Shake, Rattle and Roll

Parkinson's Disease's Deficits

It's 3:02 in the morning in Colorado. It's NOT a normal waking time for me. However, most of my friends around the world with Parkinson's Disease (PD) have fragmented sleep patterns and wake up in the middle of the night or too early in the morning. But the lack of sleep in PD patients is a story for another time.

There are too many deficits or "lacks of" with PD starting with the "lack of dopamine." In the middle of the night, I am stewing about my "lack of voice and speech." It happened again yesterday: the "lack of communication" when I was talking to a Deep Brain Stimulation (DBS) patient and his family at the hospital. I secretly admired the family member who had the guts to ask me: “How did DBS affect your voice and speech?” I knew he was worried about his father sounding like me after DBS.

My voice and speech have been impacted negatively by PD and worsened by DBS.

The organization DBS-STN conducted an interesting survey, "Speech in individuals with PD with and without DBS" at:  http://www.dbs-stn.org/UserFiles/File/SpeechIn%20Ind_PD_rev_.pdf

The survey indicated the following:

“It is common for individuals with PD to experience monotonous and reduced pitch and loudness, variable rate of speech, short rushes of speech, imprecise consonants, and a breathy and harsh voice.”

and

“Some research has found that speech intelligibility (clarity in expressive speech) worsened following DBS, and speech sounded more slurred. DBS has also been found to have an adverse impact on intonation or rhythm, articulation, and intelligibility; the stimulation itself can cause changes in speech."

My voice and speech sometimes suffer from further “lacks”:

Lack of strength

Lack of volume

Lack of clarity

Lack of warmth

Lack of vitality

Lack of articulation

Lack of variety

Lack of speed

Lack of being heard

Lack of being understood

which result in my:

Lack of self-esteem

Lack of confidence

Lack of contact with people

Lack of feeling normal

I often feel like One Big Lack!

Occasionally my voice and speech seem almost like my pre-PD self. This is the reason that I refuse to delete my 10-year-old voice mail greeting which demonstrates my potential for a warm and clear voice.

At my last DBS programming session, my neutologist/programmer and speech therapist claimed that my voice sounded "perfectly fine," that the goal is understandable speech, and they can understand me (my interpretation was "So what's the problem?").

When 600 people were chatting in the lobby after the Rockyettes dance performance on June 11, my speech therapist commented that she heard every word I said above the roar of the crowd. It is ironic that I am satisfied with my dance performance but dissatisfied with my speech performance in a situation that requires no speaking.

I don’t know if the professionals are accustomed to such poor speech and voice in their PD patients, that my speech and voice sounds “perfectly fine” to them. But the medical folks are not there to witness the frustrated phone calls or the anger in the faces of the audiences when they can’t hear or understand what I’m saying.

It is similar to the experience that most of us have had when taking our car in for repair only to discover that our car works “perfectly fine” when the car mechanic is present.

During the past years, I’ve tried the following measures to improve my speech and voice. You'll notice that I'm no slacker. 

Thyroplasty

• Before I was diagnosed with PD thirteen years ago, I went to an ear-nose-and throat physician because of my “lack of voice volume.” During the evaluation process, he discovered that my vocal cords didn't come together when I spoke. The only population he had seen this was in stroke patients. It was obvious that I did not have a stroke, but he never considered the possibility of PD. He suggested having a surgical procedure called a thyroplasty to correct vocal cord weakness. Patients with vocal cord weakness have a weak, breathy and hoarse quality to their voice and speaking requires considerable effort.

Traditional speech therapy

Lee Silverman Voice Treatment (LSVT) and post LSVT exercises including “Think Loud” at: http://www.lsvtglobal.com/

Voice Aerobics at: http://www.voiceaerobicsdvd.com/

Toastmasters International at: http://www.toastmasters.org/

DBS programming adjustments

The BREATHER­ – this device strengthens and acts like resistance training for respiratory muscles. Information about the BREATHER can be found at the following websites: www.blaismedical.com  www.pnmedical.com  www.beterairways.com

Blowing up balloons – to strengthen lung capacity

Facial steamer

Humid climate or humidifier

Singing in the shower and car

White noise machine – to talk louder than machine to increase my voice volume

Metronome –to pick up the tempo of my voice

I have found that LSVT, Voice Aerobics, the BREATHER, and humid weather sometimes make my voice and speech almost seem normal.

