December 2010

Dec. - No meeting - Have a Merry Christmas and Happy New Year

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 -

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

November 2010

November 18 Mrs. Betsy Van Markwyk , Parkview Home Health Services, is bringing physical and occupational therapists and a physical therapy assistant for a discussion and demonstration of the Lee Silverman Voice Training 'Big" Program. (LSVT - Big) Come, learn about large movement exercise to help you with balance and coordination,

December - No meeting Enjoy the holidays!

2011 - Scheduling in process .

What follows is a list of programs under consideration:
A program on emergency preparedness
Revisiting programs we had 5 to 10 years back
An update on stem cell research
Dementia and/or depression
Podiatry
Parkinson's update
Home health care
Lewy body disease
Osteoporosis
There are additional possibilities


OCTOBER MEETING
Mr. Fred Taube, Counselor
State Health Insurance Assistance Program

Thanks Fred, for an information-filled program and presentation on Medicare/Medicaid for 2011.

First and foremost, you should consider help to sort out all the “stuff” for Medicare/Medicaid for 2011. If you have an insurance agent who helps, great. If not call S.H.I.P. (State Health Insurance Assistance Program – 260-373-7592) a counselor can help you make sense of all the 2011 information. They have comparison sheets for all Medicare Advantage Plans, Medigap or supplemental policies, and “stand-alone” prescription drug plans that are being offered to Indiana residents for 2011.

There are so many details to attend to; they cannot be covered effectively in this meeting summary. Just remember that these companies are competing for your business. Also, to not compare plans, may result in an increase in premiums passed on by your 2010 provider.

Remember too, that those of us who have pre-existing conditions may face an insurability problem if we change providers.

Your plan, especially prescription drugs, is “patient specific”, so provide a listing of all drugs taken, and investigate all possibilities. There are no “cookie cutter” programs.

Also, don’t forget that December 31, 2010 is the deadline for making changes in our program.

Thanks again, Fred!


A NOTE FROM DAN SPANGLER

Volunteering is a noble gesture. We need more of it.
Thanks, Barb McKinnon for volunteering to be our photographer.
The program committee would like to encourage a volunteer to plan, with a small committee, up to three social events per year. These would be separate from our regularly scheduled activities. The sky’s the limit. Let your imagination soar! Step up and volunteer.
We currently have 28 volunteers for the Philharmonic Research Project, set for some time in January 2011. If you are interested is attending four philharmonic concerts as a part of the project, Step right up and volunteer.
We need help in distributing our brochures to doctors, hospitals, etc. in the area. Locations are organized by zip code. Just a few labels to affix, a few phone calls, and some delivering, are all that is required. Won’t you help us?
Call 260-486-4893, or email dspangler16@frontier.com with your decision.
THANKS!



COGNITIVE COMMUNICATION CLASS FOR PEOPLE WITH PAKINSON'S DISEASE

Now TWO sessions per week.

Peg Maginn, Speech Pathologist, is expanding her program. She now will meet clients Mondays and/or Wednesdays, 9:30-10:15 a.m. in the Turnstone Center Auditorium, 3320 N. Clinton St., Ft. Wayne. Cost is $6.00 per session or $10.00 per week for two sessions.

Class content will cover speech, voice, swallowing, and cognitive thinking. Be proactive. Strengthen your skills now!

Your spouse or caregiver may attend at no extra charge



CAREGIVERS' CORNER

Note: This month's column's focus is on mobility and walking and how to assist the person with Parkinson's (PWP).

Walking with someone can be better than using a walker. Let the PWP hold your arm while walking, and say out loud together, “Left, right, left, right, left right.” For some this helps them to concentrate on their movements. Your physical therapist can help determine when using a walker is safer.

Encourage them to bring their toes up with every step. If they tend to shuffle, you can follow these steps:

• Stop walking.
• Make sure their feet are about eight inches apart.
• Remind them to stand as straight as they can.
• Remind them to think about taking a long step.
• Have them take a step by bringing one foot up high, as if marching.
• They should lift their toes up and place their heel down first.
• They should roll onto the ball of their foot and toes.
• Then repeat this process with the other foot.
• Remember they should swing their opposite arm foreward when taking a step to improve the rhythm of their walking and their appearance. Remind them to swing their arms freely while walking which shifts body weight from their legs, lessens fatigue, and helps keep arms and shoulders loose.

If they drag their foot it is a good thing to consult an orthopedic specialist. Left untreated it may become worse and cause them to trip them self. Or, if stumbling persists, see your neurologist.

When turning they should walk into the turn. Have them walk around in a semicircle with feet apart; don't pivot on one foot by crossing their leg.

Before you start walking, count down from the number five to the number one, and begin walking. Let the PWP set the pace. When appropriate, announce upcoming changes in the terrain (“There 's a step down.”)

Depending on the extent of impairment of the person you are helping, to help them walk, stand in front of him/her and hold their hands. When you walk backward, gently guide them forward. Give verbal cues like,”Let's walk now.”

If the PWP wears bifocals, he may need extra help with stairs. Going down is often more difficult than going up. And always take one step at a time.


TIPS TO MAKE YOUR LIFE BETTER
by Ed Gatke
Note: This month's column is adapted from the book 300 Tips for Making Your Life Better by Shelley Peterman Schwartz.
LIFE IS ABOUT CHOICES. You may not have total control over your Parkinson's disease (PD). But you do have control over how you let it affect your life. Staying active and involved is possible with effort and determination.
Keep moving. Eliminate distractions, and tell your family and friends, depending on how advanced your PD is, that you may not be able to carry on a conversation while you are walking. If crowds or long-distance walking is involved, use a cane or walker for stability. Pushing a baby stroller or shopping cart may help you maintain your balance. Using a wheel chair may be a good option, especially at museums, sidewalk art shows, shopping, and amusement parks. Choose to make the necessary compromises and adjustments, so that you can stay involved in family and community activities.
Another way to stay active and involved is to continue doing the quiet leisure activities you enjoy. If the effects of PD or your medications make your favorite hobby difficult to pursue, try a variation on your hobby or learn a new craft or hobby. Keep your mind and your hands active by doing jigsaw puzzles, taking up painting or woodworking, learn to play a music instrument. (I took a three hour class on how to play a harmonica, and while I am not yet ready for Carnegie Hall, I learned enough to enjoy playing it; it also gives me another way to drive my wife close to the edge!) Take a class, so that you can learn along with others and meet new people who share your interests; there are many excellent classes available through your Parks and Recreation Department, adult education classes through the school corporations, some churches offer beginner classes in computers, etc. Watch the newspapers for announcements. Many different classes are offered through the public libraries. Most of these offerings are inexpensive; some meet only once while others are longer. If you have a skill that you haven't used in a while, pick up a beginner's book at the library and refresh your memory with introductory lessons. You will be surprised how quickly you will relearn a skill you thought you'd forgotten. Don't be hard on yourself if it takes you a while to master a new craft. Don't let initial frustrations discourage you from keeping at it.

Some people with PD have trouble with concentration, memory, or communication. If you feel these abilities have been affected help is available. Discuss your concerns with your doctor. See a neuropsychologist who will be able to help you identify exactly what cognitive deficits you might be experiencing and help you develop plans to keep you effectively on track. If you need help in knowing how to find a psychologist who can help you call, me at 484-6205 or send me an email at ektag@comcast.net

