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2011 Holiday Party

Thanks to everyone who attended today's Christmas party at Rick and Lenora's.  The Kneeshaws’ co-hosts, Kathy, Tyler, Emma and Andrew, were all involved in making everyone feel welcome and all were gracious hosts!

 

Also, special thanks to Nice/Naughty, Steven Goldman, and his elf helpers, Emma and Andrew.  You each made our gift exchange run like clockwork.  Everyone had their favorite gift of the day, but it looked to me like the biggest winners were the two wine gift sets (smile).  Each one quickly reached the three touch threshold in record time!  Also big thanks to Marilyn and George Loba for bringing "helper gifts" for Emma and Andrew.  It seemed like that was the best part of their afternoon. 

 

At everyone's request, I'll be posting the main dish casserole recipes at PT.org as soon as I collect them all.  Funny how wonderful all the food tastes when everyone brings something to share. 

 

As noted in earlier emails and discussed again at today’s gathering, we will be selecting a new meeting location for 2012.  All Kaiser community meeting rooms have been closed for the upcoming year.  We will hope they will resume their schedule in 2013.  We have requested to be kept on Kaiser's Community notification list.

 

In the meantime, everyone agreed to scout for a new location.  Several good suggestions were tabled at today's party.  If you have an idea for a central location where we might meet in 2012, please let us know ASAP.  We will be sure to notify everyone if a January 14th meeting is in the cards.  Regardless though, please place the North County group's next meeting date, February 14th, on your calendar, and plan to attend if at all possible.  Dr. Bunyak, Encinitas Physical Medicine Physician, will be the guest speaker.  We'll be sending out a reminder closer to 2/14/12.

 

It was requested that I share the hyperlink for Boca Raton's "Second Time Around" newsletter.  Please link to:http://postpolio.wordpress.com/newsletter/.  Their December edition is definitely worth a read.  Hoping you will take the time to give it a look-see!

 

Thanks to everyone for attending and making today's event memorable!  Any time we are together we create priceless memories, which will be held in our hearts for years to come.  We are all very proud to be members of the San Diego Polio Survivors!!!

 

Merry Christmas and Happy New Year greetings extended to all!

Gladys and Rick

March 8th, 2008 Meeting Report

The March meeting of the San Diego Polio Survivors was attended by 19 members. We welcomed those attending for the first time, and welcomed back a couple of attendees who rediscovered us post-retirement. We extended hardy Polio Survivor greetings to Ruth, Harriet, Roger and Kathleen. And we offered best wishes and a heartfelt get well to Lenora Kneeshaw. All our thoughts and prayers are with Rick and Lenora during this trying time.

General introductions around the room included responding to the following question: With spring quickly approaching, what would you throw out or get rid of as you start your spring cleaning? The answers were varied and sprinkled with humor as each person shared their personal starting point. Those who have recently downsized to smaller living quarters in an effort to simplify their lives entertained us with the fact that once enough time elapses, the clutter just begins anew. No doubt we'll all begin this year's spring cleaning projects with a smile remembering that everyone experiences those same "clutter demons."

We took a moment to re-introduced Marilyn and George Loba. Marilyn is the new leader of the Escondido PPS group. She extended an invitation for everyone to attend their next meeting, which will be held the second Tuesday in April, 4/8/08, from 1:00 to 3:00 at the Joslyn Senior Center, Dorothy Boeger building, 728 N Broadway, Escondido. The Escondido meetings are held the second Tuesdays of even months, and the San Diego Polio Survivor group meets the second Saturday of odd months. By alternating months, San Diego County offers meeting opportunities every month of the year.

Our guest speaker for today's meeting was Judi Ravetti, owner of Adaptive Clothing in La Mesa. Her line of clothes is specifically designed for people who struggle with limited mobility. She brought along an entire rack of specialty items. So that we could easily understand the advantages for use on people with different and varied disabilities, she described their use in detail.