Perhaps this is as good as it gets with PD and DBS. Perhaps I’m greedy and want it all – to talk and dance simultaneously–imagine that! Perhaps I need to lower my expectations and learn to live with it. However, despite my deficits with PD, I’m not ready to give it up and will keep on talking and dancing for as long as possible.

Would You Do It Over Again?

Tomorrow is the 4th year anniversary of my Deep Brain Stimulation (DBS) surgery performed on May 4, 2005. The most frequent question that I'm asked about DBS is: "Would you do it over again?"

With  programming woes for the first two years following DBS, when someone asked this inevitable question, my response was an emphatic "NO!"

After being miserable for two years following DBS, I was blessed to obtain a referral to the University of Colorado Health Sciences Center for reprogramming with Dr. Olga Klepitskaya. With her blend of competence and compassion, she has worked wonders in straightening out my programming problems.

During the past two years, I have been able to:

• Co-lead a DBS support group and volunteer as a "DBS patient and family liaison" at the University of Colorado Hospital with Valerie Graham.
• Participate in yoga classes three times a week.
• Take Broadway dance classes and perform with the Rockyettes dance ensemble.
• Maintain and continue writing my blog.
• And most importantly, resume my accordion playing with the Silver Notes accordion ensemble.

Sure, I still have Parkinson's Disease, and my voice is often soft and slurred, but DBS with competent programming has given much of my life back.

If you ask me the same question today, my response is, "Yes, Yes, Yes, I would definitely do it over again."

You can read about  my DBS surgery story, Uneventful Brain Surgery, at:  http://katekelsall.typepad.com/my_weblog/2006/12/uneventful.html

A Patient's First Hand Account of Living with a Battery-Operated Brain

Just in time for Parkinson’s Awareness Month in April is the book:

Life With a Battery-Operated Brain – A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson s Disease

By Jackie Hunt Christensen, to be released on April 15, 2009. 

What I like best about this book:

· It is written by a Deep Brain Stimulation (DBS) patient and for patients and their families considering DBS.

· It provides an easy-to-understand, step-by step guide through the entire DBS process (DBS is not an event, but a process, says the author).

· The book provides checklists of questions to ask the neurosurgeon, programmer, and others involved in the DBS process.

· The book has illustrations, photos, appendices with links to other valuable information, with excerpts from the author’s personal journals and opinions from other DBS patients.

· The book includes topics such as the DBS evaluation process, making the decision, the logical tasks required in preparing for surgery including psychological preparedness, the impact on the family, a detailed description of what actually happens in surgery, the programming process, care and maintenance of DBS, side effects of DBS and alternatives to DBS.

· It gives power back to DBS patients, arming them with information and questions that they might not have considered.

· It’s the kind of book that I wish had existed when I was going through DBS.

I highly recommend this practical guide to DBS. In fact, I like the book so much that I wish I had written it myself.

Further information about Life With a Battery-Operated Brain – A Patient's Guide to Deep Brain Stimulation Surgery for Parkinson s Disease can be obtained at: http://www.lifewithbobbook.com/

SHAKEN Premiering on PBS

I am thrilled that the award-winning documentary, SHAKEN: Journey into the Mind of a Parkinson's Patient, will be enjoying nationwide broadcast on PBS starting April 1, 2009.

Check out station information and broadcast times for your city at:

www.lilafilms.com/shaken_screenings.htm

For those who have already seen SHAKEN, you don’t want to miss this updated version which includes a follow-up on Paul Schroder, the Parkinson’s patient in the film.

Related Story:

The Documentary Shaken at:  http://katekelsall.typepad.com/my_weblog/2006/10/the_documentary.html

Weight vs. Height

I’ve always been more preoccupied with losing height than gaining weight.