New ‘Big and Loud’ program helping those with Parkinson’s
DEB WUETHRICH

Tecumseh Herald - It’s rigorous. It’s vigorous. And it could result in up to two years of motor functioning for a person who has Parkinson’s Disease (PD).
A program that’s new to the Tecumseh community is being utilized at Carter Rehab. The LSVT Big and Loud Program helps individuals who have PD symptoms learn to emote and to move in ways that helps them deter or overcome characteristics that typically come with the disease.
Lynn Dennie, a physical therapist at Carter Rehab, said the LSVT stands for Lee Silverman Voice Therapy, a program founded 25 years ago by a family who’s mother, Lee had PD.
“The family said, ‘we wish we would have been able to hear mom better,’” Dennie said, since people with PD experience speech and voice disorders, including soft voice, monotone, breathiness, hoarse voice quality and imprecise articulation.
“Through much research, they found that a treatment that basically encompassed talking loud did work for them,” Dennie said. The program also changed how patients interacted with others, emotionally, socially, with mood and how their families responded. “With Parkinson’s, when you can’t be heard, you’re thinking you’re talking loud but you’re not” she said.
Another researcher, Dr. Farley, at the University of Arizona, found that if it works for voice, it should work for limbs, and expanded the program about three years ago to include exercises that help people “be big” through everyday tasks. But first, they have to learn how to do them. That’s where Carter Rehab comes in.
“Locally, Dr. Rebecca Poetschke, a neurologist, saw the research and said, ‘We really need this in the Tecumseh area,’” Dennie said. Through discussion with Carter Rehab’s director, Bob Leffler, the center decided to send Dennie to California to be certified in the program. She is the only one certified in the area at this point.
“The progress these patients are making is phenomenal,” said Dennis.
Tecumseh residents Iris and Dick Gage learned of the LSVT Big and Loud program just after Dick was diagnosed with PD earlier this year. There had been noticeable tremors, especially in his right hand, and he was moving into a PD shuffle with stooped posture. Iris said he also had been exhibiting signs of the typical “Parkinson’s mask” in facial expressions.
“When Dr. Poetschke told us about the program, we had to wait for Lynn to finish the certification, so Bob Leffler put him into a program that Carter Rehab already had in effect. Lynn said that program helps “beef up” those who will then move into LSVT Big and Loud.
“The more traditional program can build endurance and boost their confidence and balance,” she said. LSVT is high amplitude with big movements — and it requires a good deal of concentration and energy, if Dick is any example. On a recent Thursday, Dick shared pages of writing with his therapist, demonstrating improvements he’d made, having progressed from an illegible scrawl before getting treatment.
“He was able to fill out his own voter absentee ballot,” said Iris. “I offered to write in the return address, but he did that himself. It’s the daily things and there’s been a phenomenal improvement since we’ve been coming here.”
The treatment dosage is four one-hour sessions a week for four weeks, for 16 treatments. Dick was about halfway through the program. Lynn also had him doing exaggerated arm movements while seated in a chair, and then some “big” stepping motions, including striking a “ta-da” theatrical pose for several repetitions.
He was Lynn’s first client for the program, but it’s now grown to include about five others, each at different stages of PD, notes the therapist. She said the program includes a lot of self-monitoring, asking the patients how they feel at certain stages.
“It’s been a good workout for me, and I’ve learned a lot,” said Dick. Videos were taken at two of the sessions and then he, Iris and Lynn viewed them. “It’s much easier that way for me to see what I’m doing incorrectly and then Lynn helps me work through those things.”
“There’s not only the physical benefit, but we’re seeing mental benefit as well,” said Iris. She said her husband was in quite a bit of denial of his PD at first, but has learned so much from the program — things that are carried over to everyday life. “All I had to say one day when he was cleaning the pool was what’s on the sign (in the room): “Big and Loud.”
“Homework is essential,” said Dennie. “It takes those cues on a regular basis to help them keep making the effort, but what a difference it can make. For me, with 20 years as a therapist, it’s like I have been born again into therapy. It’s one of the most gratifying things I have done, I have to tell you.”
Dick and Iris have also become cheerleaders for the program, which may include a support group component for those who complete the 16 sessions. They also continue to encourage Carter Rehab to get more therapists certified because they believe so much in the program and its visible results.
“I can’t begin to tell you the remarkable change in Dick,” said Iris. “Lynn is very gentle in criticizing and correcting, but she doesn’t let him get away with much.”
The trio emphasizes that it is not a cure, but can deter progression and add to the quality of life. Dick will also accompany his therapist to the Parkinson’s support group soon to talk about his successful experiences.
“I have been the guinea pig for this program,” he says with a smile. “It’s kind of like show and tell.”
“He’s an inspiration to others with Parkinson’s,” said Dennie. “The sooner a patient is diagnosed, the greater impact it will be because they may not have yet developed some of the symptoms, or they haven’t taken hold. But progress can still be made, even later. We’ve already seen that.”
Taken from the Parkinson’s News Update Oct 2010 Northwest Parkinson’s Foundation


The Practice of "Speaking LOUD" and "Moving BIG"
By Lorraine Ramig, Ph.D., CCC-SLP, Cynthia Fox, Ph.D., CCC-SLP, and Becky Farley, Ph.D., PT
"If you don't talk loud enough - people stop listening."
"If I have no voice, I have no life."
These are direct quotes from two individuals who live with Parkinson disease (PD). They reflect the devastating impact that a speech and voice disorder can inflict on the quality of a person's life.
These two are not alone. Research shows that 89 percent of people with PD experience speech and voice disorders, including soft voice, monotone, breathiness, hoarse voice quality and imprecise articulation. As a result, people with Parkinson's report that they are less likely to participate in conversations, or to have confidence in social settings, than healthy individuals in their age group.
For years, speech and voice disorders in people with PD were resistant to treatment. The effects of conventional treatments - whether medical or surgical - were neither significant nor lasting. The recognition that speech therapy could be tailored to the specific problems of the Parkinson's patient led to the development of a method aimed at improving vocal loudness: the Lee Silverman Voice Treatment ("LSVT® LOUD") method. This technique has helped many individuals with Parkinson's and speech problems, giving them new hope for improved communication for work, family and social activities.
Speech and voice disorders in PD
There are several reasons why people with PD have reduced loudness, monotone and hoarse, breathy voice. One is directly related to the disordered motor system that accompanies Parkinson's, including rigidity, slowness of movement and tremor. For example the inadequate muscle activation that leads to bradykinesia (slow movement) and hypokinesia (small movements) in the limbs can also trigger a speech disorder. For speaking, the problem with muscle activation can result in reduced movements of the respiratory system (reduced breath support), larynx (reduced vocal loudness), and articulation (reduced clarity of speech).
Another cause of speech and voice impairment in PD is a deficit in the sensory processing that is related to speech. Clinical observations suggest that people with PD may simply not be aware that their speech is getting softer and more difficult to understand. When "soft speaking" people are told of this, they will often reply "No! My spouse complains all the time, but he/she needs a hearing aid!" Furthermore, if people in this situation are asked to bring their voice to normal loudness, they will often complain that they feel as though they were shouting, even though they are perceived by listeners to be speaking normally.

A third cause of this condition is that people with Parkinson's may have a problem with "cueing" themselves to produce speech with adequate loudness. Individuals with PD can respond to an external cue (e.g., an instruction from someone else to "speak loudly!"), but their ability to cue themselves internally to use a louder voice is impaired. These problems can be frustrating both for the person and for their families. Patients feel that they are speaking loudly enough and do not understand why people keep asking them to repeat. And because the speech loudness responds to external cueing - sometimes soft, sometimes normal - the family may feel that the patient can be louder and clearer if they would only try harder.
These motor sensory and cueing problems have made people with Parkinson's particularly resistant to speech treatment. The conventional wisdom for years has been that people with PD can improve their speech during the speech therapy session, but the improvement "disappears on the way to the parking lot." As a result, conventional speech therapy has not led to sustained benefit, and has not been considered a valuable addition to the treatment of Parkinson's.
Speech therapy: LSVT® LOUD
"My voice is alive again!" - A person with Parkinson's from Denver, CO
Over the past 15 years, studies supported by the National Institute for Deafness and other Communication Disorders (NIDCD) of the National Institutes of Health have demonstrated that LSVT® LOUD is an effective speech treatment for people who live with PD. Those who have used it have improved their vocal loudness, intonation and voice quality, and maintained these improvements for up to two years after treatment. Recent research studies have also documented the effectiveness of this therapy in meeting the common problems of disordered articulation, diminished facial expression and impaired swallowing. In addition, two brain imaging studies have documented evidence of positive changes in the brain following the administration of the therapy.
LSVT® LOUD improves vocal loudness by stimulating the muscles of the voice box (larynx) and speech mechanism through a systematic hierarchy of exercises. Focused on a single goal - "speak LOUD!" - the treatment improves respiratory, laryngeal and articulatory function to maximize speech intelligibility. It does not train people for shouting or yelling; rather, the treatment uses loudness training to bring the voice to an improved, healthy vocal loudness level with no strain.
The program is administered in 16 sessions over a single month (four individual 60 minute sessions per week). This mode of administration - much more intensive than is the case with conventional programs - is consistent with theories of motor learning and skill acquisition, as well as with principles of neural plasticity (i.e., the capacity of the nervous system to change in response to signals), and it is critical to attaining optimal results. In addition to stimulating the motor speech system, the treatment incorporates sensory awareness training to help individuals with PD recognize that their voice is too soft, convincing them that the louder voice is within normal limits, and making them comfortable with their new louder voice.
Patients are trained to self-generate (that is, internally cue) the adequate amount of loudness to make their speech understood. While LSVT® LOUD has been successfully administered to individuals in all stages of PD, it has been most effective among those who are in the early or middle stages of the condition.

Physical/Occupational Therapy: LSVT® BIG
Recently principles of LSVT® LOUD were applied to limb movement in people with PD (LSVT® BIG) and have been documented to be effective in the short term. Specifically, training increased amplitude of limb and body movement (Bigness) in people with PD has documented improvements in amplitude (trunk rotation/gait), that generalized to improved speed (upper/lower limbs), balance, and quality of life. In addition, people were able to maintain these improvements when challenged with a dual task. LSVT® BIG can be delivered by a physical or occupational therapist. Therapy is delivered 4 days a week for 4 weeks; treatment sessions are one hour, individual 1:1 therapy. This protocol was developed specifically to address the unique movement impairments for people with Parkinson disease. The protocol is both intensive and complex, with many repetitions of core movements that are used in daily living. This type of practice is necessary to optimize learning and carryover of your better movement into everyday life!
The extension of this work to a novel integrated treatment program that simultaneously targets speech and limb motor disorders in people with PD (LSVT® BIG and LOUD) has recently been developed. Results from pilot work revealed all pilot subjects (n=11) with PD increased vocal loudness and improved gait. This whole body, amplitude-based treatment program (LSVT® BIG and LOUD), may allow for essential simplification of rehabilitation approaches for people with PD. This program is undergoing further development and testing.

