Jan 20 - Disasters and Disabilities - We are working with the Red Cross and other emergency agencies (fire, Police, ambulance, etc.) to present a panel on how people with Parkinson's handle disasters.
Feb 17 - Caring and Sharing - Split into two groups to discuss issues.
Mar 17 - working on a program about sleep issues
Apr 21 - Dr. Fen Li Chang gives an update on Parkinson's issues since 2000
May 19 - Dr. Heidi Musgrave talks on Depression and Dementia
November Meeting
LSVT BIG
LEE SILVERMAN VOICE TRAINING
Developed by Becky Farley
“A special “Thank You” to Betsy Van Markwyk, MA,CCP-LP, and her cadre of experts, Shelly Bihasa, PT, Kim Converse, OT, Camile Brennan, PTA, and Lisa Konger, PT, for their presentation on LSVT BIG. Even though I was at home with the flu, I heard rave reviews about the program.” (NDS)
What follows is a brief synopsis of the LSVT BIG Program. This was taken from the booklet handed out at the May PSG program on exercise.
Think BIG exercise is about increasing the size and amplitude (speed) of movement. You can incorporate Think BIG into aerobic or “low impact” exercising.
As Parkinson’s becomes more invasive, people begin to move more slowly and they use smaller movements. Steps become slower and shorter. There is a relationship between speed and amplitude of movement. The bigger the step, the faster the step. Studies have shown that using larger amplitude movements will increase movement speed.
Think BIG was developed as a means to reduce bradykinesia. (Slowness of movement) training targets whole body movement and the theory is that this amplitude still carries over into everyday movements. Studies concur.
Participants are trained to practice “great big” steps, and “exaggerated arm swings, etc. The use of assistive devices can help balance as well as increase amplitude. Adjustments will need to be made depending upon the assistive device used. Trekking poles (exerstriding) is another way to Think BIG, and it also helps balance.
Once “BIG” walking/moving is mastered, challenges can be added to your routine. i.e.: head turns, left and/or right turns, random step length, pivot turns, and/or figure-8 paths.
Remember, accept challenges, stay safe, and calculate your risks.
You can contact Betsy at Parkview Home Health Care - 260-373-9751 for training options,
A NOTE FROM DAN SPANGLER
Although Thanksgiving Day has passed, we have much to be thankful for, and should practice thankfulness all year long. I trust the following poem will serve as a challenge throughout 2011.
BE THANKFUL
Be thankful that you don’t have everything you desire.
If you did, what would there be to look forward to?
Be thankful when you don’t know something,
for it gives you the opportunity to learn.
Be thankful for the difficult times.
During those times you grow.
Be thankful for your limitations,
because they give you opportunities for improvement.
Be thankful for each new challenge,
because it will build your strength and character.
Be thankful for your mistakes.
They will teach you valuable lessons.
Be thankful when you’re tired an weary,
because it means you’ve made a difference.
It’s easy to be thankful for the good things.
A life of rich fulfillment comes to those who
are also thankful for the setbacks.
Gratitude can turn a negative into a positive.
Find a way to be thankful for your troubles, and they can become your blessings.
- Author Unknown -
Although Thanksgiving Day has passed, we have much to be thankful for, and should practice thankfulness all year long. I trust the following poem will serve as a challenge throughout 2011.
BE THANKFUL
Be thankful that you don’t have everything you desire.
If you did, what would there be to look forward to?
Be thankful when you don’t know something,
for it gives you the opportunity to learn.
Be thankful for the difficult times.
During those times you grow.
Be thankful for your limitations,
because they give you opportunities for improvement.
Be thankful for each new challenge,
because it will build your strength and character.
Be thankful for your mistakes.
They will teach you valuable lessons.
Be thankful when you’re tired an weary,
because it means you’ve made a difference.
It’s easy to be thankful for the good things.
A life of rich fulfillment comes to those who
are also thankful for the setbacks.
Gratitude can turn a negative into a positive.
Find a way to be thankful for your troubles, and they can become your blessings.
- Author Unknown -
CAREGIVERS' CORNER
A Caregiver's Resolutions
This is the time of year when we are reminded to review the past twelve months, consider what we need to do this next year, and finally, to make one or more resolutions that will potentially fit with our resolve to improve whatever we need or want to improve.
Unfortunately, too often we beat ourselves up over past “failures” (Quotation marks for those who focus on what went wrong instead of on what went well.) Let's look on the bright side of the picture. Let's give credit where credit is due even if we may have fulfilled less than all our resolutions.