Judi's line included many items with snaps up the back - on the sides - or at the crotch, allowing easy access and fitting for people who stay seated a majority of the day. Her collection is based on comfort and ease of use. There were many pieces for wheelchair bound individuals, including dusters, T-shirts, pants and slacks, polo shirts, one piece jumpsuits, terry covers, ponchos, undergarments, and various types of coverings for feet and limbs.

Judi mentioned that it would be impossible to carry everything in-store, but she indicated that she is more than willing to search for and locate special order pieces for which you might be searching. For information or to arrange a presentation, you can contact Judi at:
Judi Ravetti
Plaza La Mesa
7960 University Ave. #240
La Mesa, CA 91941
Telephone # 1-619-460-1702

After a short break, we reconvened and had time for open discussion. It was a good opportunity to talk about PPS exercise limitations and different fitness programs around the San Diego area. As we all agreed, there are limitless opportunities to stay somewhat fit within the bounds of our individual activity and energy restrictions.

Roger displayed a pedometer he uses daily to keep track of the number of steps he actually takes in a day. Although most of us have a desire to work toward better fitness, we recognize an organized program might not be in our best interest with our muscle limitations. Sometimes we actually cover more territory getting from Point A to Point B than we give ourselves credit for accomplishing. He feels tracking his progress with the pedometer makes him aware of how much area he covers. It might also be a good way to avoid overdoing.

We talked about the next Post-Polio Health International, PPS Conference, which will be held in Warm Springs, Georgia, in 2009. Jointly we agreed it would be fun to have a group attend from our area. We'll be thinking in terms of incorporating it into our future vacation plans.

Our meeting was adjourned at 11:40am, but many of us stayed in the room and continued talking well past 12:30pm.

Notes taken by Gladys Swensrud

January 12th, 2008 Meeting Report

If you missed our January meeting, you certainly missed a terrific gathering. There were twenty-two in attendance and the two hour discussion was lively and entertaining throughout.

It is evident that our group bonds closer and closer each time we assemble. Attending support group meetings on a regular basis encourages strong friendships by the sharing of our unique polio experiences. Polio brought us together, but it is the warm feeling of camaraderie that cements our closeness.

Our San Diego group facilitator, Rick Kneeshaw, works hard throughout the year to bring pertinent topics, applicable to each of us, to the table for discussion, and this month's theme was no exception. Rick opened our meeting with member introductions and then quickly bowed to our favorite in-house, guest moderator, Steve Goldman. Each January, Steve leads us in a roundtable discussion titled, "What Works for You" where we discuss items or ways of doing everyday tasks, which make life easier.

The following were suggestions made by our members:
Steve-
Reachers/Grab-its - He showed us his favorite type, a 31 inch grabber that had suction cups at the end for grasping items as small as coins or as thin as a sheet of paper. Steve purchased his grabber at the Ability Center, but he noted they can be found at pharmacies or home improvement stores citywide. This particular style comes in a smaller 19 inch size as well, and it locks for two-handed convenience and folds away for easy storage.

A hook at the end of a common dowel (judged from the audience vantage point to be about ˝ inch in diameter & 30" long) can work wonders for snagging odds and ends just barely out of finger reach, such as to pull a sock or shoe closer. Steve keeps one close at hand by his bedside.

He also shared a folding bath seat with telescoping legs. It was lightweight but very sturdy with suction cups on each foot. He estimated the price between $50 and $60, but he felt it was well worth the cost. He packs it in his luggage and takes it when he travels to make all baths and showers more handicapped accessible. He added that he is modifying his model to include wheels for easier transfer from his wheelchair through hard to access narrow bathroom doorways. This collapsible seat can be found at Drive Medical Equipment.

He reminded us that Universal Design was one of our meeting topics in 2007, and Steve noted that you can find accessible suggestions for home improvement ideas at http://www.udll.com.

Joanne-
Joanne uses a walker by Nexus, which can be found at Nexus Medical Equipment (613-723-6734). Her walker narrows by a quick tug at the center line to enable easier access through narrow doorways. The back rest reverses so you can sit if needed facing on either side of the walker to be pushed or pulled. It is light weight and has adjustable, telescoping hand-holds.