How to get LSVT® LOUD
LSVT® LOUD is now a globally standardized treatment, and there are speech therapists in 32 countries around the world who are trained and certified by LSVT Global to deliver the treatment protocol in a standardized and tested way.
If you are experiencing any changes in your speech or voice, be sure to tell your doctor. Ask for a referral and a prescription for a speech evaluation and treatment. If you have not noticed changes in your speech, but a spouse, caretaker, or friend has - pay attention to their comments. One aspect of the speech disorder is that the person with PD is often "unaware" of the changes in speech or voice. The sooner you obtain a speech evaluation and start speech therapy, the better.
Speech therapists work in a variety of settings, including hospitals, out-patient rehabilitation centers, and private practice offices. To locate one in your area, contact the American Speech-language and Hearing Association (ASHA) www.asha.org, or find an LSVT-certified speech therapist by visiting www.LSVTGlobal.com.
Ideally, you should see a speech therapist face-to-face for a complete voice and speech evaluation and treatment. However, if a speech therapist is not available in your area, LSVT® LOUD is now being offered in select states via internet and webcam technology. The speech therapist interacts with you in your home or office "live" through your computer screen (LSVT® eLOUD).
Speech disorders can progressively diminish quality of life for a person with Parkinson's disease. LSVT® LOUD empowers people with PD to participate in their treatment in fundamental ways and to gain control over one important and burdensome aspect of their PD - the ability to communicate. The earlier a person with PD receives a baseline speech evaluation and speech therapy, the more likely he or she will be able to maintain communication skills as the disease progresses. Communication is a key element in quality of life and can help people with PD maintain confidence and a positive self-concept as they deal with the challenges of the disease.
How to get started in exercise or therapy programs
For therapists certified in LSVT® BIG or more information go to www.LSVTGlobal.com

• Ask for referrals to physical/occupational therapy
• Go to a gym/trainer
• Tai Chi, Yoga, Dance, Swim, Bike/Spin
• Exercise at home or group
• Exercise Videos:
• o The ART of Moving™ - John Argue Method www.parkinsonsexercise.com
  
• o Motivating Moves www.motivatingmoves.com

Start exercising NOW - as soon as possible. Physicians rarely refer their patients to health and fitness programs at diagnosis because medications are very effective early on at alleviating most of the symptoms and patients experience little change in function. Yet, according to a recent survey, it is at the time of diagnosis that patients often begin to consider lifestyle changes and seek education about conventional and complementary/alternative treatment options. Thus referrals to exercise, wellness programs as well as physical/occupational therapy would be best initiated at diagnosis, when it may have the most impact on quality of life.
Dr. Ramig is a Professor at the University of Colorado-Boulder, Senior Scientist at the National Center for Voice and Speech (Denver), Adjunct Professor, Columbia University, New York City. Dr. Fox is a Research Associate at the National Center for Voice and Speech in Denver. Dr. Farley is an Assistant Research Professor at that University of Arizona. This work was funded, in part, by research grants R01 DC001150 and R21 NS043711 from the National Institutes of Health.
Disclosure Statement: Dr. Ramig receives a lecturer honorarium and has ownership interest in LSVT Global, LLC. Dr. Fox receives a lecturer honorarium and has ownership interest in LSVTGlobal, LLC. Dr. Farley received consulting fees and lecture honorarium from LSVT Global, LLC
taken from the LSVT Global website.

October 2010

October 21 Mr. Fred Taube visits again. This trip he will not only talk about the latest developments in Medicare and Medicaid, but he’ll have information on how the new healthcare program will affect both our health and our pocketbook.

November 18 Mrs. Betsy Van Markwyk, Parkview Home Health Services, will be bringing physical and occupational therapists and a physical therapy assistant for a discussion and demonstration of the Lee Silverman Voice Training 'Big" Program. (LSVT - Big) Come learn about large movement exercise to help you with balance and coordination,



September Support Group Meeting

Dr. Vargas, Chiropractor, spoke to us about acupuncture and PD.
Acupuncture looks to find blockages of electrical impulses that run along any of twelve meridians. (channels) Each meridian (channel) is related to and named after an organ or function of the body. Ex: lung, kidney, gall bladder, stomach, spleen, heart, small/large intestine, urinary bladder, etc. When electrical impulses run along these meridians, the body is healthy and balanced. If the electrical impulses become blocked or weakened, he result can be ill health.
To restore balance in these electrical impulses, needles are placed at points on the body to redirect/counteract the electrical imbalance.
Acupuncture then releases pain relieving peptides that are naturally produced in the body to combat pain. The acupuncture points are close to the body’s surface where there is greater electrical conductivity. Tissue known as fascia connect various points on the body and allow electrical impulses to travel through the body.
Finding impulse blockages can correct electrical flow and increase the quality of life.
Acupuncture has been around over 5000 years. It doesn’t just treat symptoms. In fact, sometimes needles are placed in the skin in an area connected to, but not necessarily near, the symptoms, and/or the area out of balance.
Acupuncture needles are almost as thin as strands of hair, and you only feel a pinch as they enter the skin.
As a chiropractor, Dr. Vargas incorporates a variety of methods (herbs, supplements, massage, alignment, etc.) to help heal the body.
As a sidebar – Medicare does not cover acupuncture.
Remember, everyone is different and treatment may vary in techniques used, and length of treatment time. Result in patients may differ as well. Treatment early on, after the discovery of an illness, gives a patient a better chance for completely restored heath and balance.
Treatments start with an evaluation ($150) and then up to twelve follow-up appointments, ($65 each) depending upon patient needs. Some patients may return for later follow-up appointments monthly, bi-monthly, or even quarterly to maintain their health.




A NOTE FROM DAN SPANGLER

This is a reminder for many of you who will be changing webmail addresses because of the Verizon sale to Frontier Communications…
When your change has taken place, please email Pati Adams (plathyme@msn.com) or me, Dan Spangler (dspangler16@frontier.com) at the web address listed behind our names. Please inform us of your new web address.
We want you to continue to receive your email copy of our newsletter, and other communiqués in a timely fashion, and without interruption.
Let this reminder also serve to encourage you to inform other important contacts of your webmail address change. (Bank, insurance, family, friends, and others you may have listed in your address books, both hardcopy and/or electronic.


SENIOR INFORMATION FAIR

On Thursday, September 16, we sponsored a booth at the ACPL Senior Information Fair. The day was very productive. We made over fifteen serious contacts sharing about the support group and all we do for Parkinsonians, in the area. We also had the opportunity to network with eight different contacts regarding future program possibilities for the group; speaking engagements to spread the word about Parkinson’s; and many other ways to share FWPSG with people in the area.
A special “Thanks” to Nancy Brown, Tom and Liz Haley, Dick and Barb Hill, Bill and Muriel Hunt, Ruby Spangler, and Bonnie Tarr, for their efforts in staffing the booth. Also to Duane and Pati Adams for constructing, and setting up our booth. Without all of this generous help, we never could have had the success we did.
THANKS, ALL!


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. Volunteer Parkinsonians, with a caregiver, will attend all three concerts free of charge. Each Parkinsonian 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.

Currently we are looking for participants, and suitable dates probably in late October and early November. If interested, call, or email Dan Spangler. (260-486-4893)(dspangler16@frontier.com)

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.



CAREGIVERS' CORNER

Caregiving, whether it is for a spouse, parent, relative or friend, is never an easy job to do alone, no matter what your age or background. The care of the ill person along with assuming responsibilities for household and family chores can quickly become overwhelming even to the most efficient and organized caregiver.

It is estimated that at any one time there may be over 50 million family caregivers in the United States who regularly provide care for a chronically ill or aging family member. That number is guaranteed to grow as the baby boomers themselves become older and rely on others for the care that many of them are now providing.

Many communities have support group meetings or classes for caregivers. One of the most difficult things to do at times is to arrange to get to those meetings. For those with computers and the ability to use them, there are many new websites which have emerged that enable you to get information, education, and connect via chat or message boards with others who share the same circumstances or problems.

One website that is particularly helpful is www.familycaregiving101.org. This site was developed through the partnership of the National Alliance for Caregiving and the National Family Caregivers Association. The site is designed to provide caregivers with the basic tools, skills, and information they need to protect their own physical and mental health while they provide high quality care. It is also a place for family caregivers to return again and again as new challenges arise and the level of caregiving changes.

Advertising messages, created with the assistance of family caregivers themselves, assure caregivers across the U.S. That they are not alone, and encourage caregivers to take better care of themselves and their loved ones by visiting the site and asking for help. The site contains a message board, news on public policy and media regarding caregiver issues, checklists and a manual for preparing for a caregiving experience, information to prepare you for communicating with the health care industry and insurance companies to secure the needs for your loved one and yourself, and a wealth of other articles about the feelings and experiences of family caregivers and the resources available to them.