Here are some thoughts to consider as you assess your role as a caregiver to your loved one.
Be it resolved that, during the year 2011,
· I will pay attention to my own health in the same way I attend to the health of my loved one.
· I will find time to rest, eat right and exercise—even if I have to do these things a little at a time.
· I will make time to get out of my role as caregiver and back into my role within the family.
· I will look at my life and my loved one with fresh eyes and see the benefits of care giving rather than the burdens.
· I will learn to play; to see the amusing, the funny and the absurd in our lives as things to laugh about.
· I will undertake new ways this year to help reduce my stress.
· I will honor my loved one's struggle and perseverance.
· I will look for the good in my care giving activities and recognize that I do them well.
· I will honor those who help my loved one and me throughout the year, and I will tell them so.
· I will be the best caregiver I can be but that is not all I will be: I will recapture who I am with dignity.
Created by Jane Henderson, Coordinator,
Family caregiver Training Program,
St. Luke's Hospital
Kansas Cit, MO
TIPS TO MAKE YOUR LIFE BETTER
by Ed Gatke
This month's topic comes from Defending Against the Enemy: Coping With Parkinson's Disease by Eric Morgan, Ph. D.
Dr. Morgan writes that as we progress in our PD (Parkinson's Disease) some of us will have problems with swallowing and/or choking on food. Choking happens when solids or liquids enter the air passage to the lungs and obstruct the flow of air. When we swallow the air passage is closed automatically, but this is not necessarily so for PWP (Persons With Parkinson's) Dr. Morgan wrote that choking was such a frightening experience, that in a desire for self-preservation, he finally created a safe-eating procedure that works for him.
His simple rules follow:
Place only a small quantity of food in the mouth at any one time.
· Chew thoroughly until you are absolutely sure that no lumps remain.
· Swallow, wait a couple of seconds and swallow again.
· If unsure that the throat is absolutely clear of all solids, take a small drink.
· Be sure not to place two foods of contrasting texture (consistency) in the mouth at the same time. They require different chewing and swallowing methods. The choice of method is normally taken care of by the autonomic nervous system which, in the case of a PWP, may not be controlling the muscles correctly. A child learns from experience how to chew and swallow each different consistency of food, but this is no longer an automatic procedure for the PWP.
· Dr. Morgan says the best thing to do when choking occurs is to stand up, bend from the waist, and then cough. The movement of the food is directed down and gravity may help clear the blockage.
Remember that choking is a life-threatening occurrence!
(Suggestion: For those with concerns about choking, you might want to cut out the section above and keep it close to the table where you eat your meals. Review it periodically as a reminder.)
PHILHARMONIC RESEARCH PROJECT
The project is well underway and moving forward. The Institutional Review Board (IRB) has given its approval; IPFW is making the Rhinehart Center Recital Hall available; Philharmonic\musicians have agreed to participate; and Purdue has signed on with the project as well
There will be three scheduled ninety minute concerts, each with a different music style. They are scheduled for January 16th, February 13th and March 6th, in 2011. All are on Sunday at 3:00 p.m., in the recital hall. There is the possibility of a fourth meeting for informational purposes, tentatively scheduled for Thursday, January 13, 7:00 p.m. at the recital hall. We will keep you posted on the fourth meeting.
Currently we have 16 People with Parkinson’s (PWP), and their caregivers, set to attend all three concerts free of charge. Each PWP will fill out three, five or six question forms (one, before, one during, and one after each concert) responding to questions about the effects of live musical performance on their Parkinson’s symptoms.
We continue looking for participants, to make this worthwhile project a major success. If interested, call, or email Dan Spangler (dspangler16@frontier.com) or 260-486-4893. Wouldn’t it be fantastic if we could have a total of 0ne hundred people participating?
Please note the map below to make finding the recital hall at IPFW easier.
This makes three research projects we have been involved with in the past year. Let’s stay involved in the pursuit of a cure for our disease
Editor’s Note: As we approach the end to a very fine year, let us celebrate some of the latest research findings for Parkinson’s disease.
Study: Brain energy crisis may spark Parkinson's
from: Associated Press Online | November 1, 2010
By LAURAN NEERGAARD
WASHINGTON, Nov. 1, 2010 -- Parkinson's disease may stem from an energy crisis in the brain, years before symptoms appear.
If the research pans out, it points to a possible new approach for Parkinson's: Giving a boost to a key power switch inside brain cells in hopes of slowing the disease's inevitable march instead of just treating symptoms.
