont is farely close. I need to pick a field that will allow me to work from home. I'm still have children to raise and I still have PD. My disease will continue to play a major role in my life. DBS is a band-aid and not a cure or treatment that stops or permenantly reverses the effects of PD. I need to plan for the future. I have to think ahead . I want to help my family as much as I can for as long as I can. There are many scholarships available for non-traditional students (over 25, married, returning, with a disability, etc) that I can tap into.

Most of my PD friends have advanced degrees or titles that go next to their names. I took an unofficial survey (a show of hands of those present) during meetings at 3 different Parkinson's support groups I go to, roughly 75% of those in attendance were engineers of some sort. There were several in the science and education fields with with a Phd. Also a lawyer, a nurse, chemist, research scientist, special education instructor, a retired military general, etc. All intelligent folks! Just about everyone in the Young Onset support group that meets at Stanford is an engineer or scientist or educator of some sort. I keep trying to figure out how I fit in with this elite group. What makes me so special? I don't possess a title or graduate degree. At least not yet!

I have a new understanding of the "Footprints in the Sand" Poem. Thank you lord for carrying me! And for allowing me to dream!!

My big boy and his Baritone/Euphonium at Open House

2009-04-18T19:30:00.000-07:00

Listen carefully and you can hear the baritone's solo.... (no you can"t, I didn't upload it right)

Glenmore Easter Bunny and Me

2009-04-18T19:09:00.000-07:00

Marie and the Easter Bunny, Saturday morning before Easter.

Gotta love the E-Bunny! Who loves him more than me? Reese's Peanut Butter eggs are the bomb! Forget about those little peepers!

I'm gonna post some pleasant looking photos before THE GORE

2009-04-18T19:03:00.000-07:00

Don't freak everyone, my hair hasn't miraculously grown back over night. I just thought I would share some pre-surgery photos before I show off my scar. I'm not afraid to show it either. But you might not want to look at it if you are squeamish at all.

Angel, Marie, and Heaven

2009-04-18T18:53:00.000-07:00

One down, one to go!

2009-04-18T16:04:00.000-07:00

I'm home. I've gotten a good night's sleep, ate a few meals, and got caught up with the kids. Thank goodness it is still spring break . No alarms clocks to answer to right now. Good time to have first procedure done! I'm feeling pretty good considering I recently had a hole drilled into my head and a piece of my skull permanently removed. My neurosurgeon is Gary Heit. He's brilliant alright but he is also a sadomasochist! I'm starting to remember some things from surgery now that the sedatives have left my body. And I think I owe him a sock in the arm! Maybe two!

Some things to consider for the next surgery:
(Note: these are not in the order of importance rather the order of humor. If my Granny was still alive she'd get a kick out of the first one!)

1) Insist on a pair of bottoms to go with the open back hospital gown! - The early morning nurse promptly relieved me of all my clothing as soon as I got to pre-opt, then forced me into a totally useless garment referred to as a hospital gown,and issued me a pair of 'non skid' socks. Nothing else! No bottoms or undies. Nothing like having to lift your legs in front of the male medical staff during surgery with no panties on! And I thought one lost all dignity during child birth! Not so. At least the maternity floors are staffed primarily with women.

2) Bring my own food! And hide it in my blankets!! There is no kitchen at Redwood City Kaiser. All meals are pre-ordered from some off site location the day before. Chances are the meal that is served wont be something I would have picked out myself. Not likely to get something I will want to eat. If oatmeal is served for breakfast it will not come with raisins or brown sugar. Come on, who eats oatmeal without brown sugar?!?! They couldn't even rustle up some cinnamon for flavor! Better off bringing some instant oatmeal from home and asking for hot water and a cup. Besides there isn't a lick of food to be found near the recovery room area. I know. I asked! I asked everyone who entered the room where I could get some food. The surgeon said there was a good Thai place across the street... I guess Al's truck must have been out of gas or something. I didn't get a regular meal until the next evening, after I'd been home half a day!

3) Don't assume there will be something good to eat when I get home from the hospital like I did this time. Just because my significant other can cook, doesn't mean that he will want to or will have the energy to. Take matters into my own hands and order it myself! Either that or stop at Trader Joe's on the way home from the hospital, before hitting a drug store for Tylenol.

4) Have the Wii reconnected to a different TV located in another room of the house instead of the living room. Getting some rest isn't conducive with little ones' wanting to play video games in the same room!

5) Don't let staff dictate how or when to take meds or let the pharmacy decide when to order re-fills!! Trust my own instincts. Be aggressive if I have too! PD symptoms vary from patient to patient. Nobody knows my disease better than me or my family!