Even if your caregiving situation limits your ability to get outside your home, a while world of information is available at your convenience through this and other internet websites. Being better informed and making the connection with others through the forums or simply reading the questions and answers of others will help alleviate the feeling of isolation that often occurs on this journey. by Ed Gatke


TIPS TO MAKE YOUR LIFE BETTER
by Ed Gatke

What you don't know can hurt you. Most people with Parkinson's (PWP) take multiple medications, and they are sometimes prepared by a caregiver or another person. When the PWP takes his 3:00 PM pills he seldom looks at them and says, “one Requip, one Sinemet, one Comtan.” He usually says,”three pills.” After a while things seem to be all the same. Take time to know what it is you are taking, how much of it you are taking, and what is its purpose or what is it good for. It is the safe thing to do, and it is another way that you can be responsible for managing your Parkinson's for as long as you can.

Most PWP take more than one medicine. There are different ideas about how to organize the medicines so that we get the right pills at the right time every time. One idea that works for some is to use one or more colored indelible ink markers to label the containers (Actually, one color will do the trick.) If you get all your meds from one pharmacy the bottles look alike and the print is often small, hard to read. You can use colored markers to “color code” each medication bottle. Use the same color on the bottle and the cap. Then when you get a new supply use the same color as the one before it had. That way when you fill the daily pill organizers for a week or two weeks, it is easier to tell what you have already opened and what still needs to be put into the cases. It simplifies the process. The colors take away that “they all look alike” confusion. The trick is to ALWAYS have the correct pills in each time of day slot. The color coding gives us assurance that we have organized and distributed the pills correctly.

As our progression increases PWP have a greater need for medication both in quantity and frequency. The uniqueness of Parkinson's calls for exacting treatment. Each day when we wake up we have the greatest need for medications and the least ability to obtain it.

We should prepare and lay out our meds and other needs when we are “up” and have some or more control of our actions. Thus the need for getting things prepared carefully the day before while we are “up”. It is helpful for us to find as many aids to help as we can. Examples include ideas like keeping individual packets of crackers in handy places to assist when something (usually a pill) becomes lodged in our throat. Or, keeping water nearby in a plastic container or one with a lid to avoid spills when it is time for our meds. Or making a small cut with scissors in those difficult to open individual pill packets; then, when it is time to take the pills they are more easily opened.

If you have ideas on this subject, won't you share then with the rest of us? We welcome your ideas. Contact Ed Gatke at ektag@comcast.net with your ideas.


Taken from the News-Sentinel at fortwaynenewspapers.com
The number of Medicare plans and their subtle differences make signing up daunting
By Jennifer L. Boen
Mary Rogers is not yet 65, “but it's coming, and you have to be prepared,” she said. Rogers, who turns 65 next year, is referring to signing up for Medicare and choosing a Medicare Part D prescription drug plan. On Saturday, the new enrollment period for Part D begins. People already on a plan must re-enroll in a plan for 2009 by Dec. 31.

Rogers has a multifaceted approach to assessing which drug plan will best suit her down the road. She met with Donna Cusick, director of development for the Allen County Council on Aging, who helped Rogers enter the drugs she takes into the Medicare-PartD.com Web site. The site lists all 2009 drug plans for each state and allows consumers to do a comparison based on their needs. She plans to have her son-in-law, a drugstore manager, check the store chain's Part D database for which Indiana option is best for her.

As Medicare enters the third year for prescription drug coverage, new rules on how those plans can be marketed are in effect. One major change: no more door-to-door sales or marketing of Part D and Medicare Advantage plans. The latter are plans in which the beneficiary opts out of traditional Medicare and enrolls in a private Medicare-approved plan that offers medical and drug coverage.

“The regulations give insurers … guidance on what types of marketing activities are acceptable and what types are not acceptable,” said Kerry Weems when the new rules were unveiled. Weems is acting administrator of The Centers for Medicare and Medicaid Services (CMS), which oversees Medicare.

Since the program began, Medicare has used “secret shoppers,” people who pose as prospective purchasers and who listen to insurance agents' sales pitches, review printed and broadcast ads, and read through forms for clarity and accuracy.

Last year's secret shoppers uncovered three insurance organizations that were not following federal guidelines. This year, CMS has tripled the number of secret shoppers.

“We think it's a good thing they're cracking down on the rather loosey-goosey ways,” of marketing Part D, said Melissa Durr, CEO of the Indiana Association of Area Agencies on Aging (IAAAA). The agency is a resource for people wanting information on Medicare plans and other services for older adults and people with disabilities.

One of the biggest areas of confusion has been with what CMS refers to as MA-PD, or Medicare Advantage Prescription Drug Plans. Some people purchased the plans because of the great drug coverage, but failed to read or understand the fine print. Some medical benefits covered under traditional Medicare are not covered under MA-PD plans. For example, rehabilitation services after breaking a hip or having a stroke may not be covered in a long-term care facility. Traditional Medicare automatically covers at least the first 20 days, sometimes more, when a person on Medicare goes from hospital to nursing home. That is not necessarily the case for MA-PD.

“You've got to be a smart consumer,” said Rebecca Baker, a projects manager at IAAAA, comparing some plans to buying a cell phone “with all the bells and whistles you may not need.”

On the other hand, for the person who may need hospitalization in the coming year, who takes a lot of medications and has one or more chronic health conditions, some MA-PD plans, despite higher premium cost, are better. They may cover the infamous Medicare “doughnut hole.”

“There's no way to get around the doughnut hole,” Baker said. That term refers to the situation in which the beneficiary has reached a plan's initial out-of-pocket co-pays/deductibles. If expenses continue, the person must reach the next threshold before the plan kicks in again, which is why some consumers would fare better with an MA-PD plan, even if the premium is higher. She cautions that plans vary, and people must do their homework.

Discerning the best plan has been easier as Part D continues, said Fred Taube, a volunteer counselor with the Indiana Senior Health Insurance Information Program, or SHIIP. SHIIP counselors don't sell plans. In fact, Taube said, “We're precluded from recommending them.”

In Indiana, 48 Part D and 46 Medicare Advantage plans are available for 2009, said Taube, who is glad to see the new marketing regulations. He has heard of free meals, gift cards to stores for people who purchase a plan, and aggressive marketing near pharmacy counters or near the front door of a store. None of those tactics is allowed this year.

In the first year for Part D, the program was besieged by complaints on lack of phone access to counselors and inaccurate information disseminated on the 1-800-Medicare line. Improvements have been made and, according to an April announcement by CMS, an independent survey of beneficiaries showed a greater than 85 percent satisfaction with Part D.

Yet the Journal of the American Medical Association (JAMA) earlier this year reported lack of understanding of Part D continues. Researchers also found while non-adherence to taking medications as prescribed because of cost of the drugs decreased after Part D took effect, among beneficiaries who are the sickest, little or no improvement in non-adherence was found.

And while fewer hang-ups at the Medicare Part D help line are being reported, and the new marketing regulations will enable consumers to get less-biased information, signing up “is still a grueling process.

More Information

Enrollment
From Nov. 15 to Dec. 31, Medicare beneficiaries can enroll in the Medicare Prescription Drug, or Part D, plan. Waiting until the last part of December could delay coverage. To access a listing and costs for all the Medicare Part D and Medicare Advantage plans available in Indiana go to this Web site: www.medicare-partd.com

Who can help:
Free access to Part D counselors:
SHIIP (Senior Health Insurance Information Program) - call 373-7952 to set an appointment.
?9 a.m.-2 p.m. Mondays and Fridays, St. Joseph Hospital Senior Circle office, 900 Broadway
?9 a.m.-2 p.m. Tuesdays at 2120 Carew St. in the Parkview Foundation office building
?9 a.m.- noon, first and third Tuesdays of the month, Parkview Health Corporate Offices, 10501 Corporate Drive, at northeast corner of Interstate 69/Dupont Road.
?9 a.m.-noon first Thursday of the month, Fort Wayne Parks and Recreation Community Center, 233 W. Main St.
Aging & In-Home Services of Northeast Indiana - call 745-1200 to set an appointment.
?Call 745-1200 or 1-800-552-3662 to set an appointment; offices are at 2927 Lake Ave.
Allen County Council on Aging
?233 W. Main St.; phone 426-0060; offers referral sources and minimal Part D counseling for uncomplicated cases.
Medicare Part D help line
?Call 1-800-MEDICARE, or 1-800-633-4227, 24/7 for assistance in either English or Spanish.
National Council on Aging
?Go to BenefitsCheckupRx.org to access Part D information and other health care services for older adults, including information on Part D plans for low-income and resources for people who cannot afford their drugs during the “doughnut hole,” non-coverage period of Part D for some people.
Marketing no-nos for Part D
Among new federal rules governing marketing of Medicare drug plans:
?No discounted or free meals to potential buyers.
?Gifts cannot exceed $15; gifts cannot be offered only to those who purchase the marketed plan but also to inquirers who do not buy the plan.
?No cross-selling of non-health care products - life insurance or homeowners' insurance, for example, when marketing Part D or Medicare Advantage plans.
?No marketing at educational events.
?All agents/brokers must be state licensed.
?When information is provided at a venue such as the lobby of a hospital, the sale cannot take place at that time; a future appointment must be set.