"This is an extremely important and interesting observation that opens up new therapeutic targets," says Dr. Flint Beal of New York's Weill Cornell Medical College, who wasn't involved with the new study.
Beal said scientists already are planning first-stage tests to see if a drug now used for diabetes might help Parkinson's, too, by targeting one of the implicated energy genes.
At issue are little power factories inside cells, called mitochondria. Increasingly, scientists suspect that malfunctioning mitochondria play some role in a list of degenerative brain diseases.
After all, brain cells are energy hogs, making up about 2 percent of body weight yet consuming about 20 percent of the body's energy. So a power drain could trigger some serious long-term consequences.
"It could be a root cause" of Parkinson's, says Dr. Clemens Scherzer of Boston's Brigham and Women's Hospital and Harvard University.
About 5 million people worldwide, and 1.5 million in the U.S., have Parkinson's, characterized by increasingly severe tremors and periodically stiff or frozen limbs. Patients gradually lose brain cells that produce dopamine, a chemical key to the circuitry that controls muscle movement. There is no cure, although dopamine-boosting medication and an implanted device called deep brain stimulation can help some symptoms.
No one knows what causes Parkinson's. To find genetic clues, Scherzer gathered an international team of researchers to comb studies of more than 300 samples of brain tissue - from diagnosed Parkinson's patients, from symptom-free people whose brains showed early Parkinson's damage was brewing, and from people whose brains appeared normal. They even used a laser beam to cut out individual dopamine-producing neurons in the most ravaged brain region, the substantia nigra, and examine gene activity.
The team found 10 sets of genes that work at abnormally low levels in Parkinson's patients, genes that turned out to play various roles in the mitochondria's energy production, Scherzer recently reported in the journal Science Translational Medicine. Especially compelling, the genes also were sluggish in people with presymptomatic, simmering Parkinson's.
And all the gene sets are controlled by what Scherzer calls a master regulator gene named PGC-1alpha - responsible for activating many other genes that maintain and repair those mitochondrial power factories.
So might revving up PGC-1alpha in turn boost underperforming mitochondrial genes and protect the brain? To see, the researchers tested dopamine-producing neurons from rats that were treated in ways known to cause Parkinson's-like damage. Sure enough, boosting the power switch prevented that damage.
This genetic evidence supports years of tantalizing hints that mitochondria are culprits in Parkinson's, says Dr. Timothy Greenamyre of the University of Pittsburgh Medical Center.
He ticks off the clues: A rare, inherited form of Parkinson's is caused by a mutated gene involved with mitochondrial function. A pesticide named rotenone that can kill dopamine cells and trigger Parkinson's symptoms in animals also is toxic to mitochondria. So is another Parkinson's-triggering chemical named MPTP.
Now with Scherzer's study, "it's going to be harder and harder for people to think that mitochondria are just a late player or an incidental player in Parkinson's disease," Greenamyre says.
The crux of all that complicated neurogenetics: A diabetes drug named Actos is among the compounds known to activate part of that PGC-1alpha pathway, and Weill Cornell's Beal says it's poised for an initial small trial in Parkinson's.
Separately, a nutrient named Coenzyme Q10 is believed important in mitochondrial energy production, and Beal is leading a study to see if high doses might help Parkinson's. Results are due in 2012.
But Scherzer issues a caution: The average Parkinson's patient has lost a
New Zealand is at the cutting edge of what could be a breakthrough in the treatment of Parkinson's disease.
Patients here will be the first in the world to take part in clinical trials of a locally developed drug aimed at treating the disease, not just its symptoms.
Noel Noonan lives on a cocktail of drugs. "This is a new one that's meant to help quite a bit," he says. He has lived with muscle stiffness and slowness from Parkinson's for 12 years.
"In some ways I want to retain my independence, but I have to chop it back and accept help from others, which is frustrating and demeaning too."
Eight hundred New Zealanders are newly-diagnosed with Parkinson's each year.
Many like Bill Griffiths suffer from constant tremors.
Current drugs only treat the symptoms and lose their effectiveness over time. But two Otago University scientists may have cracked the code for halting the disease's progression.
Professor Robin Smith and Dr Michael Murphy, who are now working at Britain's Cambridge University, developed a compound called Mito Q eight years ago.
Now it has been approved for stage two human trials.
It is hoped Mito Q will be the first drug to specifically target brain cell damage caused by oxidants which attack the mitochondria - the nerve cells energy source.
Lab trials have shown the drug shuts these oxidants down, which potentially prevents further damage.