Today is surgery day

2009-04-15T08:39:00.000-07:00

10:52 PM just got back from hospital, Marie was sleeping had some pain meds in IV.
8:54 PM Talked to Al, Marie is doing well, might go home tomorrow, will need lots of people to help out and keep her from doing things she is not supposed to do-- If you are reading this-- Can you help out for a few hours?
4:50 PM Out of surgery, just sent me an e-mail and a photo of her post op-- "flippin the bird" I guess she is well enough to have a sense of humor. will update later
8:40 am Got an e-mail from Marie this morning during pre op, her husband and his friend Rad are there with her keeping her company and making her laugh, will check in later

What is Young Onset Parkinson's Disease?

2009-04-12T21:53:00.000-07:00

What is Young Onset Parkinson's Disease?
When someone who is 21-40 years old receives a diagnosis of Parkinson’s disease it is referred to as "young onset" Parkinson's disease. Although most symptoms are the same at whatever age PD develops, managing the disease can be particularly challenging for a younger person and the person’s family – medically, psychologically and socially.
In general, young people tend to have a smoother course of the illness. Overall, the rate of the disease’s progression is usually much slower in younger than older people, which may be due in part to the fact that younger people tend to have fewer general health problems. Associated problems, such as memory loss, confusion and balance difficulties, also tend to be less frequent in young people with the disease. However, young people often have more involuntary movement problems due to the most commonly prescribed PD medication, levodopa. For this reason, young onset patients are usually treated initially with alternatives to levodopa.

What is Parkinson's Disease?
Parkinson's disease is a chronic progressive neurological disease that affects a small area of nerve cells (neurons) in an area of the brain known as the substantia nigra. These cells normally produce dopamine, a chemical (neurotransmitter) that transmits signals between areas in the brain that, when working normally, coordinate smooth and balanced muscle movement. It is now known that there are other areas of the brain that can be involved which results in non-motor symptoms. Parkinson's disease causes these nerve cells to die, and as a result, body movements and other functions are affected. We do not yet know what causes these cells to die. "Parkinsonism" is a term that is often used interchangeably with Parkinson's disease. Medically, Parkinsonism refers to any condition that causes symptoms similar to Parkinson's disease.

More info available on APDA's website: http://www.youngparkinsons.org/educationMainAbout.php#commonQuestions

New haircut for Marie

2009-04-12T21:03:00.000-07:00

Tonight we gave Marie a super short haircut in preparation for her surgery on Wednesday. We left her purple streak in the back as a reminder of her rebellious streak!!! Ha Ha You go Rocker chick!!!

Oh and don't forget, if you want to lend a hand in any way to the family please contact me at Mbess729@yahoo.com

Just what is Deep Brain Stimulation?

2009-04-06T17:11:00.000-07:00

Deep brain stimulation as defined by Wikipedia:
In neurotechnology, deep brain stimulation (DBS) is a surgical treatment involving the implantation of a medical device called a brain pacemaker, which sends electrical impulses to specific parts of the brain. DBS in select brain regions has provided remarkable therapeutic benefits for otherwise treatment-resistant movement and affective disorders such as chronic pain, Parkinson’s disease, tremor and dystonia.[1] Despite the long history of DBS,[2] its underlying principles and mechanisms are still not clear. DBS directly changes brain activity in a controlled manner, its effects are reversible (unlike those of lesioning techniques) and is one of only a few neurosurgical methods that allows blinded studies.
The Food and Drug Administration (FDA) approved DBS as a treatment for essential tremor in 1997, for Parkinson's disease in 2002,[3] and dystonia in 2003.[4] DBS is also routinely used to treat chronic pain and has been used to treat various affective disorders, including major depression. While DBS has proven helpful for some patients, there is potential for serious complications and side effects.

[edit] Parkinson's disease
Parkinson's disease (also known as paralysis agitans) is a neurodegenerative disease whose primary symptoms are tremor, rigidity, bradykinesia and postural instability.[10] DBS does not cure Parkinson's, but it can help manage some of its symptoms and subsequently improve the patient’s quality of life.[11] At present, the procedure is used only for patients whose symptoms cannot be adequately controlled with medications, or whose medications have severe side effects.[5] Its direct effect on the physiology of brain cells and neurotransmitters is currently debated, but by sending high frequency electrical impulses into specific areas of the brain it can mitigate symptoms[12] and/or directly diminish the side effects induced by Parkinsonian medications,[13] allowing a decrease in medications, or making a medication regimen more tolerable.
There are a few sites in the brain that can be targeted to achieve differing results, so each patient must be assessed individually, and a site will be chosen based on their needs. Traditionally, the two most common sites are the subthalamic nucleus (STN) and the globus pallidus interna (GPi), but other sites, such as the caudal zona incerta and the pallidofugal fibers medial to the STN, are being evaluated and showing promise.[14]