Source: Centers for Medicare and Medicaid Services




5 Ways to Lower Your Costs During the Coverage Gap
Consider Switching to Generics or Other Lower-Cost Drugs
You may wish to talk to your doctor about the drugs you are currently taking to find out if there are generic or less-expensive brand-name drugs that would work just as well as the ones you're taking now.

Cost savings information through the use of mail-order pharmacies, generic or less-expensive brand-name drugs is also available in the Prescription Drug Plan Finder section of www.medicare.gov
Explore National and Community-Based Charitable Programs
National and community-based charitable programs (such as the National Patient Advocate Foundation or the National Organization for Rare Disorders) may have programs that can help with your drug costs. Information on programs in your area is available on the Benefits Checkup website.
Look into Pharmaceutical Assistance Programs
Many of the major drug manufacturers are offering assistance programs for people enrolled in Medicare Part D.
You can find out whether a Patient Assistance Program is offered by the manufacturers of the drugs you take by visiting our Pharmaceutical Assistance Program site.
Look at State Pharmaceutical Assistance Programs
There are many states and a territory offering help with the paying of drug plan premiums and/or other drug costs.
You can find out if your State has a program by visiting our State Pharmaceutical Assistance Program site.
Apply for Extra Help
If you have Medicare and have limited income and resources, you may qualify for extra help paying for your prescription drugs. If you qualify, you could pay between $1-$6 for each drug.
Contact Social Security by visiting www.socialsecurity.gov or by calling 1-800-772-1213. TTY users should call 1-800-325-0778
For additional information, you can review the Bridging the Coverage Gap (PDF 132.71 KB)

September 2010

September 16 Dr. David Vargas, D.C., will share his views and experiences with acupuncture and its effect on patients with Parkinson's disease.

Oct 21 Mr. Fred Taube visits again. This trip he will not only talk about the latest developments in Medicare and Medicaid, but he’ll have information on how the new healthcare program will affect both our health and our pocketbook.

November 18 Mrs. Betsy Vanmarkwyk, Parkview Home Health Services, brings a physical therapist with her for a discussion and demonstration of the Lee Silverman Voice Training 'Big" Program. (LSVT - Big) Come, learn about large movement exercise to help you with balance and coordination.


August Support Group Meeting

Our August meeting was ”Caring and Sharing”. A special THANK YOU to Muriel Hunt and Joan Garman for facilitating the caregivers meeting and Ed Gatke for his efforts with the Parkinson’s meeting. To preserve privacy for those contributing, there are no names, and topics have been mixed up so, in some cases, it is more difficult to determine from which meeting they came. Thank you to all those who were wiling to contribute. The total attendance including both meetings was fifty-four.

Topics included and discussed were:

Handling challenges
The need to ask questions of other caregivers and Parkinsonians.
There is a definite plus for having attended either session.
Concerns about deep brain stimulation were voiced.
Evening caregiver group was discussed and survey taken.
There seems to be there is noticeable personality change in Parkinsonians.
Weight gain is a problem with Parkinsonians.
There is a time problem for caregivers to get “it” all done.
PD meds are producing some unusual desires in Parkinsonians.

There was a discussion of medication side-effects. Dementia is as important a topic as other symptoms. (tremor, rigidity, etc.)

What is the relationship between PD and Orthostatic Hypotension?(severe blood pressure drop)

Several book titles were discussed and one in particular:
I’ll hold Your Hand So You Won’t Fall, by Rashida Ali, Muhammad Ali’s daughter.

We must not forget to fill out the info on our hospital forms so our hospital stay is the best it can be. Type in fwpsg.org for access.

Thanks to Turnstone for providing such great fitness, aquatic, and exercise care or Parkinsonians. All for $30/mo.

Parkinsonians should participate in ongoing research if they have a chance.
Contact PD Trials .org.



A NOTE FROM DAN SPANGLER
September 16, Dr. David Vargas, D.C. will be our featured speaker at support group. He brings with him many yeas of experience in natural healing processes, including detoxification, acupressure, acupuncture and a variety of ways to heal natural healing blockages. We all are aware of the traditional methods our doctors have used including prescription drugs, surgeries, etc.
We have had several programs that expose molecular or holistic approaches to healing or bodies. Lest we not forget programs on Tai Chi, several types of exercise (John Argue, Alexander Technique, LSVT Big, and Tall), herbal and natural remedies (multi-vitamins, Piracetam for your memory, C-neutral for cellular detoxification, Glutathione to help free your body of anti-oxidants and toxins, and Co Q 10 for improved muscle function)
Not every method, medicine, technique, nor therapy works the same for everyone. YOU OWE IT TO YOURSELF TO INVESTIGATE ALL POSSIBILITIES. Never give up looking for a cure, treatment, improvement. Take charge of you health. Don’t close the door on any possibility. Be there on September 16th to hear about some additional ideas. You deserve it!
***************
Caregivers filled out a questionnaire about a caregivers group at the August meeting. We are interested in as much feedback as possible as we proceed with our plans for an "official" caregivers group. If you have not already done so, please take some time to give us your input. Mail the completed form to Dan Spangler, 8302 Beacon Ridge Place, Ft. Wayne, IN 46835, or bring it with you when you come to the September support group meeting. Thanks for letting us hear your voice in matters of this importance. We are working to improve your support group and you need to be a part of his progress.

CAREGIVER PROGRAM QUESTIONNAIARE
Circle your answer Name Optional____________________________--
1. I WOULD WOULD NOT be interested in a program for PD caregivers.
2. I could attend a meeting if it were held in the AM PM ANYTIME
3. I would prefer meetings be held WEEKLY MONTHLY OTHER____________
4. I like the caring and sharing program just the way it is. YES NO
5. I need care provided for my spouse in order to attend meetings YES NO
6. I would bring my spouse to exercise class knowing that there is an
evaluation and small charge for their participation YES NO
7. I prefer informal caregiver meetings with open discussion of caregiver issues
YES NO OTHER____________________
8. I prefer topical meetings with presenters YES NO OTHER______________
9. I would prefer a combination of the two with open discussion and some
topical presentations. YES NO OTHER___________________
10. Would you be interested in a leadership role in a caregivers group?
WOULD WOULD NOT Name_____________________________

Comments:


TIPS to make your life better
From the “Not everything works for everyone department”...
I have a hard time dealing with a large bath towel after my shower, and I have discovered that what does work well for me is to use two hand towels instead of a bath towel. I get most of the water off my body with the first towel and finish the job with the second one. The hand towel is much easier to handle, it doesn't create any more laundry, and it gets the job done.
At a time when you are feeling fairly well, review and complete legal documents such as pension, will, power of attorney and living will. You and other family members will thinking more clearly when there is no urgency.
Over-the-bed tables (like in a hospital room) are great not only for when in bed, but also when in a chair. They are adjustable and some are built with a tray underneath for storage of eyeglasses, pens, paper, etc. Some also come with a built-in “book holder” on top the table to make it easier to read; this can be especially helpful if a tremor makes it difficult for you to hold reading material.
If you haven't already taken care of it, now might be a good time to prepare a wallet card that identifies you as a Parkinson's patient lest your symptoms be misinterpreted (aka misdiagnosed) in an emergency that leaves you incapacitated. The information on the card should include your primary care physician's name, the name of the physician treating your Parkinson's, and a complete list of the medicines you are taking, including their dosage. Of course, you will want to include your physicians' names, addresses, and phone numbers, including their after-hours phone numbers. You might want to think about doing at least the medicine list and dosage in pencil rather than ink because of the numerous changes that a lot of Parkinson's patients experience with their meds.
One other thing—carry your medical ID card between your driver's license and your insurance card. Emergency room personnel will stop searching your wallet after they find those two.
If you have a tip you would like to share with the rest of us please send it to ektag@comcast.net.You can also phone me at 260-484-6205.
Submitted by Ed Gatke


Labor was the first price, the original purchase-money that was paid for all things. It was not by gold or by silver, but by labor, that all wealth of the world was originally purchased. ~Adam Smith
There is precious little hope to be got out of whatever keeps us industrious, but there is a chance for us whenever we cease work and become stargazers. ~H.M. Tomlinson


PARKINSON'S DISEASE
Motor system disorders
- Tremor or trembling in hands, arms, legs, jaw, and face;
- Rigidity or stiffness of the limbs and trunk;
- Bradykinesia - gradual loss of spontaneous movement
- Postural instability or impaired balance and coordination

Etiology
Loss of dopamine causes the nerve cells of the striatum to fire out of control, leaving patients unable to direct or control their movements in a normal manner
Oxidation is thought to cause damage to tissues, including neurons
External or an internal toxin selectively destroys dopaminergic neurons

The Role of Dopamine
Dopamine is a catecholamine that functions as neurotransmiter involved in arousal level and motor activity. During sleep, dopamine levels decrease.

