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Joy and Excitement in Grand Junction!
Over 4 days in May, the Post-Polio Clinic Volunteer Team: Marny Eulberg, MD; Maggie Hanlon-Hopkins, retired PT, and Margaret Hinman conducted physical evaluations for regional Polio survivors. The professional exanimations included a medical history, a muscle test and a written report for each patient and their doctors. Spouses, adult children and other
supporters joined to share education, encouragement and good eating on the final day. A spirited question and answer session brought both tears and laughter from finding others who deal with similar situations. Margaret led a model meeting. To further inspire and bolster others, Chuck Langan and Loran Dake volunteered to follow up and re-start the previous Grand Junction Support Group. What a great success it was! Many thank-you’s to all the volunteers and attendees! The local newspaper and TV noticed the event.
SUMMER 2015
2 Every Last Word is Contagious
3 FALL CONFERENCE
4 Congratulations to Parivash!
4 Networking
5
Buying a Power Lift Chair-Recliner
6 Experts Present Videos
7 Aging in Place
9 Tips & Trades
10
Support Groups
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EVERY LAST WORD IS CONTAGIOUS
Fritzy Dean © 2015
Every last word is contagious. What does it mean
To have the last word? That you can talk louder
Or longer? That we will never speak of it again?
No, I don’t think so.
Every last word is contagious. Don't believe
The old story about sticks and stones. Words
Can hurt. It takes “you're wonderful”
One thousand times to erase one ‘you're stupid.’
Every little word is contagious. One word made me
Lift weights, dance Zumba and enter a race, just
Because he called me an athlete.
At five years old I heard my mother say, “She would be
Cute if only her hair would curl.” After 75 years I still
Remember the sting.
My own mother thought
I Was ugly. Every single little word is contagious.
Harsh words infect the soul.
Loving words infuse the heart.
Words can be a kiss, a caress:
I appreciate you. You are amazing.
Words can be a dagger to the heart.
Leave and don't come back. You are a
Loser and always will be.
Be aware of the words you choose.
You will never know their impact.
Every last word is contagious.
For comments and encouragement - [email protected]
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Fall Conference!!!
SEPTEMBER 18-19, 2015
Friday afternoon 9/18, we’ll gather at the Doubletree by Hilton-
Stapleton North in Denver for a genial Meet and Greet. The focus will be “Aging in Today’s World: Safety-Health-Wellness”
Saturday morning 9/19, Dr. Robert Tello, a Loveland Internist and Rotarian will speak on “Polio -Yesterday, Today and Tomorrow.” He’ll bring a documentary clip about President Roosevelt’s battle with polio and our epidemics and efforts to eradicate the disease in the US. He’ll discuss the disease’s prevalence around the world where it is spread by refugees and nomads. Presently, there have been viruses that mimic paralytic Polio in children. In the future, exciting research is ongoing using the polio and other viruses to attack various cancers where effective treatment hasn’t yet been found. A panel of physical, respiratory, speech, mental health therapists and a pulmonologist is planned. These folks will converse with attendees individually and respond to questions and answers. Cary Johnson, a dazzling expert on Physical and Personal Safety, will give us confidence so we become savvy handling our individual hurdles. As the Conference ends, Will Mannsz (a professional illusionist) will describe how being bullied over his childhood disabilities led him to overcome problems with his contemporaries. Teaching himself magic tricks and “illusions” became his way of coping. Many of us with PPS can relate to Will’s experience, that appearance is actually an illusion and not the real person inside. It will be fun and up-beat, leaving us laughing and wondering “HOW does he DO that.” Naturally, we will all delight in a delicious lunch! Registration is $55. Our group hotel rate is $89 per night if you reserve by August 19. For more information, contact Sandy Abbott at 303-535-4913 or sandya65@ outlook.com
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CONTRATULATIONS TO PARIVASH MEHRDADI
Of MARYLAND
April 30th, She Became an American Citizen! * * * * *
Back in February we received a letter from Cerese D Schultz of Tyrone, New Mexico. She describes having polio in 1944-46 and a spinal tap at Colorado General Hospital. The polio ward was full and she was taken to “a gym across the street where the boys were on one side and the girls on another.” She remembers a nurse’s station up front and “big wringer washers with hot water and hot blankets.” She now has an AFO on her right foot. Cerese would like to connect with any other patients from that time. You can contact her at POBox 637 Tyrone, NM 88065-0637 or by E-mail at [email protected]. In line with the above, Polio Health International has set up a Search Box where former patients can reconnect with others. Visit www.polioplace.org and YOU might find an old friend there, too.
