NOTE: Dr. Jackson's philharmonic research was originally scheduled but will now be presented at a later date after all of her research is completed.
Nov. 17 - Dr. Lynn Stafford, podiatrist, will be discussing how podiatry issues (feet, posture, balance, etc.) affect Parkinson's patients.
Dec. - NO MEETING. Celebrate the Christmas season with family and friends.
Jan. 19 - Caring and Sharing Concurrent Sessions.
Feb. 16 - Amy Stir, OT and Driver Rehabilitation Specialist with the Fort Wayne Rehabilitation Hospital will present the program "The Older Driver", and will show us ways to determine when and if it’s time to relinquish our driving privileges.
September Meeting
What an informative treat to hear from neuropsychologists Dr. Tasha Williams, Phd, ABPdN, HSPP, and Dr. Ronald Williams, Phd, ABN, HSPP regarding Alzheimer’s disease.
Alzheimer’s disease, Lewy Body Dementia, and Parkinson’s disease Dementia are all classified under the larger ‘Dementia Umbrella’. Using the reference guide provided by our speakers, what follows are some of the components of the above three dementias as they are compared.
ALZHEIMER’S
Key Features
Persistent and worsening forgetfulness
Disorientation and confusion
Difficulty with abstract thinking
Difficulty with familiar tasks
Personality changes
Changes in judgment
Onset
Gradual with progressive worsening
Sudden appearance following illness or injury
Caregiving
Calm and stable home environment
Reassurance and support
Mental stimulation /social interaction
LEWY BODY DEMENTIA
Key Features
Shared characteristics w/ Alzheimer’s and Parkinson’s
Visual hallucinations
Masked facial expression
Bradykenisia
Delusions
Cognition deficits
Sleep problems
Onset
Gradual onset
Worsens more rapidly than Alzheimer’s
Caregiving
Clutter and distraction free environment
Reassuring and validating responses
Break tasks into small parts for success
Structure and routine
PARKINSON’S
Key Features
Slowed processing speed
Impaired mental flexibility
Visual-spatial deficits
Memory Loss
Motor symptoms predate cognitive decline
Hallucinations
Onset
Progressive-Dementia usually starts at least 2 years after diagnosis
Variability in symptoms present
Caregiving
Clutter and distraction free environment
Reassuring and validating responses
Break tasks into small parts for success
Structure and routine
Both presenters wanted to discuss caregiving in more detail but time was short. Both agreed they would like to return at some future date to present a detailed plan for caregiving as it relates to the dementias.
A NOTE FROM DAN SPANGLER
IMPORTANT ANNOUNCEMENT
WE NEED AT LEAST 20 MORE PEOPLE WITH PARKINSON’S TO PARTICIPATE IN THE IPFW-PHILHARMONIC MUSIC RESEARCH STUDY COMING UP SOON. THE DEADLINE TO REGISTER IS OCTOBER 1, 2011. PLEASE BE INVOLVED IN THIS RESEARCH! HELP IN THE DEVELOPMENT OF MORE KNOWLEDGE ABOUT PARKINSON’S. RESEARCH IS THE MAJOR AVENUE FOR FINDING A CURE FOR, OR, AT THE VERY LEAST, AFFECTING THE SYMPTOMS OF, PARKINSON’S. CURRENT CONCERT DATES ARE OCTOBER 9th, 16th, and 30th, AT SWEETWATER SOUND AUDITORIUM.
WON’T YOU HELP US? CALL OR EMAIL TODAY:
Dr. Nancy Jackson – 260-481-6716 or jacksonn(AT)ipfw.edu
Dr. Pam Kelly -260-615-6777 or kevkelly82000(AT)yahoo.com
THANK YOU
CAREGIVER’S CORNER By Ed Gatke
Nine Ways to Get Someone to Eat
A common nutritional problem that can affect care recipients in poor health is Cachexia-anorexia and it especially involves those in advanced stages of Alzheimer's cancer, and AIDS. It is a syndrome in which progressive and involuntary weight loss occurs. The people with this disorder are "wasting away" from the lack of vitamins and nutrients, and as a caregiver, this can be a difficult and frustrating event to witness.