Mechanisms
- Oxidative damage
- Environmental toxins
- Genetic predisposition
- Accelerated aging

Major Symptoms
- Tremor - pill rolling
- Rigidity - cogwheel
- Bradykinesia- slowing down
- Postural instability

Other Symptoms
- Depression/Emotional changes
- Memory loss
- Difficulty in swallowing and chewing
- Urinary problems or constipation
- Skin problem
- Sleep problem

TCM Approach
- Acupuncture:
- Electrical Acupuncture
- Auricular Acupuncture
- Scalp Acupuncture
- Herbal Prescription
- Tui Na/ Acupressure
- Moxabustion
- Qi Gong Therapy

Acupuncture Treatment
- Acupuncture treatment based on stimulating the central nerve system to restore the medi-brain function.
- Promote thalamas and hypothalamas to release domamine.
- Influence of motor and sensory nerve transmitter to increase its function.

Auricular Acupuncture
- Stimulation of specific points in the car exerts therapeutic effects on those pars of the body with which they are correspond
- Examination of the ear will find sensitive points where associated body parts malfunction.
- It used in either diagnosis and treatment

Scalp Acupuncture
- MOTOR AREA
- SENSOR ATEA
- SPEECH AREA
- BALANCE AREA
- LIMB AREA
- TREMOR CONTROL AREA

Special Techniques to treating certain central nervous disease by stimulating the representative areas of the cerebral cortex.
Herbal supplement for Parkinson's Disease
Muscle relaxants:
1. Magnolia
2. Pueraria
3. Peony

Herbal Combinations:
1. Pinelia and Magnolia Combination
2. Pueratia Combination
3. Peony and licorice Combination

Pinellia and Magnolia Combination-Plus Qi regulated
- Pinellia 9gm
- Magnolia 9gm
- Paria Cocos 12gm
- Zingiberis 15gm
- Perilla Leaf 6gm
- Recommend to:
- Anxiety
- Depression
- Insomnia
- Dizziness
- Heavy sensation in the head
- Palpitation
- Obstruction in the throat
- "Sloshing" sound in the gastric area.

Pueraria Combination
- Pueratia 12g
- Ephedrae 9g
- Cinnamomi 6g
- Paeoniae 6g
- Zingiberis 9g
- Zizyphi 12pc
- Glycyrrhizae 6g
- Recommend to:
- Stiff neck and shoulder
- Body and joints achy
- Numbness of muscle and tendons
- Lack of perspitation

Peony and Licorice Combination
- Peoniae 12g
- Glycyrrhizae 12g
- Spasmodic pain of the arm and leg muscles
- Spasms in the rectal and abdominal muscles
- Abdominal pain
- Dysuria

Self-care Techniques
- Diet
- Nutrition Exercises
- Emotional Support

Diet
- Well-balanced, nutritious diet
- High protein diet may limit effectiveness

Food recommendation based on individual conditions
Nutrition
- Vitamin B6
- Vitamin E
- Vitamin C
- Anti-oxidant and deprenylslow the early symptomatic progression of the disease and delay the need for levodopa.

Taken from advancedacupuncture.com

Parkinson's Disease Blog
From Patrick McNamara, Ph.D., Former Parkinson's Disease Guide

Acupuncture for Parkinson's Disease?
Thursday August 27, 2009
For years now there have been reports that acupuncture improves Parkinson's disease symptoms including body posture, tremor, and rigidity. Now a recent study in the journal Movement Disorders demonstrates that acupuncture does indeed activate areas in the brain that are normally responsible for movement and that are typically not functioning normally in PD. Specifically the authors used functional magnetic resonance imaging to study brain effects of acupuncture at acupoint GB34—a site traditionally used to improve motor functioning. The investigators found that when the left GB34 acupoint was stimulated, brain activity in the putamen and the motor cortex-two key motor function areas that are impaired in PD, demonstrated a significant correlation with the degree of the enhanced motor function (a finger tapping task) associated with acupuncture treatment in the patients with PD. The findings indicate that acupuncture stimulation can consistently influence those brain regions that are known to be impaired in PD.
In short acupuncture may be construed as a form of deep brain stimulation via systematic stimulation of the skin. It may therefore one day prove to be an effective tool in the battle against PD.

Taken fromAabout.com – Parkinson’s disease


Creativity and Parkinson’s
Do you find that creative activities - such as painting, drawing, dancing, singing, making jewelry or playing an instrument - actually ease your Parkinson's disease (PD) symptoms?
You are not alone in your experience. Many people with PD report that creative endeavors temporarily relieve their symptoms.
The Creativity and Parkinson's Project exists to explore, support and encourage the therapeutic value of creativity in Parkinson's. This Project:

• Hosts a gallery of artwork by people with PD.
• Invites you to show your work
• Shares our artists' inspirational personal stories of courage and triumph.
• Welcomes all forms of creativity - including painting, drawing, photography, song, crafts, and more.
• Publishes an annual calendar featuring the work of 13 of our talented artists.

You can browse artwork created entirely by people living with Parkinson’s disease (PD) throughout the world. The gallery includes a variety of mediums of creative works - not just paintings, but also prose and poetry, photography, sculpture, crafts, dance and song. The gallery is located on the Parkinson’s disease Foundation website under ‘living with Parkinsons”’.
Many people with PD experience a temporary cessation of symptoms while engaged in a creative activity. The Creativity and Parkinson's Project is dedicated to exploring the reasons behind this, as well as promoting the therapeutic value of creativity in the treatment of Parkinson’s disease. It is our hope that visitors to this section will leave with a renewed sense of respect and understanding for the abilities of those living with Parkinson's disease.
If you have Parkinson’s and have artwork you would like displayed in the Creativity and Parkinson's Gallery, download a Consent Form and submit it with your artwork at www.parkinsonsdiseasefoundation.org.
Taken from the Parkinson’s disease foundation website

August 2010

Aug 19 – Caring and Sharing. What an opportunity to find out how other Parkinsonians and their caregivers are doing. We break out into two groups (PD’ers and caregivers) and share. Join us.

Sep 16 – Dr. David Vargas, D.C., will share his views with acupuncture and its effects on people with PD.

Oct 21 – Mr. Fred Taube visits again. This trip he will not only talk about the latest developments in Medicare and Medicaid, but he’ll have information on how the new healthcare program will affect both our health and our pocketbook.





July Support Group Meeting

Dr.Michael Munz, neurosurgeon, our featured speaker, talked to us about Deep Brain Stimulation Surgery (DBS). DBS type surgeries have been around for about seventy-five years. DBS surgery itself has been around since about the mid 1950’s. DBS is used to lessen tremors, rigidity, bradykenisia, and diskenisia.

DBS became more prevalent as a means to lessen the over medication of PD patients. It is a symptom reducer, not a symptom eliminator. DBS will not stop the progression of PD. After DBS fewer medications are needed, but cannot be stopped altogether.

Understand that DBS is not performed to address balance issues, postural impairment, speech problems, bowel irregularities, esophageal (swallowing) difficulties, or intellectual functioning.

In Indiana DBS surgery is done in two steps. The firs while patient is awake so the placement of electrode in the brain is most accurate. The second step is to implant the pacemaker and connect the electrode leads. The surgery targets three areas of the brain: the Thalamus, Sub-thalamic Nucleus, and the Globus Pallidus.

Once the surgery is complete, adjustments are made with the electric impulses to maximize DBS effectiveness. Most batteries are replaced after about six years, but some newer devices are rechargeable.

DBS is covered by insurance (Medicare and Medicaid included)

DBS is most successful in younger, healthier patients. But can be performed on patients and healthy individuals in their70’s and 80”s. Dr.Munz stated that patients with severe dementia, depression, heart problems, poor pulmonary function (lungs), or near death cancer are most generally NOT candidates for DBS.

Bruce Gardner, Medtronic’s representative, was on hand to answer questions regarding DBS hardware, etc. Bruce provides valuable insights in that he assists Dr. Munz during each DBS surgery.



Also at the July meeting were representatives of the Ft. Wayne Philharmonic: Our own Russ Eplett, plus Gregory Lopez, Administrative Assistant, and board members, Dr. Pamela Kelly, and Dr. Nancy Jackson. They are inviting interested members of the FWPSG to take part in their “Music in Medicine” project, to research the effects of music in alleviating medical issues in Parkinson disease patients. Attendance at live concerts (with spouse) and completion of a survey are the basic requirements. As soon as Purdue University places their stamp of approval (expected in September, 2010) on the project, specific information and direction will be forthcoming.

This provides us with yet another opportunity to have a part in researching to find a cure for our disease. Plan to participate!





Up and Coming Dates

Parkinson’s Disease Annual Symposium For Patients, Families & Friends
Saturday, October 2, 2010
1-5 PM Doors open at noon
Indy West Conference Center
(same location as last year)
402 N. High School Rd.
Indianapolis, IN 46214

For more information or to register,
contact Sheri: (317) 255-1993 or sheripaaci@sbcglobal.net

Your editor highly recommends the informative event listed above.



Rock Steady Boxing
Bar-B-Que!
Sunday, October 3, 2010
For more information:
www.rocksteadyboxing.org
Or call (317) 223-2970
North10th St.Rockville Rd. in Indianapolis.


Flyer provided to us by Leo G. Rafail, BSW Social Worker Indiana Parkinson Center for Care





A NOTE FROM DAN SPANGLER
Mark your calendar for September 16, 2010. It’s the Annual Senior Information Fair at the downtown ACPL branch.
This year we have elected to staff our own booth. We will need five “pairs” of volunteers to staff the booth, and make it successful. Time’s are as follows:

9:00 am – 10:00 am
10:00 am – 11:00 am
11:00 am – 12:00 n
12:00 n - 1:30 pm
1:30 pm - 3:00 pm

Again, you will be greeting booth visitors, answering questions about PD and the FWPSG, plus distributing literature. What a great way to spread the word. Sign up by calling Dan Spangler 486-4893, or responding at the support group meeting or exercise class.

Thanks to your willingness and support in these efforts. As a result more people than ever are learning about us, what we do, and how we can help.




TIPS TO MAKE YOUR LIFE BETTER
Some people with PD propel themselves forward when walking, so that they have difficulty stopping quickly enough to avoid walking into furniture or through a glass door. If this is a problem for the person you help, strategically arrange the furniture so you create soft landings, like the arm of an upholstered couch. Note: When considering this option, always consult the person with PD before arranging any furniture so that he/she does not lose familiarity with the surroundings.

Replace glass shower doors with a lightweight shower curtain for easier access to the shower, greater safety, and convenience.

Store daily use products like towels, dishes, food, medications, and cleaning supplies between waist and eye level; this will help you to avoid reaching and bending, which can throw you off balance and lead to falls.

Use “reachers” to relieve the strain of bending, stooping or stretching to pick up something off the floor or on a high shelf. Many different types of reachers are available; some models have pistol grips, others work like a giant pair of tongs, and some fold completely to take with you. The cost for these ranges from about $10 to $30 and can be purchased at home builders supply or drug stores.

Replace regular doorknobs with lever handles. They are easier to operate—just push down with your hand, arm, or elbow. Lever handles are especially helpful if you are carrying things in your hands and need to open the door. Purchase lever handles at hardware or home building supply stores. If you purchase the same brand as what you already have the store clerk can “key” the lock so you can continue to use the same key that you have been using for the doorknob.
Submitted by Ed Gatke




The Caregiver's Role

The role of a caregiver is usually one that a person must take on without any prior warning. It is a major change to anyone's lifestyle. A caregiver must be on-call twenty-four hours a day. They must always be on their toes. They must be organized, well informed and watchful. They must be very patient, helpful and warm-hearted towards their loved one's changing physical/mental condition. All this is difficult to master. A caregiver must also have inner strength and determination to carefully balance the new demands that lie ahead.

We hope the information in this section helps define the role of caregiver and sheds light on the importance of this role. It takes a special kind of person to care for an ill or disabled loved one.
The symptoms of Parkinson's disease vary.
It is important that caregivers understand that this disease affects different people in different ways. In other words, the symptoms won't always be the same in all patients.
Since there are such a wide variety of symptoms, caregivers should not jump to any conclusions if Parkinson's disease is suspected. Even if it is diagnosed, they should not expect a "worst!"
The early signs of Parkinson's disease are often subtle.
Some form of a tremor may be the first symptom noticed – but not always. Other early symptoms may include a patient becoming shier, or perhaps showing signs of depression.
A softer voice may be noted with some patients. In other patients, an early symptom might be that handwriting becomes harder to read (smaller or a bit scratchy).
Some patients have even complained of not being able to play golf or tennis as well as usual. They don't realize that this may signal the presence of Parkinson's disease.
Many patients who display the most common symptoms of Parkinson's never experience anything worse.
The most common symptoms of Parkinson's disease are tremor, muscle stiffness, slowness of movement, and/or sexual problems in men. Even with these symptoms being the most common, not all patients experience them.
In cases where these symptoms are present, the disease can be managed successfully for many, many years, especially with the help of prescription drugs. Often, patients taking these drugs may never experience the worst symptoms of Parkinson's.
Caregivers are strongly encouraged to go with the patient when visiting their doctor if Parkinson's disease is suspected.
The caregiver's view is often the most important link in helping the doctor make an accurate diagnosis. That's because some patients may not be able to notice – or may not be willing to admit – the first symptoms. Indeed, many patients may think (sometimes correctly, sometimes incorrectly) the symptoms are part of the aging process.
Also, because symptoms of Parkinson's disease may be hard to notice, it probably makes the most sense to have an evaluation performed by a doctor who routinely works with Parkinson's patients. At the very least, get a second opinion after an initial examination by a family doctor.
The symptoms that are the most difficult to manage usually happen in a small number of patients.
When they do occur, they tend to show up much later in the course of the disease. These more serious symptoms include patients having problems maintaining their balance, periods of extreme confusion or hallucinations, or more severe depression and/or withdrawal.
Caregivers may find it impossible to effectively take care of patients with these serious symptoms. In such cases, some form of professional assistance or nursing home support is generally recommended.
Pharmaceutical drugs have proven to be highly effective in treating Parkinson's disease and newer drugs make this form of treatment even more promising.
Most drugs available for the treatment of Parkinson's disease work to imitate the effect of dopamine in the brain. That is because low dopamine levels in the brain have been linked to Parkinson's disease. These drugs are made to "trick" the brain into thinking it is receiving dopamine. The brain's need for the chemical is then reduced. These drugs have few side effects – the most common are swelling and increased sexual drive (this could become a problem for the caregiver). If a patient has one or more of these side effects, the physician usually will try another drug.
Surgical options are also available for patients who do not respond well to drug therapy.
There is a broad range of therapy available for this disease, and research and development work continues. Caregivers have every reason to be hopeful and confident that an effective treatment will be available for their patient.
Caregivers need help too.
Providing 24-hour care for a patient suffering from any disease is a major responsibility. Caregivers must realize that they may feel anger, withdraw or depression from the pressure of such responsibilities.
Caregivers should be on guard and watchful for these symptoms in themselves. It is better to take steps to prevent them than let such symptoms affect their ability to care for the patient.
Caregivers need to make every effort to maintain a well-rounded, balanced schedule of social activities. And by all means, don't be shy about getting additional help in the house to assist with the caregiving.
The most effective caregiver is well informed, prepared and asks for help and support from all resources that are available!
We have provided links to a wide variety of support groups and educational web sites. In addition, your local "County Office of Aging," and even local religious groups, may be excellent sources of information, support and supplies.
Also, be sure that important documents such as a will, living will and emergency plans for children are updated and in place to your satisfaction.
Taken from myparkinson.org. Visit their website for further info.


Providing Care for Parkinson's Disease
"Constant reassurance that my loved ones are supportive, patient, caring, understanding, and loving is, I believe, my greatest asset and most secure source of happiness." Dwight C. McGoon, M.D., a Mayo Clinic surgeon with Parkinson's Disease
High-fashion thermos coffee mugs, electric toothbrushes, hand-held showerheads and, yes, satin sheets - these are just a few of the items that make life easier for a person with Parkinson's Disease. Read on to learn more about providing care for a Parkinsonian.
Take Charge of Parkinson's
Take an active rather than passive role. Learn all about Parkinson's Disease - its causes, symptoms and treatments. Find the most knowledgeable and experienced physicians and health professionals in your community. Physicians, Nurses, Neuropsychiatrists, Occupational Therapists, Physiotherapists, Dietitians, Speech-Language Therapists and Social Workers are just a few of the people who can help you with the many aspects of providing care for someone with Parkinson's.
A cure hasn't yet been found, but that doesn't mean there are no effective treatments for the symptoms of Parkinson's. If one approach to treatment doesn't work, insist that others be considered. Take charge.
Learn the course Parkinson's may take in the future and be prepared for changes in the level of care you will have to provide.
Parkinson's is life altering, not life threatening. This means life with PD will change. All the same pleasures are out there to be enjoyed, they just need a bit of modification. If your care recipient enjoyed running, some of the same enjoyment of the outdoors comes with walking. Look for versions of the same kinds of activities to keep your care recipient active, independent and interested in life.

Stress and Anxiety
The symptoms of tremor, rigidity and bradykinesia (abnormal slowness of movement) are made worse by anxiety, stress and pressure. Be a calming influence. Don't pressure your care recipient to speed up. The anxiety you create will make movement slower.
Depression
Up to 50% of Parkinsonians suffer from depression. Watch for signs of depression and get treatment for your care recipient right away. Depression can affect short-term memory and concentration that will aggravate Parkinson's Disease. There is a risk of suicide.
The signs of depression include:

• Sadness
• Suicidal ideas
• Sleep disturbance
• Fatigue
• Problems concentrating
• Weight loss or gain
• Appetite change (usually loss)
• Feelings of worthlessness
• Anxiety
• Irritability
• Apathy
• Unwillingness to socialize
• Loss of interest in sex and reduced performance

Depression and Parkinson's Disease share the symptoms of fatigue and anxiety. The trick is to sense an unexplained increase in these symptoms that may be caused by depression. Constipation
Parkinson's and its medications combine to make constipation a problem. Take preventive action to avoid a crisis that will need medical attention.
Increase fluid intake, especially in hot weather. Your care recipient should drink eight cups of fluid every day.
High-fiber foods are traditionally recommended to prevent constipation but these may cause intestinal gas and cramping that are not tolerated by an older person with Parkinson's. Instead of raw fruits and vegetables, nutritionists recommend dried fruits, hot prune juice, canned fruits and soft cooked vegetables. If you introduce bran or high fiber cereal into the diet, start slowly with small amounts and increase fluid intake.

Fatigue
Persons with Parkinson's have to pace their activities and take lots of rest breaks. It isn't lazy; it's smart.
When your care recipient is having a really good day, feeling well and full of energy, there will be a tendency to do too much. Gently remind him or her that overdoing it will mean exhaustion and inactivity for the next couple of days. Better to ration that newfound energy.
Irritability and Frustration
Everyday tasks take longer with Parkinson's. They may take even longer on bad days. Allow time for this. Don't rush. Respond with tact and humor, not irritability and frustration. Place yourself in the mind and body of your care recipient and imagine how irritated and frustrated he or she must feel.
If it's a bad day, set some activities aside for another day and do just what is possible and necessary. If you don't make these allowances, you create a stressful situation that aggravates the Parkinson's symptoms and may actually slow your care recipient even further. There's always tomorrow.

Pets
They are wonderful companions but be careful that they aren't surprise obstacles that cause tripping or falling.

Drugs
Be sure your care recipient's physician tells you about all the expected side effects of medications so you know what to expect. It doesn't hurt to ask your pharmacist for more information. Be able to recognize when side effects are becoming too severe or unpleasant and contact the physician.
Some medications may cause nightmares and vivid dreams. Taking medications a few hours ahead of bedtime may help. Reactions to the dreams may make the sleeper noisy and violent. The person with Parkinson's will sleep on while the rest of the household thinks war has broken out.
Hallucinations may be another side effect. Your care recipient may see small animals or children. Usually the Parkinsonian knows it isn't real but if he or she insists it's real, maybe you should pay attention. One family got a bit of a surprise. Their family member with Parkinson's insisted that there was a mouse in their home. No one believed her until she presented them with a dead mouse in a trap.
If your care recipient sees a number of physicians, make sure all physicians know the complete list of medications your care recipient is taking. This will help prevent unpleasant or dangerous drug interactions. It's a good idea to consult your pharmacist.
Be careful about botanical or natural remedies. Ask your physician for advice. These remedies may interact with the medications your care recipient is already taking.
Never change dosages without guidance from your physician.

Exercise
A well-designed exercise program can increase the benefits of Parkinson's medication, fight depression and promote an overall sense of well being.
Your care recipient will benefit from three types of exercise:

• Stretching and range-of-motion exercises to maintain joint and soft tissue flexibility
• Strengthening exercises to improve and maintain strength of abdominal and back muscles
• Aerobic exercises to aid cardio-respiratory fitness.

Prevent fatigue by pacing short exercise sessions throughout the day. Join in with your care recipient. It's good for you too.
Don't stick to a rigid schedule. Instead, help your care recipient exercise when medications are working well and movement is easier.
Urge your care recipient to be patient. The gains of regular exercise are not immediately obvious but they will come with time.
Exercise should be fun. Look for organized programs at local community or commercial centers. If there is a Parkinson's support group in your community, they may offer programs specially designed for your care recipient. It may be possible to combine exercise with some social activities that are so important in fighting depression and maintaining a sense of independence.
Walking
It's great exercise for you and your care recipient. Here are some tips that make it easier and safer for someone with Parkinson's.
Help your care recipient by encouraging him or her to stand up as straight as possible. Heads up - avoid looking at the ground. At home, remove unnecessary furniture and anything on the floor like loose rugs that could cause a fall. Avoid shoes with rubber or crepe soles. They can stick to the floor and cause a tumble. See a physiotherapist for tips on helping your care recipient if there are problems with starting, stopping or maintaining momentum when walking. Offer your arm as support but try to avoid hanging on to your care recipient. It's easier for a person with Parkinson's to maintain balance if he or she isn't pinned to your side.
To prevent falls, encourage your care recipient to consciously lift each foot. This strategy combats the foot drag that may come with Parkinson's.
When turning, a person with Parkinson's should avoid pivoting on one foot to change direction. Balance problems make this a dangerous maneuver that leads to falls. It works better to take several steps in a U-turn.
If your care recipient appears to freeze, feet glued to the floor or sidewalk, you can be sure that is exactly how it feels. Remain calm and quiet while he or she concentrates on getting going again. You can work together to find ways to overcome this temporary problem. Try rocking from side to side to get the feeling of moving again, or tell him or her to imagine stepping over a crack in the sidewalk or a small object immediately in front of one foot. You might try '1-2-3-go' or bending the arms and swinging them to set the rhythm for walking.

Make it Easier in the Kitchen
Here are some hints to encourage your care recipient to help out in the kitchen.
Be patient. People with Parkinson's move slowly and take longer to get things done. Allow extra time.
Use a microwave to shorten cooking times. This leaves more time for your care recipient to get food ready for cooking. It means less pressure to hurry.
Encourage your care recipient to sit rather than stand. It's less tiring and safer if balance is a concern.
Provide a cart with wheels - like a tea trolley - for moving things. It takes less energy and has the added advantage of providing support for maintaining balance.
Keep frequently used items like the kettle, teapot and tea at countertop level. A lazy susan is ideal for making items accessible.
Safety in the Bathroom
The greatest danger is falling. The bathroom floor, bathtub and shower are slick and slippery when wet. There isn't anything in the house more punishing in a fall than the unyielding sides of the bathtub.
Install a grab bar by the tub or in the shower. Test it to be sure you feel confident it will hold your care recipient's weight. Don't use a wall-mounted soap dish or a towel rack as a substitute.
If your care recipient is unsteady in the shower, get a shower bench. It's like a waterproof chair for the shower. If you don't have a hand-held showerhead, install one on the existing showerhead outlet. It makes a 'sitting-down shower' much easier.
Non-skid strips or rubber mats in the tub or shower are a good idea but you have to be careful. If they accumulate soap residue, they are just as slippery as the tub or shower.
Use soap on a rope. It's always within reach and stays out from under foot.
Getting on and off the toilet can be a real challenge for someone with Parkinson's when the toilet is quite low relative to the floor. Use a raised toilet seat with armrests to help maintain balance and prevent falls.
Consider getting your care recipient an electric toothbrush. It isn't a safety issue; it just does a better job cleaning teeth because it mimics the quick wrist movements that can be difficult for someone with Parkinson's.

Comfort in the Bedroom
Getting in and out of bed and turning in bed can be a real problem for your care recipient. These tips will make it easier.
Adjust the height of the bed so it is neither too high nor too low.
If you thought satin sheets were only for the rich and famous, you're in for a surprise. These slinky bed linens are great for people with Parkinson's because they make it much easier to turn and move in bed.
There are different approaches to help your care recipient get into bed. You might suggest sitting on the edge of the bed, lowering sideways onto an elbow and then bringing the legs up onto the bed. Try having your care recipient kneel on the bed and crawl further onto the bed and then lower his or her body sideways. Another choice is to have your care recipient sit on the edge of the bed and fall back onto a pillow. Then you can help raise his or her legs onto the bed.
Turning in bed can be difficult if your care recipient has trouble initiating movement or is rigid. Suggest that he or she bend the knees and place the feet flat on the bed. Then he or she can turn the head in the direction of the turn. By reaching across the body toward the edge of the bed, the trunk and hip will follow - like rolling a log. It helps if they can grab the edge of the bed or a grab bar on an adjacent wall. This is where satin sheets make sliding and turning much easier.
Getting out of bed is much like getting in. With your care recipient on his or her side, bend the knees toward the chest so the feet are near the edge of the bed. By supporting him or her with a forearm, the care recipient can push up using an elbow and hands and at the same time swing the feet over the edge of the bed onto the floor.
An occupational therapist will have further suggestions that apply to your specific situation.
Falls
As Parkinson's progresses, gait (the kind of step used in walking) and balance problems are more pronounced. Hard as you try to prevent it, a fall may happen. Keep these points in mind, just in case:
When a fall happens at home, encourage your care recipient to stay still and rest in a comfortable position for a few moments before getting up. Remain calm. If your care recipient becomes anxious, it will be more difficult to get up. If there appears to be injuries that would be aggravated by trying to get up, call for medical help.
Don't attempt to lift the person from the floor unless you have been trained to do it in a way that won't cause you to injure yourself.
If there are no apparent injuries, bring a chair to your care recipient and ask him or her to roll onto hands and knees. Have him or her bend one leg and put a foot firmly on the floor. With the opposite arm on the chair your care recipient can use arms and legs to push up to a standing position. Provide support in case of dizziness or lightheadedness.
Have a hug, a laugh and a cup of tea.

Taken from PDcaregivers.org

Thanks to all the caregivers. We appreciate you.