You’ve Got Mail - OR
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AVOIDING MISTAKES WHEN BUYING A POWER LIFT CHAIR-RECLINER
Credit: Jeff Roth, MPT - Reprinted from The Sunshine Special, FL, Aug/Sept 2013
Five Tips from a Licensed Physical Therapist for best of luck in your lift chair purchase:
If getting up and down from a sofa or chair is not as simple as it used to be for you or your loved one, buying a power lift chair may be the right move as they are relatively inexpensive for the benefits they provide. There are so many options, both in stores and online, when it comes to buying mobility equipment that it can become overwhelming. As a licensed physical therapist and home health care specialist, I assess people with physical disabilities on a daily basis and can provide insight to avoid mistakes in your purchase.
1. Number of Positions This is the most important feature to consider. When looking at chairs,
you'll see some at '2 Position', some '3 Position' and some 'Infinite Positions'. Infinite position models have two motors to let the footrest move independent of the back portion. Those who want to sit upright, but also have the footrest up, will need this type of chair. Both '2 Position' and '3 Position' chairs require the backrest to recline to have the footrest slide out because they only have a single motor. '3 Position' chairs differ from '2 Position' types in that they allow full recline; 2 positions only recline to 45 degrees.
2. Fit Just Like Any Recliner You want the chair to fit your body size. This is very important because the larger the chair, the deeper the seat cushion. Choose a chair that's too big and your legs may not touch the floor when sitting straight up. Choose a model that's too small and your lower back area might not respond well.
3. Type of Covering Do you sweat a lot? Leather may not be the best choice. Is incontinence a problem? Perhaps material made of cloth does not make sense in this case. In most cases, leather will cost more, but do not discount its benefits.
4. Living Area Do you have a fairly tight area in your living room to place the chair? Does it need to be against a wall? Models are available that can start against a wall and slide open forward without banging into the wall behind it. Standard models both slide out and backwards, which may be a problem in tight areas.
5. Advanced Features Higher end models provide features such as heated seats, lift speed variations, vibrating seats and cup holders. While these features may seem unnecessary, people with aches and pains could find them very soothing and worth the higher price tag.
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Post-Polio Experts Present (Video Series)
These timely informational videos are presented by dedicated experts who have significant experience in managing post-polio problems and in advocating for the survivors of polio. The presenters provide information and advice to the health professionals who treat polio survivors and also to survivors and their families
YOU MAY ACCESS THESE VIDEOS at www.polioplace.org.
Ways to Avoid Respiratory Complications of Postpoliomyelitis John R. Bach, MD
Developing a Personal Philosophy about Disability Lawrence C. Becker, PhD
Polio and Anesthesia Selma Calmes, MD
Sleep Hygiene William M. DeMayo, MD
Poliomielite (Portuguese) Sheila Jean McNeill Ingham, MD, PhD
Spirituality in Disability Cyndi Jones, MDiv
Growing Older with Grace Audrey J. King, MA (Psych)
Relationships Stephanie T. Machell, PsyD
Components of a Post-Polio Evaluation Frederick M. Maynard, MD
Disability Affirmative Therapy Rhoda Olkin, PhD
Self-Advocacy and Community Advocacy William G. Stothers
Are Polioviruses playing a pathogenic role in the late consequences of polio? (English) Antonio Toniolo, MD, FAMH
Are Polioviruses playing a pathogenic role in the late consequences of polio? (Italian) Antonio Toniolo, MD, FAMH
Components of Comprehensive Post-Polio Management Carol Vandenakker-Albanese, MD
The Importance of Posture Holly H. Wise, PT, PhD
The series “Post-Polio Experts Present” was underwritten by a grant from the Roosevelt Warm Springs Foundation
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Aging in Place
Our thanks to the Rancho Los Amigos Post-Polio Support Group for this! ©Copyright 2014 by Rancho Los Amigos Post-Polio Support Group Please submit your request to reprint to: [email protected]
Or mail to: RanchoPPSG, 12720 La Reina Avenue, Downey CA 90242 We are using the term "aging in place" in reference to living in the home where you have lived for many years, As circumstances change, you may begin using products, services, and conveniences that will enable you to remain at home. Some of these changes may be related to aging such as: Physical changes:
Decreased mobility and dexterity Decreased strength and stamina Reduced sensory acuity: vision and hearing of course, but also touch and smell
Social changes:
Isolation from family and friends, because you don't drive or go out as often Death of peers Changing neighborhood demographics
