August 19 Caring and Sharing. What an opportunity to find out how other Parkinsonians and their caregivers are doing.
September 16 Dr. David Vargas, D.C., will share his views and experiences with acupuncture and its effect on patients with Parkinson's disease.
June Support Group Meeting
A round table discussion was held. The six panelists were all members of our support group. A Special ”Thanks” to: Sharon Amstutz, Kent Buesching, Bruce Dunwiddie, Lana Koegel, Sandy Kump and Nancy Nomina.
The evening was filled with honesty, sincerity, and lots of emotion. The most frequent comments heard from the people in attendance were:
“All of the speakers were so positive about their experience, and they said they would do it again.”
“Everyone seemed to be so upbeat and happy.”
These were some of the (pre-surgery) symptoms shared by the group:
Freezing and stiffness, couldn’t drive, night terrors-abusive to mate during sleep, tremors, lack of energy, dyskinesia-frequent jerky movement, falling out of bed, lack of exercise, and needed assistive devise to walk.
These were some of the (post-surgery) symptoms shared by the group:
Less stiffness-able to move more, decreased tremor, smiled more, improved speech, could now do housework, fewer meds needed, fewer side-effects from meds, no longer in nursing home, able to exercise more frequently.
The general consensus of the speakers is, “Don’t be afraid of the surgery. It does work. Your quality of life will improve. Your self-confidence will improve.”
Want to learn more about the surgery? Our July 15th speaker is Dr. Michael Munz, neurologist, who has performed many DBS surgeries. Come and learn!
A NOTE FROM DAN SPANGLER
On Thursday, June 17th, Marijo Sliger and I presented the program “THE HOSPITALIZED PERSON WITH PARKINSON’S DISSEASE”. There were over fifty nursing, therapy and other staff in attendance.
Our major focus was how Parkinson’s patients are treated and are their Parkinson’s meds administered as required for the patient.
The program was well received and hopefully we will be meeting with other nurses and therapy staff at other locations in the Parkview Health Network. After Parkview it hopefully will be on to the Lutheran Network, etc…
On a positive note, I just visited one of “our own” at Parkview “Main” and am happy to report his Parkinson’s meds were being administered correctly and on schedule.
WE NOW MUST DO OR PART. There are forms in the June FWPSG newsletter, and on line at www.fwpsg,org. that you can access. These forms give pertinent information about your Parkinson’s so that the hospital staff can better serve you. Fill them out and keep them in a safe place in the event you are hospitalized in the future.
On a personal note, thanks Marijo for your invaluable help and support. “I Couldn’t have been done without your help”.
CAREGIVER TIPS
When to Stop Driving
When should we help someone with PD start thinking about the possibility of not driving? This is such an individual decision. Here are some thoughts that might help:
1. Where are they driving?
City streets with lots of starts and stops.
Interstate highways – high speed.
County roads with little traffic and no pedestrians.
2. What is their record of violations?
3. How good are their reflexes?
4. Can they think fast enough to react in an emergency to keep from hitting someone or another vehicle?
5. How good is their space perception?
6. Can they stay focused?
6. Are they “on” or “off”?
7. How would they feel if they caused an accident attributable to PD?
These are just some of the points you’ll need to think about when deciding if and when to address the issue. There will be an opportunity to share your thoughts and tips at the next Care Giver Round Table in August.
Marcia McKibben
__________________________________________________________________
The following two articles were found on the Medtronic website. You may remember last year when Bruce Gardner raised money for the Fort Wayne Parkinson’s Support Group by riding in his bike across Indiana (RAIN). This is the company that makes the medical device and Bruce works for Medtronic. I understand that he will be at the next meeting, along with Dr.Munz, so if you have questions about the device, you may be able to speak directly with Bruce
The first article provides a detailed explanation of what it can do for Parkinson’s disease. In the second article Medtronic also provides guidelines regarding what stage of the disease you might want to have it done.
____________________________________________________________________
What Is DBS Therapy?
Medtronic Deep Brain Stimulation (DBS) Therapy for Parkinson's Control is a surgical treatment proven to reduce some of the symptoms associated with Parkinson's disease (PD).1
How It Works
DBS uses a surgically implanted medical device, similar to a cardiac pacemaker, to deliver electrical stimulation to precisely targeted areas within the brain.
Stimulation of these areas blocks the signals that cause the disabling motor symptoms of Parkinson's disease. The electrical stimulation can be noninvasively adjusted to maximize treatment benefits. As a result, many individuals may achieve greater control over their body movements.
Kinetra Neurostimulator
The Medtronic DBS System consists of three implanted components:
Lead – A lead consists of four thin coiled insulated wires with four electrodes at the lead tip. The lead is implanted in the brain.
Extension – An extension connects to the lead and is threaded under the skin from the head, down the neck and into the upper chest.
Neurostimulator – The neurostimulator connects to the extension. This small, sealed device, similar to a cardiac pacemaker, contains a battery and electronics. The neurostimulator is usually implanted beneath the skin in the chest below the collarbone (depending on the patient, a surgeon may implant the neurostimulator in the abdomen). Sometimes called a "brain pacemaker," it produces the electrical pulses needed for stimulation.
