Shake, Rattle and Roll

Colonoscopy’s Unexpected Gift

My doctor says “You are at the age where you need to be concerned about your colon care. You need to have a colonoscopy.” I grimace. “If the first colonoscopy is clear, then you won’t have to have another one for 10 years when you are 68,” she says reassuringly. “With Parkinson’s, I don’t expect to be around in 10 years,” I state matter-of-factly. This time, she grimaces.

By the time I return home, the colonoscopy office left a voice mail indicating they were eager to schedule the procedure. I’m thinking they must not have many patients who willingly call for an appointment. I delay returning the call. The scheduler is persistent and calls me again, even though I did not return her first call.

The scheduler suggests several dates, and my responses are: “Nope, I’ll be in New York City.” “No, that date won’t work as I have a dance performance.” “No, I’m flying to Kansas City for my twin nephews’ high school graduation.” Exasperated, she says, “OK, you suggest some convenient dates.” I come up with the Tuesday after Mother’s Day.

Everyone who has had a colonoscopy tells me the same thing. “It doesn’t hurt. You’re knocked out. Don’t worry about it.” Finally, the truth comes out about the preparations being the most difficult part of the entire procedure. The medical staff also reassures me that “the patients say that the prep is the most difficult part of the procedure,” as the staff knows better than getting anywhere near a colonoscope.

I was scared of the preparation, more than the procedure itself. For the procedure on Tuesday, the preparation to get your system cleaned out is the following:

• Last meal of breakfast on Monday with no real food until lunch on Tuesday

• No medication from noon on Monday otherwise the meds might clog the colonoscope

• Only clear liquids (and this does not include California Chardonnay) from noon on Monday until 6 AM on Tuesday

 • No liquids of any kind after 6 AM on Tuesday

• At 6 PM on Monday, begin downing at the rate of one glass every 10 minutes, nine glasses filled with 8-ounces of an atomic-powered laxative; totaling 72 ounces

• Set the alarm for 4 AM on Tuesday and drink four more 8-ounce glasses, totaling 32 ounces, before 6 AM

• Bowel movements start about an hour after the first glass and last for 6-8 hours

• You may feel bloated, chilled or nauseated.

• “If you start vomiting, stop drinking the solution for 30 minutes then restart

• Warnings that if you don’t comply with any of the above, then the procedure may need to be rescheduled!

Being a compliant patient, I follow all the above. In fact, it is noted in my chart that “the quality of the prep was excellent.” Being compliant results in me feeling like I have food poisoning, I am dehydrated, and I get very little sleep that night. Also without Parkinson’s meds for nearly 24 hours, I am slow and shaky.

I wake at 4 AM on Tuesday to discover that it’s a cold rainy day in metro Denver. It’s a good day to stay inside and have a colonoscopy, I tell myself. I discover that Cindy, the Medtronic representative for deep brain stimulation, is at the procedure to zero out the stimulator before the colonoscopy and then turn it back to the correct settings afterward. Cindy arrives at the hospital right on time at 7:30 AM after driving 50 miles in rush-hour traffic on rain-soaked freeways.

Right before I change into the hospital night gown for the procedure, Cindy turns off the stimulator by putting the control device on top of my chest. The pre-op staff look inquisitive, and we hear mumblings of "what are they doing?". We say that I have an implanted deep brain stimulator for Parkinson’s Disease, that it’s like a pacemaker to the brain. They scratch their heads as though we are speaking a foreign language.

The colonscopy procedure itself goes "without incident" I am told. Nobody wants an incident.

I am in a sedated fog when Cindy returns after the procedure to turn on the stimulator to the same settings of my last programming session of March 4. I think these settings are close to optimal for me right now.

When I visited New York a couple of weeks ago, the security checks must have inadvertently triggered a change in the settings. Since New York, my voice has been devastated (see Giving a Voice to Parkinson's).

However, when I am discharged from the hospital after the colonoscopy, I notice that my former strong voice returns. With a return to the settings of March 4, getting my voice back is colonoscopy’s unexpected gift.

By the way, the results of the colonoscopy indicated no polyps and no cancer. Yipee!!