However, my focus has now shifted to losing weight and gaining height because of my 16 pound weight gain since Deep Brain Stimulation. I’ve lost 8 of those 16 pounds at a turtle’s pace through Weight Watchers and exercise and am determined to lose the remaining 8 pounds.

In terms of height, I have a long history of being vertically challenged. It started in kindergarten when we stood in line from the shortest to the tallest, and I was always the first. However, my doctor says that I will never again see 5'1" with my shrinking height.

I’ve discovered a couple of tricks to looking like I'm taller. Dr. Abraham Lieberman suggests that we practice standing with our hands on our hips and talk with our chin raised, like Obama.

Yoga guru, Paul Zieger, suggested that there are arm positions we can use in addition to our hands on our hips, e.g. our arms stretched behind our back with our fingers interlaced or our thumbs in our armpits lifting the front body.

So the next time you see me, I hope to be 8 pounds lighter, taller, with my chin raised, my hands on my hips, my fingers interlaced behind my back and/or my thumbs in my armpits.

Related Story:

Post-DBS-STN Weight Gain

Ready for DBS?

You jumped through all the hoops in getting ready for Deep Brain Stimulation (DBS).

· You have advanced Parkinson’s Disease (PD) and have tried the gamut of PD medications.

· You still respond to Sinemet and have marked differences between “on” and “off” symptoms.

· You are significantly disabled from PD.

· You are in reasonably good overall health except for PD.

· Your cognitive abilities are relatively intact.

· You have no untreated or poorly controlled psychiatric disorder or severe memory problems such as dementia (DBS can worsen these conditions).

· The MRI of your brain shows little or moderate brain shrinkage and no other abnormal areas that could increase the risk of brain surgery.

· You are capable of participating in the programming of the device. This requires you to provide feedback during programming sessions and to attend clinic visits regarding the maintenance of your implant.

· You have a good support network of family and friends.

If you meet the above criteria, theoretically you should qualify for DBS from the DBS medical team’s perspective. However, even if you are medically ready, you might not be emotionally prepared to take the risks of DBS.

You might not be ready for DBS if you experience any of the following:

· You don’t think your PD is “bad enough” to have DBS. You believe that you can withstand PD for awhile longer without DBS.

· You are ambivalent about whether to proceed.

· The thought of having brain surgery makes you extremely anxious.

· You have reservations about DBS that haven’t been addressed by your DBS team.

· You are not confident in the expertise and experience of your DBS team.

· Your family and friends have warned you against brain surgery.

· You are unclear about how you will benefit from DBS and suspect that your expectations may be unrealistic.

· You have observed others who have had DBS, which has made you anxious about having DBS.

· You are not prepared to accept the risks and outcome of having DBS as compared to the possible benefits that you could receive. You believe the risks of DBS outweigh the benefits.

At our DBS support group, we discussed the question as to when DBS is an appropriate option for a patient. We talked about a two part answer to this question.

The first part involves the physical "readiness" of the patient (is this the appropriate stage in the progression of the disease of this particular patient at which DBS presents itself as a reasonable option) which we concluded must be left to the discretion of the medical professionals to determine.

The second part involves the emotional "readiness” of the patient (is the patient truly committed to proceed with DBS and cope with whatever the outcome may be), which we believed is best determined by the patient himself.  

Only when both parts can be satisfied is the timing truly right for DBS.

I’m interested in hearing from those who have had DBS and their answers to the following questions:

· How did you overcome any reservations and ambivalence about DBS?

· Are you happy or unhappy about proceeding with DBS?

Study Shows Medtronic's Deep Brain Stimulation Therapy Improved Quality of Life and Motor Function in Advanced Parkinson's Disease

A recent study shows that Medtronic's Deep Brain Stimulation Therapy improves the quality of life and motor function in patients with advanced Parkinson's Disease. The findings were published in the January 7, 2009 edition of the Journal of the American Medical Association.