This syndrome can be attributed to, among other things, medications and psychological problems like depression. It is also possible the person you are caring for has a loss of appetite simply from not feeling well. Caregiver.com has come up with a list of ways to help your care recipient eat. This list doesn't necessarily reflect the needs of care recipients on special needs diets such as diabetes or restricted salt intake diets. Remember to consult your physician about the specific dietary needs of your loved one.
1. Water, Water, Water. Make sure the person you are caring for has plenty of water to avoid dehydration, which can lead to appetite suppression.
2. Keep it small. Instead of three large meals a day, which can look overwhelming to someone in poor health, serve six small meals day.
3. Bulk up on the amount of calories per meal. For instance, you can add protein powder mix to shakes or drinks to increase calories.
4. Soft is better. Serve soft foods such as pudding, ice cream or fruit smoothies because they can be tasty and easy to digest.
5. Make it tasty. Don't serve bland or sour tasting food.
6. Put the power in their hands. When possible, give the person you are caring for the decision-making power to decide what they would like to eat; it helps them to feel in control.
7. Make it pretty. Present appetizing looking meals by accenting the plate with a garnish (i.e.strawberry or melon). Also, make the dining experience pleasant for the person you are caring for by playing soft music or talking to them about the day's events while they are eating to take their mind off not feeling well.
8. Write it down. Keep a food diary about the person you are caring for and include: what food they have problems or complications digesting and their daily food menus, and review it with their doctor or dietician for feedback. They may be experiencing digestive problems or irritable bowel syndrome due to their menu.
9. Work it out. Try to get them moving to work up an appetite. If overall exercise such as walking isn't possible, have them fold the laundry or peel vegetables.
Borrowed from Caregiver.com
Wednesday Morning Caregiver’s Corner
Please join us for a Special Caregiver’s Meeting on Wednesday, October 12th, 2011, at the Turnstone Auditorium, from 10:30 am – 11:30 am.
Bonnie Davis, of Visiting Nurse and Hospice, will address the needs and issues of caretakers and discuss more effective ways of meeting the needs of our PD spouses.
ATTENTION…ATTENTION…ATTENTION
Further study on music and its effect on symptoms of Parkinson’s disease is being planned.
The Fort Wayne Philharmonic and the IPFW Music Therapy Department are planning this study. The study is going to explore and compare the impact of live, recorded, and video-taped music on symptoms of Parkinson’s disease. THE PROGRAM NEEDS A MINIMUM OF FORTY-FIVE (45) PARTICIPANTS.
You are invited to participate. The concerts will all be on Sunday afternoons. The times will be different for each session because each group of participants will be experiencing the concert in a different format each time. One will be a live performance, one video-taped, and one audio-taped. All concerts will take place at the Sweetwater Sound Auditorium on US Route 30 west of the city, and will be about fifty (50) minutes in length. The first two dates are October 9, 2011, and October 16. The last date is unconfirmed at this time, and will either be October 30, or November 6.
If you are interested in volunteering to participate in this study, you must be at least 18 years of age, and be diagnosed with Parkinson’s disease. Please contact either Dr. Pam
Kelly (260-615-6777 or kevkelly82000(AT)yahoo.com) or Dr. Nancy Jackson (260-481-6716 or jacksonn(AT)ipfw.edu) for more information about becoming a participant.
CALL AND SIGN UP NOW! LET’S SHOW OUR SUPPORT FOR THIS PROJECT!
A Turnstone Center Opportunity
Substitute teachers are needed for Turnstone's Kimbrough Early Learning Center. You would assist staff in the classroom with lessons, food service, nap time routines, and any other activities that go on in the classroom. (no changing diapers) Children range in age from 2-12. If you are interested contact Adrianne Lyon at 483-2100 x235. She can answer any questions you may have and fill in additional details and requirements
Participants Needed for PD Study
Participants with Parkinson's disease are needed for a research study at the University of Indianapolis (Krannert School of Physical Therapy). The study is investigating long-term changes in hand strength, mobility, balance, and quality of life in persons with Parkinson's disease who exercise, and those who do not exercise. The study will help us to better understand the effects of exercise on the progression of Parkinson's disease. You must be able to travel to the University of Indianapolis
> for research sessions over a span of two years. Contact Dr. Stephanie Combs, PT,Phd, NCS, 317-788-3523. or email at scombs(AT)uindy.edu if you are interested.
WHAT: AARP 55 Alive Defensive Driving Class
WHEN: 10:00 am - 3:00 pm, Wednesday, October 12, 2011
WHERE: Community Center 233 W. Main St . Ft. Wayne
A One day driving course for seasoned drivers.
This is an "open" course so you do not need to be over 55 years of age to register.
Lunch break with your own sack lunch or at nearby fast food restaurants.
FEE: $14.00 or $12.00 for AARP members with AARP ID card. Make checks payable to AARP.
Registration deadline is October 5, 2011. Call the community Center 260-427-6460 to register or for more information.
Editor’s Note:
The articles you normally would find each month would complement the FWPSG topic for that month. However, this month you will find a list of assistive devices grouped so that you can find the help for the particular need you may be facing this very day or perhaps next week. This resource may alert you to products you were not aware were available for help. It may also be beneficial as a guide to select the right jargon to help locate and ask for these products my name, so that you can find just the right assistance for the Parkinson’s person under your care. Members who receive this by email should be able to click and go right to the webpage. Happy hunting. And for more ideas you will not want to miss the coming meeting for more great ideas. We will see you there.
Assistive Devices to Help People with Parkinson’s disease.
Caregiver Resources
· Family Caregiver Alliance
· National Family Caregiver Association
· Family Caregiving 101
· Caregiving.com
· Alzheimer's Association
· Choice Advisory Services
Eldercare advisors
· Assist Guide Information Services
Eldercare, Long-term Care, and Caregiving
· Lotsa Helping Hands
An online scheduling tools for caregivers
Devices to Help with Activities of Daily Living
Adaptive Clothing
· www.blvd.com
Assistive, Medical, and Exercise Devices and More
· www.makoa.org
· www.dynamic-living.com
· www.seniorsuperstores.com
· www.liftchairs4less.com
· www.make-life-easier.com
· www.maxiaids.com
· www.ustep.com
Chairs
· www.phc-online.com
· www.liftchairs4less.com
· www.spinlife.com
Computer assisted aids and other devices
Adaptive Technology Resources
· Assistive Technology for Computers and Printed Material
This site provides links to articles and assistive technology resources for people with disabilities.
· AssistiveTechnologies.com
Assistive Technologies strives to remove the "dis" from disability and encourage each person's ability through the implementation of modern Technologies.
· Microsoft Accessibility Resources
Microsoft Accessibility makes the computer easier to see, hear, and use. Discover what's possible with Accessibility Today and read inspiring Profiles of Accessibility in Action.
Assistive Technology Product Reviews
· Who Should Use an On-Screen Computer Keyboard?
· New Mobility
A great site to read reviews on the latest assistive technology devices from actual users.
Assistive Technology Products
· MagicCursor 2000-Alternative Clicking Solution
MagicCursor 2000 is for people who can't, or don't want to click the mouse button. MagicCursor 2000 performs all the mouse button functions automatically through software. All you need to be able to do is point: MagicCursor automatically takes care of the rest. It is an ideal companion for the Tracker head operated mouse products. Instead of clicking the mouse button, simply dwell over the item you want to select. After a preset amount of time, MagicCursor will automatically perform the click for you. Compatible with Windows Vista,XP, and 2000. For people using a headpointer like Tracker who have difficulty using a standard mouse to supply mouse clicking functions, including individuals with Quadriplegia, Cerebral Palsy, Multiple Sclerosis, Muscular Dystrophy, ALS, Carpal Tunnel Syndrome and any other disability where the user has little or no control of their hands to use a standard mouse.
· Dragon NaturallySpeaking
Dragon NaturallySpeaking, the world’s best-selling speech recognition software, gives you everything you need to be more efficient with your PC.
· SteadyMouse
SteadyMouse is free software designed to assist people with hand tremors commonly associated with Parkinson's and other neurological disorders.
· Jobs Access with Speech (JAWS) for Windows
For Windows 95, 98, ME, 2000, XP, and Vista, this popular screen-reader can pronounce American English, Brazilian Portuguese, British English, Castilian Spanish, Latin American Spanish, Finnish, French, German, and Italian.
· WindowEyes Professional
A widely-used screen-reader for Windows 95, 98, ME, 2000, XP, and Vista that supports speech synthesizers and over Braille displays.
· Apple's Tiger & Leopard Operating Systems for Mac
Includes a variety of accessibility features that allows those with vision, hearing and motor skills disabilities to more easily use their Macintosh computer.
· iBraille
A user friendly Braille editor for Macintosh users.
· Google Accessible Web Search for the Visually Impaired
Google search with audio component.
· WebAnyWhere
A web-based screen reader that enables blind people to access the web from any computer with a sound card.
· BrailleConnect 12
This 12-cell refreshable braille display can be used to write and read SMS text messages and operate your mobile phone or PDA.
· Vocal-Eyes
Designed to enhance career opportunities for the visually-impaired by providing fast and flexible access to the wealth of software used by business and professionals.
· Books-To-Burn
A text- to-speech file for making books on CD on Macintosh computers by translating text files into audio files that can then be converted to mp3's.
· EmacSpeak Complete Audio Desktop
A free text-based UNIX system which works with Emacs that can speak the information on visual screen displays.
· e-Speaking Voice and Speech Recognition
Enables you to control your computer, dictate e-mails and letters, and have your computer read documents back to you.
· Lynx 2.8.5
A free text-mode browser with voice-synthesizers and Braille-based technology, Lynx works on diverse platforms including MacIntosh MacLynx, Windows, DOS, UNIX, and VMS.
· Proloquo 2.0
With speech to iPod-ready iTunes tracks and quick voice access, Proloquo offers a multi-lingual speech and communication system for Mac OS X users who cannot speak.
· IBM Easy Web Browsing
Helps people with limited vision access Web content more easily.
· Speakup for Linux Operating System
Provides access to all console programs for Lynx, Pine, and GNU/Linux operating systems.
· Hal Screen Reader
For Windows 95, 98, Me, NT4, 2000, XP, and Vista, Hal includes the Dolphin Orpheus Speech System and Microsoft's MSAPI Speech Synthesizer that can pronounce words in English, Dutch, French, German, Italian, Spanish, and Swedish, as well as Grade 1 and 2 Braille.
· Brailliant 24
A 24-cell refreshable Braille display that serves as a Braille terminal for PC screen readers.
· BrailleSurf 4
Offers English, French, and Spanish versions of its Internet browser for Windows 95, 98, NT, and 2000 that displays on a Braille bar or can be spoken by a speech synthesizer.
· Supernova
Offers magnification, speech and Braille support to give people with visual impairments the ability to access Windows.
· EIA Web Browser
A specialized Web browser, suitable for touch-screen systems, with fully integrated Web awareness, assessment and training modules.
· LightWriter
A text-to-speech communication aid for people with speech impairments offering a dual display option, choice of keyboard layouts and languages.
· LunarPlus Screen Magnifier
Offers people with visual impairments the advantage of speech output.
· The Magnifier
Offers 2x – 10x screen magnifier amplification for Windows 3.x, 95, 98, NT, Windows 2000, and Vista that can be positioned anywhere on your computer screen.
· ZoomText 9.1
Level 1 provides 2x – 16x magnification, Level 2 provides synchronized magnification and screen reading. Works with Windows Vista, XP, ME, 2000, NT4, 98, 95, and DOS.
· Kurzweil 1000
A system for scanning books and other printed materials into a computer and then speaks it aloud through a voice synthesizer.
· Cicero Text Reader
This device turns a computer or scanner into a reading machine for people with a visual impairments. Documents placed on the scanner can be translated into speech or Braille.
· OpenBook 6.0
Allows books and text embedded in graphics to be spoken back through a voice synthesizer, including the ability to create MP3 and WAV file as well .brf and .brl Grade 2 Braille formats.
· Telesensory Ovation
Scans and translates text from books and other printed matter into speech.
· i-Scan
This document reader includes a DEC talk Voice, an OCR reader, a flat bed scanner, a computer, and a screen reader.
· Poet Compact: Scan & Read Standalone Reader
This compact machine includes an internal hard disk, flat bed scanner, a text recognition program, and a speech synthesizer.
· SARA Scanning & Reading Appliance
Scan reading materials and have them read back to you as continuous read, line-by-line, word-by-word, or letter-by-letter. Includes 29 voices in 19 language dialects and 12 major languages.
· Click-N-Type Virtual Keyboard 3.03
A free Windows and DOS application that displays a virtual on-screen keyboard for people who cannot type using a physical keyboard.
· QPointer Keyboard
Use your keyboard as a pointing device to perform computer operations without taking your hands off the keyboard.
· Flexiboard
Built-in optical overlay-detection, allows the keyboard to detect which overlay is placed on top of the keyboard. Overlays can be changed without commands to the computer thus allowing users to handle a large range of overlays independently.
· KeyStrokes 4 for the Mac
A virtual on-screen keyboard that allows you to type using a mouse, trackball, head pointer or other mouse emulator to type characters into Macintosh applications.
· Dwell Clicker
A free utility for people who can move a mouse but have difficulty clicking the mouse buttons.
· Dasher
Data entry interface driven by a mouse, stylus, or eye-tracker.
· BigKeys
Offer keys that are 4 times larger than a typical keyboard and works with both Windows and Macintosh computer.
· Magic Wand Keyboard
Windows or Macintosh keyboard with built-in mouse that allows people with disabilities easy access to the Internet, e-mail, and computer programs with a hand-held wand or mouth-stick.
· VirtualKeyboard for Macintosh
An on-screen keyboard that offers point-and-click typing using pointing devices such as a head pointer, mouse, trackball.
· SmartNav
A hands-free mouse for people with carpal tunnel, RSI and other disabilities allowing you to control your computer by simple head movements.
· EyeGaze Communication System
Enables people to use their eyes to operate a computer or telephone.
· VisionKey
Combines an eye tracker and a viewer that measure the position of the eye. Users look at a specific word, letter or character in front of their eyes and "type" by holding their gaze until a selection is confirmed by light and sound.
· Assistive Mouse Adapter
Filtering unintentional movements caused by hand tremor, this device allows for much smoother movement of the cursor for improved accuracy of mouse operation.
· Boost Tracer
Improves mouse control for people with Quadriplegia, CP, MD, MS, ALS, CTS and other disability where lack of hand control does not allow you to use a standard mouse.
· Quadjoy Mouse
Mouse for quadriplegics with all of the functions of a standard 5-button mouse or wheel mouse.
· Headmaster Plus
This head pointing device provides full mouse control of computers for persons who cannot use their hands. Compatible with Macintosh, IBM 2 or 3 button serial mouse, or IBM PS/2 mouse.
· Smart-Nav AT Package
A hands-free cursor control system for people with ALS, spinal cord injuries and other disabilities.
· HeadMouse
Wireless head-pointing device for Macintosh and Windows includes a "sip-and-puff" switch.
· NaturalPoint Head-Tracking Mouse
A hands-free mouse alternative that connects to your computer through a USB port allowing precise cursor control through simple head movements.
· TrackerPro
Computer device takes the place of a mouse for people with little or no hand movement.
· Skipper
This free package for Linux describes simple sensors allowing people with severely limited or involuntary movements to operate a computer.
Medication Reminder Alarms
· http://www.epill.com/
Personal Security and Alert Systems
· http://www.x10.com/security/personal_alert.html
Products for Eating, Dressing, Toileting, Etc.
· www.disabilityproducts.com
Recreation
· http://www.landeez.com/
Circulation
· www.healthylegs.com
Driving
· http://www.dol.wa.gov/driverslicense/seniors.html
Exercise
· "Motivating Moves for People with Parkinson's"
Video and DVD featuring seated exercises, now available through the Parkinson Foundation of the Heartland. Cost: $19.95.
Their website has viewable samples. (You need either QuickTime or Windows Media Player plug-ins to view the samples.)
· "Parkinson's Disease & The Art of Moving"
Oakland-based John Argue's exercise book and video/DVD for PD patients. Cost: $19.95 book, $47 DVD or video.
A few of the exercises are intended to be done seated.
· "Move It! An Exercise and Movement Guide for Parkinson's Disease"
Book and DVD for PD patients developed by Kevin Lockette, a Hawaii-based physical therapist. Cost: $40.
Some of the exercises are meant to be done while seated.
Incontinence
· www.dmponline.com
· www.geriatricstore.com
· www.woodburyproducts.com
PD Information and Support
· American Parkinson Disease Association
· National Parkinson Foundation, Inc.
· Michael J. Fox Foundation
· Northwest Parkinsons Foundation
Prescription Assistance
· Partnership for Prescription Assistance (PPA)
(800) 477-2669, info(AT)pparx.org
This organization researches the various drug assistance programs currently available and helps find
programs to help lower medication costs.
· NeedyMeds.org
www.needymeds.org
This web-based service shares information on cost saving ideas and includes drug coupon programs,
disease-specific assistance programs, information about discount drug cards and more.
· TogetherRx
(800) 444-4106, www.togetherrxAccess.com
This pharmaceutical sponsored program offers a 40-60 percent discount on certain brand name and
generic medications for those who do not have prescription coverage.
· Parkinson's Disease Foundation (http://www.pdf.org/en/saving_meds)
This organization provides some guidelines for reducing medication costs and lists pharmaceutical
companies that currently have drug assistance programs.
· Rx Help
(866) 906-9497
This organization provides drug discount cards.
· Rx Assist
(401) 729-3284, www.rxassist.org
This organization has information about patient assistance program and drug discount cards.
· Extra Help with Prescription Drugs For those on Medicare
www.ssa.gov/prescriptionhelp Phone: 1-800-772-1213
· Patient Advocate Foundation - Co-Pay Relief
www.copays.org
Seniors
(Resources for Seniors with or without PD)
· www.seniorservices.org
· www.scn.org/seniors/
Speech and Hearing
Lee Silverman Voice Treatment
· www.lsvtglobal.com
Music Therapists
· www.cbmt.org
Voice Amplification/Hearing Aids
· http://www.tedpa.org/member/washington_telecommunication_equipment_distr...
· www.consumer.att.com/relay
· www.maxiaids.com
Vision
· www.independentliving.com
· www.maxiaids.com
We are now meeting for exercise on Mondays and Wednesdays
10:30 a.m. in the usual place.
We hope newcomers will choose the Monday class, as the Wednesday class is running at, or near, capacity of twenty-five participants.
Doug and Marcia Lary
Familiar Faces say “Hello” to their PSG friends in Fort Wayne
Members, Bill and Mary Stratton paid a visit to the Lary’s in their new Oregon residence. They found the Doug and Marcia well and busy. Doug provided the leadership for our group before passing it on to our current leader, Dan Spangler. The Lary's moved to Portland, Oregon to be near their daughters and their grandchildren. We were invited to a gourmet dinner at their community dining center, where Doug shared the details of his busy life there in the community.. He continues to create woodcarvings of his loved one, which you can see in the picture behind Doug. Not only is he carving, but working with genealogy and facilitating that group. In addition, he leads the Parkinson’s group and the exercise class. Doug also finds time once a month to pastor at the complex. In the workout room he has recently achieved a milestone of lifting 1 million pounds and is well on his way to the 2 million pound goal. Marcia is also enjoying their new lifestyle because everything that they need is just around the corner and readily accessible. A big thanks to Marcia and Doug for showing us the new home.