"What we've found is the chemical we've made is a very effective antioxidant - a much targeted effective antioxidant which we hope if we load into people with the early stages of Parkinson's, the rate of decay will be much slower," Smith says.
One hundred and twenty New Zealand patients with early stage Parkinson's will be the first trialed.
"I don't want people going away thinking we have a cure but in the last few years there's been an understanding of what goes on to cause this breakdown of cells in Parkinson's, and this drug should target that mechanism and if it does this will be a major transformation," Auckland The research has been backed by $23 million of venture capital, as well as nearly $2 million from the Foundation for Research, Science and Technology.
"We have to contain our expectations but we are quite hopeful," Dr Snow says.
The trial results will be out in 18 months. It is hoped if Mito Q works it has the potential to help other diseases which attack the brain the same way, like Alzheimer's, Motor Neurone and Huntingdon's disease.
For more information on Parkinson's disease see www.parkinsons.org.nz
Taken from the National Parkinson’s Foundation website
Donepezil (Aricept®) Reduces Falls in People with Parkinson’s
- Nov 11 2010
In a preliminary study, taking the drug donepezil (Aricept®) reduced the number of falls by half among a small group of people with Parkinson’s disease (PD) who had trouble with balance and experienced frequent falls. The drug already is an approved therapy for the cognitive symptoms of Alzheimer’s disease, and may be helpful for cognitive symptoms in PD. The study appears in the October 2010 issue of Neurology.
Among the movement symptoms of Parkinson’s, balance and gait difficulties are perhaps the most difficult to treat. While carbidopa/levodopa (Sinemet®), the gold-standard therapy for motor symptoms, can reduce some falls in some people with PD, there is generally not a therapy to protect people from Parkinson's from falls. As many as two-thirds of people with PD experience falls each year. Both injuries and the fear of falling can limit the daily activities of a person with PD.
Medications that block the neurotransmitter acetylcholine were among the first medications to be used for Parkinson’s, even before carbidopa/levodopa. However, earlier studies have linked low brain levels of the neurotransmitter acetylcholine to falls. Parkinson’s causes people to lose neurons that are responsible for producing this chemical. Donepezil works by boosting acetylcholine levels. While previously shown to increase PD tremor, the authors of the new study, led by Kathryn A. Chung, M.D., at the Oregon Health & Science University, reasoned that donepezil might improve balance and reduce falls in people with PD.
A total of 23 people with PD who reported falling or nearly falling more than twice a week enrolled in the double-blinded study. Participants took donepezil for six weeks and a placebo for six weeks, with a three-week break in between. The average participant age was 68; 15 were male; and six had undergone deep brain stimulation.
Results
· Study participants fell about half as often when taking Donepezil as compared to a placebo.
· Participants who fell the most before the study had the most improvement after six weeks on donepezil.
· The number of near falls was the same whether participants were taking Donepezil or placebo.
· About a third of participants experienced drug side effects including nausea, sweating and insomnia, and three participants dropped out due to medication side effects.
· Two participants who experienced freezing episodes did not benefit from donepezil.
What Does it Mean?
Falls are a serious complication of PD. People with PD may be at risk for falling for a variety of reasons including slower reflexes, postural instability, inattentiveness, light headedness and dyskinesia. Carbidopa-levodopa can help only in a subset of these causes, and not infrequently, additional treatment is needed. Although these results are encouraging, studies with larger numbers of participants will be needed to test donepezil as a therapy that reduces falls. Further research also may help uncover the mechanism by which donepezil may help to prevent falls. This would allow the clinicians to prescribe donepezil to those who fall because of that mechanism (for example, if donepezil improves inattentiveness, to provide it for those who fall because of that reason).
Learn More
Read, "Fall Prevention Strategies for People with PD" from PDF's Fall 2009 newsletter.
Reference: Kathryn A. Chung, Brenna M. Lobb, John G. Nutt, and Fay B. Horak. Effects of a central cholinesterase inhibitor on reducing falls in Parkinson disease. Neurology, Oct 2010; 75: 1263 – 1269 taken from www.pdf.org
Winter
You can sense dread in the trees as winter approaches.
With it’s freezing temperatures, and robbing of the sunlight.
With it’s chilling winds, and blinding storms
And yet when I look to winter all I see is the beautiful new fallen snow, and the crystals hanging off the sleeping trees.
When I think of winter I see new beginnings, and life put on hold so we can enjoy what we can of this Angelic season
I long for the passion that is winter. – Shannon Greenwald