View a summary of the study at:

http://www.earthtimes.org/articles/show/study-in-the-journal-of,670410.shtml

Related Story:

Parkinson's Treatment Shows Promise in Patients at:

http://www.chicagotribune.com/features/lifestyle/health/chi-deep-brain-07-jan07,0,4721141.story

Scott Orr Battles Parkinson's Through DBS

Scott Orr reported an inspiring account of his DBS surgery on the following four blog posts:

Part One: No, It Actually IS Brain Surgery at http://lifeinthiscentury.com/194-194.htm

Part Two: Screws in My Skull and the Actual Surgery at http://lifeinthiscentury.com/part-two-screws-in-my-skull-and-the-actual-surgery-198.htm

Part Three: The Aftermath at http://lifeinthiscentury.com/part-three-the-aftermath-210.htm

Part Four: Life Goes On http://lifeinthiscentury.com/part-four-life-goes-on-215.htm

A film crew from Channel 2, KWGN in Denver, Colorado also filmed his DBS surgery at:

Scott’s Story: A Journey of Hope at http://www.kwgn.com/pages/scotts_story

Related Article:

Article from In Touch, Colorado Neurological Institute at http://www.thecni.org/PDF/CNI.051-InTouch_Summer08.pdf

9% of Proceeds toward the Parkinson's Cause

Mary Sullivan’s blog, Life with Shaky at http://www.lifewithshaky.blogspot.com/, is a touching account of sharing her life with her husband who has Parkinson’s Disease (PD).

Mary asked for my help in getting the word out about Deborah Fryer’s film SHAKEN. Deborah is offering discounts to persons with Parkinson’s (PWP) and their family and friends. 

The DVD’s online price is $150, but if you contact Deborah directly as a PWP, you can order the film for $29.99.  Support groups get a discount as well, at $75.  If you refer to Mary Sullivan’s blog, Life With Shaky, or refer to her by name when ordering, Deborah will donate 9% of proceeds from those sales back to the PD cause because every 9 minutes someone is newly diagnosed with PD.

Deborah Fryer can be contacted at:

Website: www.lilafilm.com

Email: deborah@lilafilms.com

Phone: 303-442-1966

Bluegrass Banjo Player Benefits from Brain Surgery

I couldn’t picture it -- Eddie Adcock strumming bluegrass music on his banjo during brain surgery. Adcock, a professional music, underwent Deep Brain Stimulation surgery to relieve a hand tremor. Watch and listen to his inspiring story on the following:

http://news.bbc.co.uk/1/hi/sci/tech/7665747.stm

http://news.bbc.co.uk/1/hi/world/americas/7666179.stm

Fate Lends a Helping Hand

 Kate Kelsall, left, Valerie Graham, right

Fate Lends a Helping Hand

By Valerie Graham

Copyright © 2008

In hindsight, it is clear that the fickle hand of fate had finally fumbled in our favor. We met on a spring afternoon in 2006 in a local pie shop, brought together by the proverbial “friend of a friend.” I am an attorney who was forced to abandon my profession in early 2002 due to my rapidly deteriorating health condition. Ten years previously, I had been diagnosed with early onset Parkinson’s Disease (PD) at age 38. My colleague and ultimate dear friend, Kate Kelsall, who with multiple degrees ranging from a Masters in Social Work to a Certified Public Accountant, was facing the same painful decision that I had faced earlier. Kate was considering whether or not to retire on disability from her beloved position as Coordinator of Volunteer Services at the University of Colorado Hospital due to early onset PD. Kate was diagnosed ten years earlier at age 46.

Despite our separate paths, both of us had arrived at the doorstep of Deep Brain Stimulation (DBS) surgery and indeed crossed the threshold. I had my first DBS surgery in 2002 at Swedish Medical Center in my hometown of Denver, Colorado. Kate, as a patient of Kaiser Permanente, had traveled to Sacramento, California for her surgery in 2005. Of course, we each have endured trials and tribulations along the way.

However, the more interesting story from our perspectives is how circumstances conspired to bring us together. Both of us had lamented the need for a special support group to address the unique concerns of DBS patients. We had unique concerns above and beyond those addressed in a regular PD support group, and thought others who had experienced DBS might have similar issues.

It was in that spirit that Kate and I organized the first and only DBS support group in the Denver metro area with the first meeting being held in October 2006. Although originally conceived as a support group for those who had already undergone DBS, the group quickly expanded to include candidates for DBS as well. In little more than a year, our membership has grown in excess of 70 members. It encompasses patients and their loved ones, medical professionals, as well as the renowned filmmaker of the short documentary “Shaken.” (This film poignantly chronicles the struggles of one of our fellow group members as he attempts to cope with this cruel illness with all the grace, humor and dignity which he can muster.) After a year of meeting quarterly, the group recently decided to begin meeting monthly with guest speakers periodically scheduled.

Like all afflicted with PD, even after DBS, some days are better than others for both Kate and me. Wanting to make the most of our good moments, however, we began to explore other avenues for making a contribution to our peers. During this process of exploration, we realized how much we would have benefited had we been able to meet and speak prior to our DBS surgeries with people who had already gone through the experience.

This realization of lessons learned, coupled with the void which we both felt having been forced by illness to abandon our chosen professions, spurred Kate to draft a description for a volunteer position in which we could continue to contribute in a meaningful fashion. She submitted it for the consideration of hospital administrators and the medical professionals on the DBS team at the University of Colorado Hospital. Neurosurgeon, Dr. Steven Ojemann, spearheads the team together with movement disorder neurologist, Dr. Olga Klepitskaya, who completed a fellowship in DBS at Stanford University Medical Center in 2006. With their approval and support, Kate and I commenced our volunteer duties as “DBS Patient and Family Liaisons” and official members of the DBS team at the University of Colorado Hospital in October 2007.

Since coming on board, Kate and I have offered services which have run the gamut.

· We have met and spoken with prospective DBS candidates and their families both one on one and via our DBS support group meetings to discuss our personal experiences with DBS and explain the procedure in general in an effort to alleviate their fears and concerns as well as formulate realistic expectations with respect to the surgery.

· We have accompanied patients to their appointments, partially to provide moral support, but also to make suggestions to the other team members about how various aspects of the arduous evaluation process might be improved.

· We were enlisted to help locate suitable living arrangements for a DBS candidate from a neighboring state who had no local contacts and very little support from friends and family for proceeding with the surgery.

· On one occasion, at a patient’s request, we escorted her from the examining room to obtain a CT scan prior to surgery to insure her safe arrival. We assisted her in the process by completing the necessary forms while she was in an off-med and highly dyskinetic state. We were even able to clarify the lab tech’s misunderstanding of the doctor’s orders as to precisely what type of procedure he deemed necessary.

· We were recently asked to facilitate and expedite obtaining a letter from a patient’s doctor explaining DBS for a patient’s son who was in a military unit. Mere days before his father’s DBS surgery, the letter was faxed to the son’s commanding officer, and as a result of our intervention, he was accorded leave to attend his father’s surgery and assist the family in providing post-op care.

· We have provided comfort and moral support to patients as they undergo the relatively recent outpatient surgical procedure prior to DBS surgery which permits the use of a frameless stereotactic guidance system for more accurate placement of the electrodes in the brain during surgery.

· We have provided an empathetic ear to families and other loved ones by sitting with them during those seemingly interminable hours of waiting for the patient to emerge from DBS surgery as they move into recovery.

· We have visited with patients and their families in the Neurology-ICU unit following DBS surgery, as well as with patients admitted for in-patient rehabilitation services post-surgery.

Once when visiting an older woman who was undergoing rehabilitation services post-DBS, I discovered that the device that controlled her DBS system had been confiscated by hospital staff. Her programmer had previously pre-set the device to allow her to make adjustments to the neurostimulation within very narrow parameters. Despite the minor adjustment which she had self-administered earlier that day, by the time I arrived at the hospital the patient was experiencing acute distress, not only from the resulting dykinesia, but also from the nursing staff’s refusal to return the remote device to her so that she could return to her previous settings and thus alleviate the dyskinesia. In an effort to assuage the staff’s concerns, I explained to them that her neurologist had in fact approved the patient’s self-adjustments and that this was done only when the neurologist was confident that such pre-set adjustments were safe and within the patient’s prerogative. A note to that effect had apparently been inadvertently omitted from the patient’s chart. As a result of my intervention, the remote was ultimately returned to the patient. She was able to return to her original settings, thereby eliminating the troublesome dyskinesia caused by her adjustment.

Our most recent contribution has been a compilation of a timeline outlining the typical DBS evaluation and surgical process at the University of Colorado Hospital. This has been approved for distribution to prospective DBS candidates.

On a larger scale, due to Kate’s tremendously successful blog, Shake, Rattle and Roll, about the challenges of living with PD and DBS, the work which we are doing in the DBS community has garnered wider attention. It has brought us into contact with many people around the world who have shared similar experiences.

More recently, Kate and I have been invited to share our personal experiences with DBS at local educational seminars for the public in the Denver metro area. We’ve also been invited to participate both as speakers and to demonstrate the intricacies of DBS programming at professional presentations to medical residents, faculty, rehabilitation and nursing staff.

Only five months into our latest endeavor as hospital volunteers, Kate and I enthusiastically anticipate even greater opportunities to serve the DBS community as volunteers. Neither of us could have possibly imagined the course our lives and volunteer efforts have taken. Nevertheless, we both agree that this is by far the most personally rewarding work we have ever had the privilege to be engaged in!

Valerie Graham can be contacted by email at vgraham999@comcast.net.

Kate Kelsall can be contacted by email at katedenver@aol.com.

First published in DBS-STN.org at: http://www.dbs-stn.org/participate-details.php?ID=12 

Permission granted to republish.

The Truth

We thought we might have been twins separated at birth. Jean from Missouri (pronounced “ma-zoo ra” by everyone from there) found me on my blog. We both have Parkinson’s, and Jean will soon be evaluated as a candidate for Deep Brain Stimulation (DBS) at the University of Kansas Medical Center in Kansas City.

The similarities are uncanny. Both of us growing up in Kansas City, Jean attended the elementary school across the street from where my Dad managed the paint and wallpaper store in Brookside. Jean’s brother took accordion lessons from the same teacher at the same music school in Kansas City as me.

I enjoy her sense of humor and Jean generously gave me permission to publish “The Truth.”

The Truth by Jean from Missouri

Hi Kate,

I must accept the truth.  I had begun to believe that we were twins, separated at birth, but I finally understand that this isn't so.  The fact that I am ten years older should have been a clue.  I began to suspect something when I learned from your blog that you are a vegetarian and eat sensibly.  I eat hot dogs. There were other hints--you are active in the PD community; I am passive.  You have had two professional careers; I had a job.

But, taking another look at your Blog photo, I was struck by the truth: YOU WEAR OUTFITS.  My husband and I have been looking at brochures for retirement communities in the KC area.  All of the women pictured in the brochures wear OUTFITS.   I don't own any OUTFITS.  Does Walmart even have an outfit department?  At the age of 68, I have the wardrobe of a 4 year old--lots of play clothes and a party dress.  I think that by cramming I can pass the mental acuity tests required for DBS and independent living facilities.  But do you think that I'll lose points for failure to dress like a grown-up?  This is serious stuff.

I suddenly find myself being judged and tested.  I want my doctors to like me.  If we move to a retirement community, I want to fit in.  Having Parkinson's has turned me back into an insecure teenager.  I read your Blog on Cramming, and I started counting backwards by 13's.  I fill out forms, dozens of forms, conscientiously.  I want the doctor to find me worthy.  As much as I don't want to care, I CARE.  I want to be confident again.  I want my self-assurance back.

We'll also tour some retirement communities while we're in Kansas City.  I will not go out and buy an outfit.

Jean from Missouri

Victory Summit

:

I am delighted to be one of the speakers on the panel of DBS patients at the following event sponsored by the Davis Phinney Foundation:

The Victory Summit™

A Quality of Life Symposia Series

For People Living with Parkinson’s Disease

Saturday, October 4, 2008

Registration begins at 8:00 AM - Program runs from 9:00 AM–1:30 PM

Westin Hotel Conference Center
Highway 36th and 104th/Church Ranch Road
Westminster, Colorado

Presentation topics include:

· The importance of speech therapy

· The benefits of exercise

· DBS and its effects on quality of life

Featuring presentations and panel discussions between local and national Parkinson's disease researchers, neurologists and physical and speech therapists.

Be Inspired.

Celebrate Moments of Victory with Davis Phinney, former professional cyclist, whose career includes stage victories in the Tour de France and an Olympic Bronze Medal. Diagnosed with Young-Onset Parkinson's disease at the age of 40, Davis' life continues to be as inspirational off the bike as it was on it. Join us as Davis shares his journey and his inspiring philosophy on how to make ever moment a moment of victory.

You are invited to participate in this very exciting opportunity! Pre-event registration is $25 per person and $30 the day of the event. Scholarships are available – call for details!

Register Online at: http://www.davisphinneyfoundation.org

or

Register by phone at 303-733-3340

Program Schedule at:  http://www.davisphinneyfoundation.com/events/victorysummit.asp

Related Link:

Davis Phinney Celebrates His Greatest Victory Through DBS

Post-DBS-STN Weight Gain

My Question to Kathrynne Holden from Ask a Parkinson Dietician A Free Service Sponsored by the National Parkinson Foundation   Hi Kathrynne, I am a 58 year old post-menopausal woman who has experienced significant weight gain (15-20 pounds) since DBS-STN for PD in May 2005. I am also concerned about my increasing cholesterol level. I was diagnosed with PD 12 years ago. The explanation that I've always heard is that DBS-STN changes one's metabolism and if DBS-STN is successful, generally one shakes less. I had a significant tremor prior to DBS which has almost completely subsided. I never had dyskinesia pre-DBS but developed some after DBS, and the dyskinesia is now almost non-existent through excellent programming. I continue with the same vegetarian diet as I have for the past 25 years. Also, I walk 2x/week, do yoga 2x/week and dance 2x/week. Before my PD diagnosis, I enjoyed running and biking but currently I'm afraid to run or bike. I am delighted with the overall benefits of DBS-STN. Is there anything you would suggest to combat the weight gain and rising cholesterol level? Here's a link to an article that may shed some light: http://brain.oxfordjournals.org/cgi/content/full/awm113v1?eaf Thanks for your commitment to PD patients, Kate Kelsall

Kathrynne Holden’s Response:   Dear Kate, You are both proactive and well-informed, and this is of immeasurable benefit in combating PD. Your exercise program is very well-thought-out – walking benefits both muscles and bones, yoga counteracts some of the effect of PD upon the muscles and joints, and dance is proving repeatedly to improve PD symptoms as well as health. Regarding weight gain, it’s likely that you now have less or no ‘off time,’ and you state your tremor is controlled. Both of these contribute to energy expenditure. Post-menopause, there is a decreased production of estrogen, which in most women is accompanied by fat gain. If you are certain your daily calorie intake has not changed, then these, along with the decreased production of estrogen that accompanies menopause, are likely the contributing factors. However, if you are using an agonist, such as Mirapex or Requip, these can cause edema (fluid retention in the tissues), which is a very frequent cause of weight gain in PD. Your doctor can determine whether edema is present. If so, I would use salt very moderately, and include potassium-rich foods daily. The DASH diet is an excellent choice both for its natural diuretic properties and because it is rich in the foods of most benefit in PD, and can easily work for vegetarians. If weight gain is due to increased fat, then, if it is possible I would try to add an extra walk or dancing weekly to increase energy expenditure. It may also be helpful to break up meals into 4-6 small meals daily; the body is more apt to store calories as fat from three large meals than several small ones. Estrogen also helps to control serum cholesterol, and again, it’s likely that the post-menopausal condition is having an effect, despite a vegetarian diet. However, I would ask your doctor to review total cholesterol, HDL, LDL, triglycerides, C-reactive protein, and serum homocysteine. If your ratio of HDL to total cholesterol is high, the cholesterol may not be a concern, especially if triglycerides and CRP are normal. I mention homocysteine, in case you use levodopa. Long-time users of levodopa often develop elevated levels of homocysteine, and if you use levodopa, I strongly recommend you ask your doctor to establish a baseline. Homocysteine is associated with stroke and heart attack, depression, and dementia. Regarding the increased cholesterol, if you are not already doing so, I would switch to extra-virgin olive oil both for cooking and for dipping bread with meals; it is a fine source of anti-inflammatory. Include a couple of tablespoons of mixed raw nuts daily – almonds and walnuts particularly, also Brazil nuts, filberts, and pecans. Nuts are a rich source of natural vitamin E as well as protective fatty acids. Finally, does your diet allow you include fish? It is the finest source of omega-3 fatty acids, which are superb at helping to raise HDL and lower LDL and triglycerides. Fatty fish, and fish oil capsules, are both excellent. If you do not use any animal products, then I recommend use of flax seed oil; though not as effective, it is still a good product. I hope this is helpful; write back and let me know how you are doing. Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/