Components and placement
The deep brain stimulation system consists of three components: the implanted pulse generator (IPG), the lead, and the extension. The IPG is a battery-powered neurostimulator encased in a titanium housing, which sends electrical pulses to the brain to interfere with neural activity at the target site. The lead is a coiled wire insulated in polyurethane with four platinum iridium electrodes and is placed in one of three areas of the brain. The lead is connected to the IPG by the extension, an insulated wire that runs from the head, down the side of the neck, behind the ear to the IPG, which is placed subcutaneously below the clavicle or in some cases, the abdomen.[5] The IPG can be calibrated by a neurologist, nurse or trained technician to optimize symptom suppression and control side effects.[6]
DBS leads are placed in the brain according to the type of symptoms to be addressed. For non-Parkinsonian essential tremor the lead is placed in the ventrointermedial nucleus (VIM) of the thalamus. For dystonia and symptoms associated with Parkinson's disease (rigidity, bradykinesia/akinesia and tremor), the lead may be placed in either the globus pallidus or subthalamic nucleus.[7]
All three components are surgically implanted inside the body. Under local anesthesia, a hole about 14 mm in diameter is drilled in the skull and the electrode is inserted, with feedback from the patient for optimal placement. The installation of the IPG and lead occurs under general anesthesia.[8] The right side of the brain is stimulated to address symptoms on the left side of the body and vice versa.

What can you Do?

2009-04-05T09:09:00.000-07:00

Hello,
My name is Mary. I have been Marie's friend since my daughter Cierra and her son Bryce were in Kindergarten.
We have a lot in common as we are both strong, determined, independent and we also have a very difficult time asking for help when we need it. Just ask my husband!!!

Two years ago both of my parents underwent cancer treatment. Our family and friends came through and brought us food, helped out with driving, sitting with my Mom at the hospital etc. I don't know that I ever properly thanked everyone that helped out but I do know that I would like to help pay it forward. So I am asking you if you, are reading this to help out Marie and her family after the surgeries.

We all have many gifts in our hearts to share so don't be afraid to lend a hand. I hope to have some type of schedule know that there will always be someone to bring over dinner, food, drive, sit, help Allen, the boys etc...Please contact me if you have any ideas or questions. You can contact me directly at Mbess729@yahoo.com.

Why am I so happy?

2009-04-05T03:40:00.000-07:00

(this should have posted a few days ago)
Last week I did something I haven't done in a long time. I baked a cake, from scratch. Two of them in fact. It made my family happy. I gave one to a friend. It made her happy also. A few days later I made more for my church.
Hmm... not sure this is a common emotion right now but I feel really good emotionally. I am relieved. Happy. At peace. It is one week before D-day. DBS day that is. In just 7 days I will be trying on of those snazzy metal 'halos' I've heard so much about. 7 more days of driving privileges. 7 more days of hair! Looking foreword to the photos after that is done! 7 freakin' days left of unscarred skin! Solomente 7! Adios mio!
Shouldn't I be nervous? Scared? Down on my knees praying hard? What gives? Why am I thinking clearer than I have in a long time? Why am I suddenly able to work on projects that were insurmountable the month before? Could I be experiencing the "honeymoon effect" of a new treatment, before I've even received it? Need to look into this more...

DBS Surgery Dates

2009-04-04T12:26:00.001-07:00

4/15/09 Wednesday 7:20 AM
Check-in is at 5:45 am. About an 8-10 hour procedure.

4/28/09 Tueseday 7:40 am
Check-in is at 5:45 am. About a 10-12 hour procedure.

Neurosurgeon Dr. Gary Heit
http://www.permanente.net/homepage/doctor/garyheit/

Kaiser Permanente Health Care (650) 299-2015
1150 Veterans Blvd, Redwood City, CA 94063

It's O.K. to look. It's O.K. to ask.

2009-04-03T06:58:00.000-07:00

I can't believe this happened! A man got on an elevator in a Las Vegas hotel yesterday and never got off. He passed away unnoticed while riding in the hotel's elevator. Many hotel guests entered and exited the elevator not realizing he was dead. The deceased continued to ride up and down, up and down, up and down. When he didn't move forward to exit the elevator when the doors opened others presummed he was ASLEEP. Nobody seemed to notice that he wasn't moving at all. I wonder if anyone bothered with "Hey buddy, are you getting off here?" or "Can I get someone to help you? You've fallen asleep!" Who knows how many casino guests came and went before anyone realized he was dead. Nobody seemed to think it odd to see someone 'stuck' in an elevator. Nobody seemed concerned about this man. Nobody asked.

Why? Because this man was sitting on an electric scooter. A mobility scooter. That scooter signified that he was different from others. Somehow broken. Less than a person. Disabled. Therefore, invisible.

God, please don't let me die in an elevator!