Related Link:

Colon Test Not Quite Fantanstic Voyage by Linwood Barclay

May Milestones

“My path has not been determined. I shall have more experiences and pass many more milestones.”
Agnetha Faltskog

Significant personal milestones in my adulthood have occurred in May. These dates in May are forever branded in my brain:

May 19, 1972: Obtained my Master’s degree at the University of Wisconsin in Milwaukee

May 23, 1972: Immigrated to Canada

May 29, 1972: Began my career in Windsor, Ontario

May 11, 1974: Got married in Milwaukee, Wisconsin

May 8, 1996: Diagnosed with Parkinson’s Disease in Westminster, Colorado
See The Answer

May 4, 2005: Had Deep Brain Stimulation (DBS) surgery in Sacramento, California
See Uneventful Brain Surgery

May 5, 2006: After a year of programming sessions, the programmers finally admitted that “we can’t help you with this” or as I interpreted it, "this is as good as it gets."
See Get with the Program

May 31, 2006: Ended my career in Denver, Colorado because of Parkinson’s disability
See PD Went to Work

and It’s Not Working

May 14, 2007: Began DBS reprogramming sessions with Dr. Olga
See Get with the Reprogramming

Each event has its own story. But May 4, 2008 being the third anniversary of my DBS surgery, I’d like to reflect on the question that people eventually ask: “Would you have DBS over again?” Up until about a year ago, the answer would have been a definite “no.” In fact, I was the only person that I knew who wouldn’t do it over again. I longed for the positive benefits of DBS. I hated having the DBS system inside me and went to a neurosurgeon and asked for it to be removed. Shocked by my request, he referred me to the local expert on DBS programming, Dr. Olga.

Dr. Olga has a passion and knack for DBS programming. This DBS Wizard doesn't give up on her patients. Her compassion and competence has been inspiring.

Now my answer to the “Would you do it again?” question is “yes” providing a skilled DBS programmer is close at hand.

I look forward to many milestones to come.

Davis Phinney Celebrates His Biggest Victory through DBS

Check out Sports Illustrated's story by Austin Murphy entitled:

Davis Phinney Celebrates His Biggest Win (so far) at:
http://www.sportsillustrated.com/2008/writers/austin_murphy/04/28/phinney/index.html

Related Links:

Phinney hits last step of Parkinson's surgical relief plan
The Associated Press
Published: April 26, 2008
http://www.iht.com/articles/ap/2008/04/25/sports/CYC-Phinney-Surgery.php

Adverse Events after DBS Surgery

Many of us who have had Deep Brain Stimulation (DBS) surgery experience some "adverse effects" (or "trials and tribulations" as my friend, Valerie describes them).

Adverse Events after DBS Surgery
From Viartis
New Research – March 30, 2008
Movement Disorders [2008] 23: 343-349 (A Videnovic, L Verhagen Metman)

DBS is a surgical method of treating Parkinson's Disease that uses electrodes implanted into the brain. Traditionally, the two most common sites in the brain used in surgery are the subthalamic nucleus (STN) and the globus pallidus interna (GPi). The authors analysed reports of adverse events from over a thousand patients who had undergone DBS surgery. The most common adverse events were, in order: weight gain, then confusion, then speech difficulties. Neither part of the brain that was used had clearly fewer adverse events than the other. Adverse events related to DBS surgery are common, but the study authors concluded that their true prevalence cannot be accurately determined with current reporting methods.

See complete article at: http://www.mdvu.org/emove/article.asp?ID=1029

The most common adverse events were:

Procedure related events (% of STN/% of GPi):
Mental status/behavior (mostly confusion) 18%/9%
Infection 2%/3%
ICH-symptomatic 2%/4%
Misplaced electrode 2%/2%
Speech disturbance 2%/4%,
Infarction 1%/2%.

Stimulation or progression related events (% of STN/% of GPi):
Weight gain 37%/18%,
Dysarthria (speech disorder) 13%/12%
Eye opening apraxia 11%/0%
Gait ignition failure 0%/17%.

Hardware-related events (Combined % of STN and GPi):
One or more events 9%
Infection 2%
Malfunctioning 1%
Lack of benefit 1%.

Full Abstract:

Deep brain stimulation for Parkinson's disease: prevalence of adverse events and need for standardized reporting.

Videnovic A, Metman LV.
Section of Movement Disorders, Rush University Medical Center, Chicago, Illinois 60612, USA. aleksandar_videnovic@rush.edu

Deep brain stimulation (DBS) has assumed a prominent role in the treatment of Parkinson's disease (PD). In this manuscript, we attempt to estimate the prevalence and categorize adverse events (AEs) of DBS in PD, based on efficacy studies published over the last decade. We conclude that reliable categorization and quantification of AEs based on available data poses many challenges and argue that a standardized scheme for reporting AEs should be created. This would provide a foundation for a meaningful risk/benefit analysis, for comparison of results between centers and, ultimately, for a well informed decision by physicians and patients as to whether surgery should be pursued. 2007 Movement Disorder Society
PMID: 17987644 [PubMed - in process]

Saying No to Goal-Setting

This morning, I chuckled when I discovered my list of Deep Brain Stimulation (DBS) reprogramming goals that I set on May 14, 2007, the day of my first reprogramming session with Dr. Olga.