Battery Blues

“Your battery is almost dead,” uttered Jenna, the Medtronic’s rep. She tested my Kinetra pulse generator at the deep brain stimulation (DBS) support group last Friday, July 11. Jenna discovered that the charge in my battery was perilously low, despite the fact that my surgery for Parkinson’s (PD) was a mere three years ago.

 

I anticipated the battery lasting four to five years, not three. In fact, my friend, Valerie’s battery, although the older Soletra model, has lasted for more than six years. Valerie, like the Energizer Bunny, keeps going and going and going. I’m jealous.

 

The complications to having an expiring battery were that my husband, Tom, and I had scheduled and paid for an Alaskan trip to start in ten days and that the neurosurgeon who normally performs the battery replacements surgeries was on vacation.

 

It’s not like I can stop off at the Battery Store and pick up a spare battery or pull out the jumper cables in the trunk of my car and charge it up. But I understand rechargeable batteries are on the DBS horizon.

 

I’ve heard stories of fellow DBSers whose batteries had totally expired. They end up in a sort of PD hell until the batteries are replaced. The PD symptoms return with a vengeance. An active DBSer can turn into a bed-ridden one in a matter of minutes. Someone described it as being in a big black hole and unable to get out.

 

I was overwhelmed by the kindness and can-do attitude of staff of Medtronic and University of Colorado Hospital who orchestrated the referral and surgery in the record-breaking time of four days.

 

While in my brain fog awaiting for surgery on Tuesday, I observed two look-alike pre-op nurses who described themselves as twins with different mothers. When the second nurse came on duty, she said, "Oh, you're THE DANCER" as if I was the only dancer in the world. I vaguely recall meeting the nurses in our volunteer work with other DBS patients and their families. However, I'm quite sure that I never talked to her about dancing. Perhaps she overheard a conversation that I had with a patient. Who knows?

 

Recovering at home, I’m receiving emails about taking it easy in preparation for our trip to Alaska.

Rest and relaxation have never been my strong suit.

Advice from the Energizer Bunny: If your doctor doesn’t normally do so, it is important to have the charge in your IPG battery periodically monitored, particularly the longer it has been implanted.  Although the typical lifespan of the battery is three to five years, it varies from individual to individual depending upon your particular settings (including, amplitude, pulse width and frequency, as well as the number of active contacts utilized).  And, if at all possible, try to anticipate the waning of your battery so that you have sufficient time to schedule replacement surgery.  None of us wants to find ourselves in the predicament of having a dead battery, much less a dead battery far from home and appropriate medical treatment.

 

Bon Voyage!

More Abbreviations: DBS and EMI

Jackie Hunt Christensen’s article on Deep Brain Stimulation (DBS) and Electromagnetic Interference (EMI) was recently published at:

 

Watch Where You’re Beaming That Signal

By Jackie Hunt Christensen

Published in StarTribune.com

June 29, 2008

http://www.startribune.com/opinion/commentary/22122349.html?location_refer=Commentary

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.