Rick-
He brought along a small triangle, about 2 inches thick, made out of wood, with rubber protectors on the bottom, which made the triangle resemble a very short stool. Rick uses the wood as a footrest in public places like church or a movie theater so that his braced leg doesn't dangle without support when he sits for any length of time. He keeps the footrest and light weight blanket in a small tote in his car at all times so it is handy whenever he needs it.

He also displayed cotton tubular stockinet, which he purchases by the box and he uses daily to cover his leg before putting his brace on. The tubing is washable, so when the skin sweats, the sweat is absorbed by the cotton tubing, which keeps his brace clean where it would otherwise contact the skin. It also serves to keep his leg warmer, which is a double advantage since his paralyzed leg is always cold.

Next he displayed an inverter, which he uses to plug into the lighter of his car to recharge the battery on his scooter between uses when he is on the go. Rick said the inverter can be found almost anywhere. When asked what the wattage was, he said they range from low to very high watts, but his sample was a 150 watt inverter, which he bought Costco, but he said Home Depot and lots of other area stores sell them.

Rick shared a package of Icy Hot patches, and he explained that he uses them on achy muscles for long lasting soothing effects when he has overdone. Joanne added that she uses the Icy Hot Gel at night on her painful knees, and it works equally as well.

Lastly Rick displayed a metal grab bar, and he made a suggestion to mounting them in the vertical or diagonal placement on walls, potentially allowing better grasping power to pull up from a sitting position. He cautioned to be sure to have the bar installed correctly in studs to give it secure holding power.

Don-
Brought up the subject of hydraulic chairs for comfort in getting in and out of a comfy chair. Don felt the approximate $1,000 price tag was well worth the muscle it could save. He explained that an XL size (good for people over 6 Ft. 4in.) is only a bit more costly, but a good fit is essential. He said his model is made by Pride and they can be adjusted to fit most physical comforts, and it was purchased at Pacific Mobility in San Marcos, but another suggestion was Best Chair Company.

Don also shared the cane he found at http://www.canesgalore.com . It has an ergonomically designed handle to take stress of the palm of your hand. They also have a "clip on cane" which allows you hang your can in many places. They also have canes with straps for hanging.

He also explained the virtues of a lightweight garden stool, which you can find at http://www.step2.com, called a garden kneeler & seat on line for approximately $20. Don suggests that you not buy it from Wal-Mart since they want more money for the same item. It is a seat, which has handles to allow you to work in the garden or house without having to kneel on the ground. It also has handy hand-holds to make rising easier. Don said he has three of these stools, which he uses in the yard and around the house.

Michael-
To this same topic, Michael added that it is wise when thinking of purchasing an easy chair to take a book to the store and sit in the chair for an extended period of time, just as you would when watching TV or reading at home in your living room. What seems comfortable when sitting for 5 minutes might not be as pleasing after an hour or two.

Cathy Jo-
Cathy Jo furnished everyone with a great treat, a protein bar called Bora Bora by Wellements. It is a very nutritious way of getting a fast protein snack.

She also demonstrated a folding wheelchair product by Compax. It folded very compactly, identically to a lightweight stroller. The item costs about $1000 but it is guaranteed for the life. (I tried to locate her specific item on the web, and although the sites I visited had discontinued the Compax, I found many, many other collapsible wheelchair choices available.)

Gladys-
Because of arm muscle weakness in lifting above her head, in purchasing new kitchen appliances, she made the decision to place her microwave below the counter. She brought to the group's attention that both Décor and Sharp make a microwave drawer. The drawers open and close at the push of a button. Drawer access makes it easier to put heavy casserole dishes in and take them back out. There is also no need to lift in order to stir items during the cooking cycle. Both companies have the program controls at the top of the unit, which makes bending to program them unnecessary; however for those in wheelchairs the controls are conveniently at eye level.