The only problems with my goal-setting were that I had forgotten that I set them, and I never shared them with Dr. Olga. I was afraid of appearing greedy (which I am). Despite saying that I would be happy with any progress achieved through DBS, programming and reprogramming, I wanted it all. I was worried about appearing OCD (yep – that’s me again).

By not remembering that I had set these goals and by not informing the person who was helping me reach them, I achieved far greater results then anticipated. This truly speaks to the case AGAINST goal-setting. So, here they are:

May 14, 2007--Kate’s Goals for DBS Reprogramming Sessions

• I eventually hope to take less medication, less frequently (e.g., every 4 hours instead of every 3 hours)
and have less “off” periods. This would allow me more freedom when I am outside the home to get home
safely.

• I am hoping that the medication and programming adjustments result in less dyskinesia.

• Less dyskinesia would allow me to safely play my accordion (lighter weight, reedless, no bellows) at my
leisure (no competing in music contests, no public performances).

• I would like to volunteer 3-4 hours a week at University of Colorado Hospital with DBS patients.

• I would like to have more energy (e.g., stay up until 10 or 11 PM and sleep for 8 hours).

• I would like to walk 5 times a week for at least 30-45 minutes.

Less than a year later, my new mantra is “No goals allowed.”

New York Times’ Article Reports That Davis Phinney is Having DBS at Stanford

Take a look at the article in The New York Times by Juliet Macur entitlled, For the Phinney Family, a Dream and a Challenge.

Source:
http://www.nytimes.com/2008/03/26/sports/othersports/26cycling.html?_r=1&scp=1&sq=davis+phinney&st=nyt&oref=slogin

Related Story:
Successful Surgery for Cycling Great Phinney

The Hands of Fate

Take a look at Fate Lends a Helping Hand by Valerie Graham on The Parkinson Alliance's website
(dbs-stn.org) at:

http://www.dbs-stn.org/participate-details.php?ID=12

It’s about our volunteer work in the Parkinson’s and Deep Brain Stimulation community.

Cost of Gasoline: Pricey -- Cost of Hospital Volunteering: Priceless

Click on photo for larger image

Kate Kelsall (left) and Valerie Graham (right), both Parkinson's patients, volunteer as Deep Brain Stimulation (DBS) Patient and Family Liaisons at the University of Colorado Hospital

I was stressin’ over the price of gas when I walked into the hospital yesterday. My preoccupation with rising gas prices was interrupted by a friendly toot-toot of a passing car that had license plates from a neighboring state. Inside the car were the patient and family I was meeting.

For the last six months, Valerie Graham and I have volunteered as a Deep Brain Stimulation (DBS) Patient and Family Liaisons at the University of Colorado Hospital. Between us, we have driven more than 2400 miles visiting with patients and their families, accompanying them to their neurology appointments and hospitalizations. Valerie and I were at the hospital to accompany a DBS patient and his family for his first programming session of the pacemaker to his brain.

My eyes teared when I read yet another thank you note from the patient’s mother. Valerie and I each received two separate thank you notes. When I asked permission from the patient and his mother to print the note, they generously agreed. One of the notes from the patient's parents follows:

March 18, 2008

Dear Kate,

What a special name! Our granddaughter is named Kate. It just goes with special people!

My husband* and I want to thank you for your support of our son* and us. It is truly a gift that we have appreciated so much and certainly will never forget.

Your calm acceptance of your life really came through to us and eased our minds and right away, we could see a good future for our son.*

What a blessing you are!

Sincerely,
Parents* of DBS patient*

*In the letter, first names were used. I substituted patient, son, husband, mother and parents to maintain anonymity.

After the appointment, I reflected on the cost of gas to reach patients and families in this program and experiences that generated a letter such as this. While someone still has to pay to fill the gas tank, the experiences of the DBS patients, families, Valerie and me are priceless.

Related Story:

Writing Makes a Difference
By Kate Kelsall and Sheila Bender

How Many People Are Suitable For DBS Surgery?

I find this unbelieveable. Please forward to your neurologist, movement disorder specialist and neurosurgeon and ask for their reactions.