Remodeling Your Home to Age in Place There are a number of items to consider when remodeling your home. You may wish to consult a professional early in your evaluation process, No one is going to make all of these modifications, but it is often helpful to list the different possibilities. General Modifications:
Adapt lower floor of home for possible one level living Increased task lighting Easy garage or parking access At least one entry without steps Doorways 36" wide with off-set hinges on doors Levered door handles instead of knobs Electrical outlets at 18 inches above the floor instead of 12 inches Easy to open or lock patio doors and screens Light switches at 42 inches high instead of 48 inches Adjustable controls on light switches Luminous switches in bedrooms, baths, and hallways Automatic night lights in many rooms Flashing light or vibrator-assisted smoke and burglar alarms Programmable thermostats for heating and cooling Contrasting color borders around floor and counter-top edges
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Non skid flooring Door 'peep hole" at a low height Incorporation of emergency response system, installed or wearable
Bathroom:
Lever faucets and faucet mixers with anti-scald valves Temperature controlled shower and tub fixtures Stall shower with a low threshold and shower seat Grab bars at back and sides of shower, tub, and toilet Bathrooms with turn around and transfer space for walker or wheelchair Higher bathroom counters if you are standing, but lower ones if you are sitting Cordless or cell phone that can be carried from room to room Installation of medical response device
Kitchen:
Kitchen cabinets with pull-out shelves and lazy susans Easy to grasp cabinet knobs or pulls Task lighting under counters Cook-top with front controls Adjustable upper shelves and pull out lower shelves in cupboards Variety in kitchen counter height – some as low as table height (30 inches) Gas sensor near gas cooking, water heater, and gas furnace Color or pattern borders at counter edges
Living Room:
Seating at least 18 inches off the floor Chairs with sturdy arms
Possible Assistance Needs To “age in place" one should be aware of community help and the services available to deal with increasing frailty or age related problems. They may also be needed in the event of illness. Services can provide:
Outdoor home maintenance and gardening Indoor home maintenance Heavy or light cleaning and housework
Driving:
Trips to the grocery store Other shopping trips Home delivery of groceries Transportation to doctor appointments
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Home care:
Meal preparation Bathing and dressing Personal care assistance Home nursing Emergency call/response systems to wear on your person
Pointers for Hiring Personal Care Help Non-medical in-home support services can allow older adults to stay in their home and perhaps maintain a more independent lifestyle than a group home or assisted living facility might offer. A non-medical in-home support services agency can provide experienced caregivers who can assist seniors in a number of ways. Reputable agencies are bonded and insured and their employees are covered by workers compensation and are regularly supervised. Caregivers may work for a client from a few hours per day or week, up to 24 hours, seven days a week. They prepare meals, do housekeeping, medication reminders, run errands, manage incontinence, give baths, and help clients transfer. Caregivers might also provide valuable companionship and encourage clients to exercise and participate in activities. The cost of non-medical in-home support services through an agency can range from $13 to $20 per hour. Long term care insurance policies can be helpful in meeting some of this cost but, unless you purchased this years ago, the cost can be very high. People who can't afford this cost can usually hire people privately for less money. However, they are taking a risk and will have to manage these caregivers with no professional assistance. Financial realities often dictate that this is the only viable choice. Whether you hire an agency to send you a helper or hire a helper yourself here are some tips:
Interview the candidate and/or the agency Ask the agency if there is a charge for the initial interview Get 3 work references for the candidate Get client references for the agency Ask if the care provider or agency is bonded Get a copy of a caregiver's driver license Ask if the care provider is unable to work one day, will the care provider (or agency) provide a substitute care provider?
Other questions you might want to ask a privately hired caregiver:
How many years have you been in home care? What were your duties for your last 2 patients? What is your favorite duty while taking care of a patient? What is your least favorite duty? On a scale of 1-10, 10 being best, how do you rate your:
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Cooking skills? Housekeeping skills? Personal care? Ability to follow directions? Flexibility?
Some of these questions might not be relevant to your needs but are a good, informal, way to learn more about the person and "break the ice." Remember, although you are the "boss," it is important to avoid being bossy or overly demanding.