These electrical pulses are delivered through the extension and lead to the targeted areas in the brain. The pulses can be adjusted wirelessly to check or change the neurostimulator settings.
Operating the System
Your surgeon may provide you with a small, handheld patient programmer or magnet. This programmer lets you turn the system on and off by holding it for 1 or 2 seconds against the area where the neurostimulator is implanted. However, in most cases, the neurostimulator is always on.
When to Consider Deep Brain Stimulation
Don't wait to talk to your doctor about Medtronic DBS Therapy. There's a window of opportunity when DBS Therapy is most effective at controlling your Parkinson's disease symptoms.
Deep brain stimulation may be a treatment option for people who have Parkinson's disease and:
Have responded well to the medication Levodopa
Still receive benefit from medication, but notice that it's becoming less effective or causing intolerable side effects
Require multiple medications, or more frequent doses to manage their symptoms
When Is DBS Therapy No Longer an Option?
DBS Therapy is no longer a treatment option when: Your PD symptoms are no longer responsive to medication
You are severely disabled even in the best "on" state
Medical conditions prevent you from having surgery
When Is It Time to Talk to My Doctor About DBS Therapy?
It's never too early to ask your doctor about Medtronic DBS Therapy. And it's important that you don't wait too long. Your doctor relies on you to communicate how satisfied you are with your symptom control.The main goals of Parkinson's disease treatments are to:
Increase periods of symptom control and good mobility ("on" time)
Minimize side effects from treatments
This becomes more difficult as Parkinson's disease progresses. Your doctor may need to increase the doses of your medication and introduce new ones to help you control symptoms. Over time you'll experience fewer "on" times and/or the increased doses of medication may cause troubling side effects.
Stay in communication with your doctor about your "on" and "off" times. Once your medications start to become less effective, it may be time to consider Medtronic DBS Therapy.
____________________________________________________________________
The following article shows the latest developments in Deep Brain Stimulation while we continue to explore this topic in the Fort Wayne Parkinson’s Support Group. Our appreciation goes out the panel of our own members, who so graciously shared their own stories of DBS at the June meeting.
It seems that the more I learn the more questions develop in my mind. Perhaps you share this feeling. Have your questions ready for our next speaker, Dr. Munz, on July 15th at Turnstone.
Deep Brain Stimulation Works in Two Sites
for Parkinson's Disease
for Parkinson's Disease
HealthDay Reporter by Steven Reinberg
HealthDay Reporter – Wed Jun 2, 7:08 pm ET
WEDNESDAY, June 2 (
HealthDay News -- People suffering from Parkinson's disease can benefit from deep brain stimulation in either one of two sites in the brain, a new study finds.
The Veterans Affairs researchers compared two different targets in the brain for deep brain stimulation -- the subthalamic nucleus (STN) and the globus pallidus interna (GPi) -- both of which affect motor function. The procedure involves placing a fine wire into either of the two areas, after which an implanted battery delivers a finely tuned electrical current to stimulate the brain, often resulting in dramatic improvement in motor function.
"Most of the neurosurgery field has been using the STN target, with little strong evidence that it was the best target for stimulation," said researcher Frances Weaver, director of the Center for Management of Complex Chronic Care at Hines VA Hospital in Illinois.
"But recent reports suggest that there may be some negative consequences of STN targeting, including cognitive and psychological changes," she added.
The report is published in the June 3 issue of the New England Journal of Medicine.
For this study, researchers compared the STN and GPi targets in a
randomized trial and looked at patient outcomes. In the trial, 299 patients were assigned to either STN or GPi deep brain stimulation.
Weaver's team found that patients improved equally in motor function, regardless of which target was used.
Overall, about half of the patients had serious side effects. The most common was infection at the incision site. By the end of the two-year study, 99 percent of these side effects were resolved.
"The decision as to which target in the brain to stimulate to treat Parkinson's disease should consider the other symptoms and problems of Parkinson's disease," Weaver said. For example, the use of medications can be reduced to a greater extent after STN stimulation than GPi stimulation, she noted.
"Medication has effects on other symptoms, so if a patient is experiencing other symptoms besides motor problems that are better managed by medication, you may want to select the GPi -- where less reduction in medication is necessary," Weaver said.
Both STN and GPi deep brain stimulation are equally effective in improving motor symptoms in people with advanced Parkinson's disease, Weaver said.
"Serious adverse events are frequent for both targets, but are resolved through stimulation or medication adjustments, and other interventions, as needed," she added.
Dr. Michael Okun, national medical director of the National Parkinson Foundation, said that "this is an important study for Parkinson's disease patients and for their doctors as it opens the door for tailoring therapy and for tailoring brain targets for individual symptom profiles."
He added: "This two-year prospective randomized study showed that both STN and GPi were effective in treating the motor symptoms of Parkinson's disease, and that there were subtle but potentially important differences between targets."
The first signs of Parkinson's are usually motor control problems such as shaking, rigidity, slowed movement and poor balance. In later stages, patients develop a variety of cognitive and mood problems, including depression, apathy, slowed thinking, confusion, impaired memory and trouble sleeping.
In early stages of the disease, motor symptoms can be controlled by medications such as L-dopa. But for patients with advanced Parkinson's, the drugs are less effective.
Taken from the Health Day News online