PARKINSON'S DISEASE NEWS
From Viartis
16th March 2008 - New research

How Many People Are Suitable For DBS Surgery?

Parkinsonism Related Disorders [2007] 13 (8) : 528-531 (Morgante L, Morgante F, Moro E, Epifanio A, Girlanda P, Ragonese P, Antonini A, Barone P, Bonuccelli U, Contarino MF, Capus L, Ceravolo MG, Marconi R, Ceravolo R, D'Amelio M, Savettieri G.)

See complete abstract.

DBS is a surgical method of treating Parkinson's Disease that uses electrodes implanted into the brain. For more information, go to Deep Brain Stimulation. Researchers estimated the percentage of people with Parkinson's Disease that are suitable for subthalamic nucleus (STN) deep brain stimulation (DBS). They used the Core Assessment Program for Surgical Intervention Therapies in PD (CAPSIT-PD), which examines patients in a "practically defined off state" after overnight 12-hour drug withdrawal and again in the on state after their usual morning dose of L-dopa. They found that out of 641 Parkinson's Disease patients only less than 2% fulfilled strict criteria in order to be eligible. When the researchers applied more flexible criteria, the percentage of eligibility increased. Yet the number of those that were eligible was still less than 5%. Most patients - 60% of them - were ineligible because they did not satisfy multiple questionnaire items. Items related to disease severity were responsible for the largest number of those people being excluded from eligibility.

The 3 Hour Leash Morphs into a 24 Hour One

I’ve been reluctant to write about this change in my Parkinson’s self. I was afraid that my good fortune might magically evaporate if I’d put it in writing or say it out loud. But now that this change has “stuck” for 10 days, I must reveal it.

As most of you know, I have been going through the process of reprogramming of the Deep Brain Stimulation system with Dr. Olga. I affectionately see her as a Russian magician. With my last reprogramming session on March 4, 2008, my goal was to change my time between Parkinson’s meds from three hours to four hours. Three hours between Parkinson’s meds and accompanying fluctuations was a tight leash for someone like me who has been trying to lead a productive life. A four hour leash was more manageable, and something I could handle.

But I’m still uncertain what happened at that reprogramming session ten days ago. The three hour leash morphed into a 24 hour leash. I now take my Parkinson’s meds every 24 hours, not every three hours. The results of my reprogramming session far exceeded my expectations. This is the best that I have felt in 12 years since being diagnosed with Parkinson's. The only possible explanation is that Dr. Olga hit the optimal settings for me at this time.

This is what it must feel like not to have Parkinson’s. I had forgotten. I'll take it for as long as it lasts. Thank you, Dr. Olga. I am grateful!

Team Approach Makes UCH One of Nation's Busiest DBS Centers

Check out this article written by UCH Insider about the Deep Brain Stimulation program at the University of Colorado Hospital. Valerie Graham and Kate Kelsall proudly volunteer there as DBS patient and family liaisons.

Thanks,
Kate Kelsall

Download dbs.pdf

The Number of Electrodes Alters the Effect of DBS Surgery

9th January 2008 - New research
from Viartis, Parkinson's Disease News

Neurosurgery [2007] 61 (5 Suppl 2) : 346-355 (Temel Y, Wilbrink P, Duits A, Boon P, Tromp S, Ackermans L, van Kranen-Mastenbroek V, Weber W, Visser-Vandewalle V.)

DBS is a surgical method of greatly reducing Parkinson's Disease symptoms that uses electrodes implanted into the brain. It is still debated to what extent the techniques used affect the outcome of deep brain stimulation (DBS). Identification of the Subthalamic nucleus, which is where the surgery is often completed can be carried out using only one electrode or by using multiple electrodes. Researchers found that the simultaneous implantation of multiple electrodes does not increase the risk of bleeding or any other major intracranial complication. The use of multiple electrodes also resulted in better motor results when compared with patients who underwent DBS that was guided with a single electrode. There were significantly more improvements in patients' tremor and rigidity, and their symptom scores when using multiple electrodes. However, patients treated with multiple electrodes also showed subtle deterioration in their neuropsychological functions, particularly in memory function.

Shining Light on the Parkinson’s Personality and DBS

Many of you have heard of the so-called Parkinson’s personality, described as a person having traits and behavior such as:

Serious and humorless

Unwilling to take risks

Rigid and inflexible

Hard working

Obsessive

Introspective

Yep, that pretty much describes me as a “normal” person living with Parkinson’s Disease. I might throw in a several more characteristics:

Type A personality

Perfectionistic

Controlling

High-driving

Intelligent and highly educated

So what happens when “normal” people with Parkinson’s personality traits (perfectionist, high-driving and risk-adverse) take the risk of having Deep Brain Stimulation (DBS) Surgery?

We want perfection.

We want immediate results.

We want to be like the persons we were before we had Parkinson’s. We’d prefer to be a little better.

We want control of the neurostimulator.

And we want it now.

Despite the propaganda seen in videos promoting DBS, most of us won’t immediately jump out of our wheelchairs and run a marathon after DBS. DBS is not like a tonsillectomy or appendectomy where you take out the tonsils or appendix and you immediately feel better. It’s a process that requires patients with patience. Only after reprogramming of my DBS system, am I willing to say that I would do it over again (thank you, Dr. Olga).

The light bulb moment came for me when I figured out and accepted that with DBS, I am exactly the same person that I was at an earlier stage of Parkinson’s. And that’s good enough for me.

Sleep Chemical Central To Effectiveness Of Deep Brain Stimulation

Article Date: 24 Dec 2007 - 1:00 PST
http://www.medicalnewstoday.com/articles/92679.php

A brain chemical that makes us sleepy also appears to play a central role in the success of deep brain stimulation to ease symptoms in patients with Parkinson's disease and other brain disorders. The surprising finding is outlined in a paper published online Dec. 23 in Nature Medicine.

The work shows that adenosine, a brain chemical most widely known as the cause of drowsiness, is central to the effect of deep brain stimulation, or DBS. The technique is used to treat people affected by Parkinson's disease and who have severe tremor, and it's also being tested in people who have severe depression or obsessive-compulsive disorder.

Patients typically are equipped with a "brain pacemaker," a small implanted device that delivers carefully choreographed electrical signals to a very precise point in the patient's brain. The procedure disrupts abnormal nerve signals and alleviates symptoms, but doctors have long debated exactly how the procedure works.

The new research, by a team of neuroscientists and neurosurgeons at the University of Rochester Medical Center, gives an unexpected nod to a role for adenosine and to cells called astrocytes that were long overlooked by neuroscientists.

"Certainly the electrical effect of the stimulation on neurons is central to the effect of deep brain stimulation," said Maiken Nedergaard, M.D., Ph.D., the neuroscientist and professor in the Department of Neurosurgery who led the research team. "But we also found a very important role for adenosine, which is surprising."

Adenosine in the brain is largely a byproduct of the chemical ATP, the source of energy for all our cells. Adenosine levels in the brain normally build as the day wears on, and ultimately it plays a huge role in making us sleepy - it's the brain's way of telling us that it's been a long day, we've expended a lot of energy, and it's time to go to bed.

The scientists say the role of adenosine in deep brain stimulation has not been realized before. Even though scientists have recognized its ability to inhibit brain cell signaling, they did not suspect any role as part of DBS's effect of squelching abnormal brain signaling.

"There are at least a dozen theories of what is happening in the brain when deep brain stimulation is applied, but the fact is that no one has really understood the process completely," said Robert Bakos, M.D., a neurosurgeon at the University of Rochester and a co-author of the paper, who has performed more than 100 DBS surgeries in the last decade. "We've all been focused on what is happening to the nerve cells in the brain, but it may be that we've been looking at the wrong cell type."

Nedergaard's team showed that the electrical pulses that are at the heart of DBS evoke those other cells - astrocytes - in the area immediately around the surgery to release ATP, which is then broken into adenosine. The extra adenosine reduces abnormal signaling among the brain's neurons.

The team also showed that in mice, an infusion of adenosine itself, without any deep brain stimulation, reduced abnormal brain signaling. They also demonstrated that in mice whose adenosine receptors had been blocked, DBS did not work; and they showed that a drug like caffeine that blocks adenosine receptors (the reason why caffeine helps keep us awake) also diminishes the effectiveness of DBS.

"It may be possible to enhance the effectiveness of deep brain stimulation by taking advantage of the role of agents that modulate the pathways initiated by adenosine," said Nedergaard. "Or, it's possible that one could develop another type of procedure, perhaps using local targeting of adenosine pathways in a way that does not involve a surgical procedure."

The latest work continues Nedergaard's line of research showing that brain cells other than neurons play a role in a host of human diseases. ATP in the brain is produced mainly by astrocytes, which are much more plentiful in the brain than neurons. Astrocytes were long thought of as simple support cells, but in recent years, Nedergaard and colleagues have shown that they play an important role in a host of diseases, including epilepsy, spinal cord disease, migraine headaches, and Alzheimer's disease.

The research on DBS came about as a result of a presentation Nedergaard made to colleagues about her research on astrocytes. Bakos linked her detailed description of astrocyte activity to what he sees happening in the brain when deep brain stimulation is applied. Based on Bakos' experience in the operating room and with funding from the National Institute of Neurological Disorders and Stroke, Nedergaard went back to the laboratory and analyzed the effects of deep brain stimulation in a way that no one had ever before considered.

"The correlation between what we see in the clinic and Dr. Nedergaard has found in the laboratory is really quite startling," said Bakos. "All the credit goes to her and her team. This has been a nice interchange of information between the clinic and the laboratory, to speed a discovery that really could have an impact on patients."

----------------------------
Article adapted by Medical News Today from original press release.
----------------------------

The lead authors on the paper are post-doctoral research associate Lane Bekar, Ph.D., and neurosurgeon Witold Libionka, M.D. The Rochester team is based both in the Department of Neurosurgery and the Center for Translational Medicine. In addition to Nedergaard and Bakos, other authors from Rochester include research assistant professors Guo F. Tian and Takahiro Takano; graduate students Arnulfo Torres and Ditte Lovatt; technical associate Qiwu Xu; former post-doctoral research associate Xiaohai Wang; and Erika Williams, a Fairport native and an undergraduate student at Williams College. Jurgen Schnermann of the National Institutes of Health also contributed.

Source:
Tom Rickey
University of Rochester Medical Center

So You’re Considering Deep Brain Stimulation

You're thinking brain surgery. Yikes - how did it come to this?

A blog reader wrote me saying that he was considering Deep Brain Stimulation (DBS) for Parkinson's Disease. This gave me the opportunity to summarize my ideas before his initial DBS consultation/evaluation:

Some people cope with the anxiety of surgery by learning details, whereas some cope by getting a broad overview. Do you prefer specifics or generalities?

If you want to learn about specifics...

Purchase Shaken at:
http://www.lilafilms.com/shaken.htm

Watch the DBS story on Wired Science on PBS:
http://www.pbs.org/kcet/wiredscience/video/255-deep_brain_stimulation.html

Read Joel Davis and Steven Gulie's DBS stories listed on my blog under the PD/DBS Link at:

Joel Davis:

The Heart of the (Gray) Matter
http://www.newsreview.com/sacramento/Content?oid=oid%3A30716

I Knew the Drill
http://www.newsreview.com/sacramento/Content?oid=327152

Steven Gulie:

A Shock to the System
http://www.wired.com/wired/archive/15.03/brainsurgery.html

Wired Science Explores Deep Brain Stimulation
http://www.wired.com/science/discoveries/news/2007/11/wiredscience8

Read my DBS/Programming stories on my blog at:
http://katekelsall.typepad.com/my_weblog/parkinsons_deep_brain_stimulation/index.html

Join the free DBSsurgery Yahoo group at:
http://health.groups.yahoo.com/group/DBSsurgery/

After joining, write an email of introduction to the group, including where you live and where you are considering surgery. Hopefully there will be someone in the group who has had DBS at the same center with the same team. Ask lots of questions. People with PD like to help.

Once you are a member, check out the "Files" section to obtain a list of questions to ask neurosurgery team at your appointment.

Check out the DBS-STN link at:
http://www.dbs-stn.org/links.php

Check out the Medtronic sites at:

Home page at:
http://www.activadbs.com/

Questions and answers page at:
http://www.medtronic.com/neuro/parkinsons/activa_qa.html

Check out National Parkinson's Foundation's Ask the Surgical Team site at:
http://www.parkinson.org/NETCOMMUNITY/Page.aspx?pid=258&srcid=198

Prepare a list of your questions, concerns, worries about DBS and bring to your appointment. Don't leave your appointment until your questions are answered. After the appointment, ask yourself if you would be comfortable with this team doing DBS (as comfortable as one can be considering it's brain surgery).

Ask the neurosurgeon for a list of patients and couples who have had DBS that you and your spouse could talk to by phone or in person. Ask if there is a DBS support group that you and your spouse might attend.

Good programming is just as important as good surgery. Find out all the details about programming.

Take two aspirin and call me in the morning (just kidding). If you are not terrified about proceeding with DBS after doing all of this, call me or send me an email, and we can talk further.

Good luck.