Shake, Rattle and Roll

Device-Envy

I’m jealous. When one of the members of the DBS support group showed up with her newly implanted Medtronic’s Activa^® PC Neurostimulator along with her new Activa^® Patient Programmer, I had a bad case of device-envy. I wanted one and wanted it now. However, since I had a DBS battery replacement about a year ago, it looked unlikely that I will need another battery replacement for 2-5 years.

I salivated when I saw her look at the device which revealed her exact settings. Instead, with my Kinetra model, l must try to recall with my fuzzy Parkinson’s brain which range was set by the programmer for each side of my brain and how many clicks up or down I have already performed.

The object of my desire is Medtronic’s Activa PC Neurostimulator.

(Not drawn to scale)

Activa^® PC is the first of Medtronic’s next generation, non-rechargeable Deep Brain Stimulation (DBS) neurostimulators.

Medtronic’s promotional literature indicates that it is ideal for people who prefer their device to be ‘fitted and forgotten’ – that’s me!

Key Features

The Activa PC neurostimulator contains an electronic circuit-board and is powered by a non-rechargeable, long-life battery. 

Size

The Activa PC neurostimulator is discreet and unobtrusive, with a similar size and shape to a cardiac pacemaker.  This is a full 24% smaller than Medtronic’s first-generation Kinetra^® device, meaning that many patients find the Activa PC device more comfortable.

The Activa Patient Programmer which accompanies the two new devices allows patients to work closely with their doctor to choose the level of DBS therapy that is right for them.  This provides optimal symptom control for many different situations, by allowing up to four pre-programmed stimulation patterns or groups.

Once my old DBS battery goes caput, I hopefully will get it replaced with an Activa PC device with the Activa Patient Programmer. If I had to choose today on the “four pre-programmed stimulation patterns or groups,” I would choose the following:

· One program for dancing

· One program for accordion playing

· One program for walking and hiking

· One program for speech

Other fine features include:

• Simple Status Check – The Activa Patient Programmer allows patients to easily check the status of the device with the icon-based LCD screen.

• Two User Modes –The Activa Patient Programmer can be switched between Simple and Advanced Modes.

• Simple Mode allows patients to check battery- and therapy-status at the touch of a button.

• Advanced Mode enables patients to make more detailed adjustments, allowing them to switch from four program settings for optimal therapy control.  For example, in Advanced Mode, patients switch from one active physician-programmed therapy pattern to another, depending on their current, specific needs.

Activa^® RC Neurostimulator

(Not drawn to scale)

The world´s first and smallest rechargeable DBS device, the Activa RC has an extra-long battery life of nine years.

Overview

The Activa^® Re-Chargeable (RC) neurostimulator is one of the next-generation Activa family of products for patients requiring Medtronic Deep Brain Stimulation (DBS) therapy. 

The Activa RC neurostimulator has two main benefits.  Not only is it the world’s first rechargeable DBS neurostimulator, but it is also the smallest implantable DBS device yet.

Key Features

The Activa RC neurostimulator contains an electronic circuit-board and is powered by a rechargeable battery that can last for up to nine years.  This means that most Medtronic DBS patients with an Activa RC device will be free from replacement surgeries for nearly a decade.  The patient’s only task is to choose between daily or weekly battery recharge options.

Size

The Activa RC neurostimulator is discreet and unobtrusive, with a similar size and shape to a cardiac pacemaker.  It has a volume of just 22 cubic centimeters, is only 9 millimeters thick, and weighs a mere 45 grams.  This small size improves patient comfort and is an ideal option for children, women, or patients with low body weight.

Activa^® Patient Programmer (used for both new models: Activa PC and Activa RC)

(Not drawn to scale)

Up to four individualized settings can be pre-programmed by the physician, enabling optimal symptom control for the patient.