Tips and Trades We’ve received an offer of a FREE 4-wheel, “Pride” scooter in Longmont. It has been stored, covered for about 5 years. It has a front light and solid tires but when last used, it ran perfectly, but needs new batteries. The owner has the original invoice, the manual with all the information and the key. The owner prefers to give it away than sell it. If you (reader) or anyone, knows of a good medical equipment repair-parts person or company, please let her know. For more information you may contact Judy at 303-651-3403. Judy’s E-mail is [email protected] Easter Seals also received a donated power chair. This one is about 10-years old but looks like new. It, too, needs batteries but otherwise has all its cords and a charger. It is a Bruno PWC Mini 2300 model with a 7-way seat. The manufacturer now only builds lifts, but this chair shows no evidence of having been “rode hard and put away wet!” This model was highly recommended when it was new and is attractive with light grey upholstery.
With many folks needing to upgrade to better assistance aids, it might make sense for us to provide an exchange where we can help owners swap no longer used equipment to people needing it. If anyone has found good service companies or retired servicers seeking part-time work, maybe you would let us know. If any volunteer would like to take on this project, it would be a wonderful service. As you know, Post-Polio has a Durable Medical Equipment grant program that could help supplement equipment exchanges.
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Colorado Post-Polio Support Groups Schedules Support groups usually have a plan, an activity or program for each meeting. In bad weather, call the contact person to make sure the meeting will be held. Colorado Post-Polio Council Annual Meeting is usually the 4th Monday in October, 11:00 am to Noon. Contact: Sue Brandon at [email protected] - 763-377-2287 or Nancy Hanson - Easter Seals Colorado, 303-233-1666, Ext. 237 Aurora - Meets 4th Thursday of each month, 11:00am to Noon Contact: Sandy Abbott - 720-535-4913, [email protected] Colorado Springs - Meets 2nd Saturday of each month, 10:00am to Noon Contact: Linda Groth - 719-633-1497 – (Call for location) Grand Junction – This group is presently regrouping! For new information Contact: Loran Dake 970-241-7825 - [email protected] andChuck Langan - 970-270-0654 Lakewood - Meets 2nd Tuesday in Jan., March, May, July, Sept. and Nov. from 11:00am to 1:00pm Contact: Gloria Aemmer – 303-274-1894, or [email protected] Northern Colorado (Fort Collins) - Meets 4th Saturday of each month, 10:00am to Noon Contact: Peter Way - [email protected] or Julia Hanan - 970-484-3822 Pueblo - Meets informally at Walking Stick Restaurant - (Call for dates) Contact: Maureen Sullivan - 719- 561-3182 - [email protected] Thornton - Meets 1st Saturday of the month (Call for dates) 10:00am to Noon Contact: Paul Puma - 303-453-9552
YOUR EXECUTIVE COMMITTEE MEMBERS
Sandy Abbott 720-535-4913 [email protected]. Sue Brandon, Chairperson 763-377-2287 [email protected]
Marny Eulberg, MD, Medical Advisor 720-321-8180 [email protected]
Jan Hamilton 720-341-2879 [email protected] Nancy Hanson, Easter Seals Liaison 303-233-1666 x237 [email protected]
Pat Jenni 303-880-3581 [email protected]
Janet Thompson 303-937-5052 [email protected]
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Colorado Post-Polio Connections FREE MATTER FOR THE c/o Easter Seals Colorado BLIND OR HANDICAPPED 5755 West Alameda Avenue Lakewood, CO 80226
This Is YOUR Newsletter-----
"Connections" is the official news publication of the Colorado Post-Polio Program. The opinions are those of the individual contributors, and do not necessarily constitute an endorsement or approval by either the Colorado Post-Polio Council or Easter Seals Colorado. (Always check with your personal physician for all medical questions and concerns.)
We invite your comments about this newsletter, but also your personal stories, other story ideas, and contributions. Tell us what topics you want to read about in future issues. If you have article ideas or suggestions, are willing to write a short article, tell your personal story or you'd like to review a book, please send an e-mail to Janet Thompson at [email protected], or write to:
Colorado Post-Polio Connections c/o Easter Seals Colorado 5755 West Alameda Ave. Lakewood, CO 80226
If you prefer to receive this newsletter online or change your mailing label information, please notify Nancy Hanson at Easter Seals Colorado, at 303-233-1666, ext. 237 or email her at:
