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.
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
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.