Overview

The new Activa^® Patient Programmer is a highly intuitive controller that provides smart, targeted symptom management alongside Medtronic’s next-generation Deep Brain Stimulation (DBS) neurostimulators: the Activa RC and Activa PC family.

• Simple Mode allows patients to check battery- and therapy-status at the touch of a button.

• Advanced Mode enables patients to make more detailed adjustments, allowing them to switch from four program settings for optimal therapy control.  For example, in Advanced Mode, patients switch from one active physician-programmed therapy pattern to another, depending on their current, specific needs.

The table below compares the two new devices with the two older devices. It is in metric and was provided by John McDonald, Senior District Manager with Medtronic Neuromodulation, who manages a 7-state region in the U.S.

	Activa® RC	Activa® PC	Kinetra®	Soletra®
Volume	22 cc	39 cc	50 cc	26 cc
Weight	40 g	66 g	82 g	42 g
Height	54 mm	65 mm	61 mm	55 mm
Length	54 mm	49 mm	77 mm	60 mm
Thickness	9 mm	15 mm	15.2 mm	10 mm

The following table is the same as the one above, but converted for the metrically-challenged (that’s me).

	Activa® RC	Activa® PC	Kinetra®	Soletra®
Volume	1.34 in3	2.38 in3	3.05 in3	1.59 in3
Weight	1.41 oz	2.33 oz	2.89 oz	1.48 oz
Height	2.12 in	2.56 in	2.40 in	2.16 in
Length	2.12 in	1.92 in	3.03 in	2.36 in
Thickness	.35 in	.59 in	.60 in	.39 in

Sources of Information:

Presentation by John McDonald, Senior District Manager with Medtronic Neuromodulation, to DBS Support Group on September 11, 2009 in Denver, Colorado

For more info on the Activa PC:

http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/ActivaPC/index.htm

For more info on the Activa RC:

http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/activaRC/index.htm

For more info on the Activa Patient Programmer:

http://www.medtronic.eu/your-health/parkinsons-disease/device/our-dbs-therapy-products/activapatientprogrammer/index.htm

News Release from Medtronic:

http://www.parkinsonalliance.org/UserFiles/file/MedtronicNewsRelease_7_09.pdf

How Prevalent Is Suicide in Parkinson's Disease?

The dramatic headline “Suicide is Five Times More Likely in Parkinson’s Disease” caught my attention. It made it seem as though everyone with Parkinson’s Disease (PD) was either thinking about suicide, attempting suicide or committing suicide.

I was skeptical and asked Benzi Kluger, MD, neurologist and specialist in the non-motor symptoms of PD, at the University of Colorado at Denver.

Dr. Kluger’s comments about the study (at the bottom of this post) are as follows:

1) This is a relatively small study. There were just over 100 patients followed for 8 years and only 2 suicides. With such a small sample the chance of error is high. One more or less suicide would have totally changed their results.

2) Suicidal ideation (thoughts) seem to be higher in PD, which is not surprising because depression is also more frequent.

3) Suicide is a cultural phenomena and higher in Serbia, where this study was done, than in the US.

4) Some studies suggest suicide may be at increased risk after DBS, but again these studies are small.

5) There is probably some increased risk for suicide with PD, but larger studies are needed in this country to reliably estimate this risk. Physicians, patients and care givers should be aware of this risk and take it seriously.

1: J Neurol Sci. 2009 Sep 7. [Epub ahead of print]

Suicide and suicidal ideation in Parkinson's disease

Kostiæ VS, Pekmezoviæ T, Tomiæ A, Jeèmenica-Lukiæ M, Stojkoviæ T, Spica V, Svetel M, Stefanova E, Petroviæ I, Džoljic E.

Institute of Neurology CCS, School of Medicine, Belgrade, Serbia.

Little is known about the prevalence and correlates of suicidal behavior in Parkinson's disease (PD). In the first part of the study, we followed a cohort of 102 consecutive PD patients for 8 years and found that the suicide-specific mortality was 5.3 (95% CI 2.1-12.7) times higher than expected. In the second part, we tested 128 PD patients for death and suicidal ideation and administered an extensive neurological, neuropsychological and psychiatric battery. Current death and/or suicidal ideation was registered in 22.7%. On univariate logistic regression analysis, psychiatric symptoms (depression, but also anxiety and hopelessness), but not the PD-related variables, were associated with such ideation. On multivariate logistic regression analysis this association held for major depression (odds ratio=4.6; 95% CI 2.2-9.4; p<0.001), psychosis (odds ratio=19.2; 95% CI 1.4-27.3; p=0.026), and increasing score of the Beck Hopelessness Scale (odds ratio=1.2; 95% CI 1.0-1.4; p=0.008). In conclusion, the suicide risk in PD may not be as high as it is expected, but it is certainly not trivial. According to our data almost a quarter of PD patients had death and/or suicidal ideation, that may significantly influence their quality of life.

PMID: 19737673 [PubMed - as supplied by publisher]

The True Everyday Heroes

Kate Kelsall and Valerie Graham (photos courtesy of Deb Peek, University of Colorado Hospital)

We (Kate Kelsall and Valerie Graham) feel honored and humbled to have received Channel 7's "Everyday Hero" awards for our volunteer work as Deep Brain Stimulation (DBS) patient and family liaisons at the University of Colorado Hospital and co-founders and co-leaders of the DBS support group. At the same time, we both regard the true "Everyday Heroes" in this case to include:

(1) Our husbands and families who have stood by our sides through thick and thin and allow us the opportunity to contribute our time and energy to the Parkinson's and DBS communities;

(2) The remarkable DBS medical team at University of Colorado Hospital with whom we have the great privilege to associate, who work tirelessly to provide first-class care and exhibit seemingly inexhaustible compassion toward their patients; and

(3) Last, but certainly not least, each of the patients and their families that we have had the chance to assist these past two years, who never cease to amaze and inspire us with their unfailing courage, resourcefulness and resiliency in dealing with a chronic, progressive and presently incurable neurological illness. 

Channel 7 in Denver will be airing the segment which they taped concerning our awards on the following dates:

Sunday, September 27th at 10 p.m.

Monday, September 28th at 5 a.m.

Thursday, October 1st at 11 a.m.

Friday, October 2nd at 4 p.m.

Saturday, October 3rd at 5 p.m.

Sunday, October 4th at 7 a.m.

 

Story from Channel 7 in Denver:

Women Bring Hope to Parkinson's Patients

http://www.thedenverchannel.com/news/21139596/detail.html

 

I'm Not Bragging But...

Well, yes, I guess I am bragging. I just had to tell someone about my perfect week -- and it's only Thursday.

1. Valerie Graham and I were fortunate to be chosen to participate in the Clinical Research Learning Institute, sponsored by the Parkinson's Disease Foundation  The institute is in New Jersey from Thursday, October 15, 2009 through Saturday, October 17, 2009.

The Clinical Research Learning Institute (CRLI) provides people with Parkinson’s disease with the knowledge and skills necessary to be effective representatives and advocates within the clinical research enterprise. This multi-day training prepares individuals for such activities as: educating the community about the importance of clinical research and study participation; serving as representatives on Institutional Review Boards (IRBs) and Data Safety Monitoring Boards (DSMBs); and providing research sponsors and investigators with input on trial design, implementation and evaluation.

Following the Clinical Research Learning Institute, the Parkinson’s Disease Foundation (PDF) will actively engage with graduates to offer continuing educational opportunities, to help identify community engagement opportunities and to encourage exchange and interaction among CRLI participants.

Expenses for attending the Clinical Research Learning Institute (registration, travel, hotel accommodations, meals, etc.) are paid for by the Parkinson’s Disease Foundation (PDF).

2. Tuesday, 9/15/09 --  Valerie Graham and I were tricked into going to the hospital for a DBS meeting during the afternoon. We entered the conference room in the neurology clinic and the neurologist, neurosurgeon and entire DBS team lined the perimeter of the room.

A man shook our hands and said that he was Mitch Jelniker from Channel 7 news. Valerie and I were awarded the "Channel 7 Everyday Hero Award" for our volunteer work with DBS patients and their families (DBS Patient and Family Liaisons at the University of Colorado Hospital and as co-founders and co-leaders of the DBS support group). Channel 7 taped an interview with us even though we had a stunned, deer-in-the-headlights expression on our faces. Channel 7 will air the short video clip six times during the week beginning Sunday, September 27.

3. Wednesday, 9/16/09 -- This morning, Valerie Graham and I were two of the people being interviewed by the second year medical students about living with PD and DBS. When I mentioned that I was plagued by problems with my voice and speech, they looked puzzled and said "what problems?" Each of the ten students plus two professors said that they could hear me and understand me loud and clear!!

Valerie and I have become the dynamic duo, the go-getters for Parkinson's. Thanks for letting me brag about us.

Kate Kelsall

Speechless

He was my favorite person at Toastmasters when I was a member 13 years ago, at the time of my Parkinson's diagnosis. He was vibrant, talkative with a slight southern drawl and a folksy sense of humor. We both had become quite competent public speakers.

When I arrive home from the DBS support group last Friday, I see his and his wife's name on my phone's caller ID. I pick up the phone to retrieve the message but there is none. I turn on my computer and discover that his wife has sent me an email. She says that I wouldn't recognize her husband and that he has Primary Progressive Aphasia. I'm speechless.

Primary Progressive Aphasia (PPA) is a rare motor skills degenerative disease with no treatment and no cure. She says he is dizzy all the time, very thin, talks very little, cannot communicate verbally or in writing, walks with a cane, goes to bed at 7 PM, sleeps in a twin bed in the computer room on the main floor, has balance problems, and creates holes in the walls of their home due to his falling. Their son has moved back home to share her caregiving load. Again, I'm speechless, and relieved to respond by email and not have to formulate the right words of support in person.

Her world has narrowed to taking care of him before work, going to work, and taking care of him after work. She is articulate in describing what it's like for her, yet I am clueless about how difficult it must be and don't know how to respond.

For the past five years, their lives have been consumed by appointments with neurologists, MRIs, and PET scans. They finally found a neurologist who "wants to get to the bottom of this" instead of all the others with a "there is nothing we can do" attitude. The neurologist obviously knows what to say despite the dire prognosis.

I am a compassionate person, but with Parkinson's, I occasionally can't string the right words together at the right time. I have no idea the pain and frustration they must experience when he can't communicate and is totally speechless. 

More information on Primary Progressive Aphasia can be obtained at: http://www.aphasia.org/Aphasia%20Facts/primary_progressive_aphasia.html

Everything You Ever Wanted to Know about Yoga and Parkinson's Disease

Paul Zeiger and Carolyn Zeiger have set up a terrific new web site about yoga and Parkinson's Disease. Also included are articles by Carolyn on caregiving.

Their web site is easy to navigate and user friendly.

Check it out at:

http://www.parkinsonsyoga.org/

Gravity + Grace

Gravity + Grace: A Contemporary Opera by Frank Ferraro and Stephen Pellegrino

If you live near Pittsburgh, Pennsylvania, you won't want to miss this performance.

Artist Frank Ferraro was diagnosed with Parkinson's Disease at 42. His Collaborator and friend Stephen Pellegrino, was a caregiver to his father-in-law who also suffered from Parkinson's. These two artists have experienced the effects of a disease that changes lives. Together, they have created a contemporary opera that will resonate with any person facing adversity and those who care for them.

To find out more, visit www.gravityandgrace.org

or call the Parkinson Foundation of Western Pennsylvania @ 412-365-2086

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