Another option is a microwave with a drop down door by Kitchenaid. The controls are also placed at the top of the unit for easy accessibility when placed under a counter.

When transporting her scooter on her car lift, Gladys explained that although she has a hydraulic foot which holds her scooter in place, for extra security on the lift, she uses cinch straps (found at camping supply stores) at each wheel to further tie down and secure her scooter for the road. (Keeping disposable rubber gloves at the ready keeps hands clean after cinching it down.)

Marilyn-
Suggested a mechanics chair, which rolls around allowing better mobility in the kitchen, or hip chairs, which are designed to benefit the user with partial or total hip replacement, arthritis, or knee surgery. The higher seat of the hip chair can make sitting down and getting up easier by minimizing the movement of hips and knees.

We were reminded of other well known conveniences like installing a handicapped toilet or adding a toilet extension. That is one thing everyone can easily do to make life just a little bit easier.

Mike B. very generously shared copies of a CD with each of us on the history of Sister Kenny and her method of relieving polio pain. Thanks, Mike, for giving of your time and for going out of your way to enlighten us about the history of polio!

Gladys spoke briefly about her participation in Kingfisher Americas' (a subsidiary of the Belgium based Kingfisher Healthcare) clinical trials for their KFH energy device. She explained she felt the device had been of benefit to her and summarized her unique respiratory approach to an objective evaluation of the unit. Kingfisher Healthcare is expecting FDA approval for their equipment shortly, but in the meantime they are offering the post-polio community an opportunity to use this device and report back to Kingfisher on their personal findings. Flyers were available to explain the program and included contact information for Roy Whitaker, Kingfisher's Senior Managing Director & VP Strategy and Business Development: (877) 252-4374 ext 708. You many also email him at: r.whitaker@kfhealth.com.

Rick took a few moments to recognize the passing of Mary Clare Schlesinger who was an advocate for polio survivors everywhere. Mary Clare was best known for her unwavering commitment to inform as many people as possible worldwide about polio and the aftereffects, better know as Post-Polio Syndrome. She was instrumental in coordinating several symposiums, which were held at San Diego's world renowned Salk Institute.

Notes taken by Gladys Swensrud

Respect-ABILITY Conference

RespectABILITY Conference 2008 will focus on identifying and sharing effective strategies and best practice models to achieve the Disability Rights Agenda.

Join hundreds of persons with disabilities and disability rights advocates from throughout California as we come together to discuss, share and learn about issues that impact and are important to the disability community. Learn about emerging issues, strategies and advocacy tools that can help you protect your rights and make positive changes in your community.

IMPORTANT NOTE: Respect-ABILITY CONFERENCE RESCHEDULED FOR MARCH 2008

We are very sorry, but due to construction temporarily affecting the accessibility of the conference hotel, the Respect-ABILITY Conference is being rescheduled for March 7-8, 2008

For those of you who have already registered for the original October 12-13, 2007 Conference, You do not have to register again -- we will keep your registrations and send you a reminder in January.

If you have already paid for the conference, you have the option of full refund or leaving your payment and you will be fully registered and prepaid for the March conference. We will be contacting each person that has prepaid, and you can let us know your decision.

We will make every effort to contact each of our registered participants personally. In the interim, if you have any questions, please contact Marianne Brazer or Sasha Yu at 213-252-7438. TDD 213-736-8310

We look forward to seeing you at the

Respect-ABILITY Conference 2008!

Date: March 7th and 8th, 2008
Location: LAX Marriott Hotel
5855 West Century Boulevard,
Los Angeles CA 90045

For more information on how to join the RespectABILITY
Coalition or the RespectABILITY Conference 2008 contact: John Longoria (213) 7368365, (213) 7368310 (TDD), or at john.longoria@lls.edu

Click here to learn more about attending the conference

An Invitation from Polio Survivors Plus to Hear Dr. Carol Vandenakker

Polio Survivors Plus, an Orange County based polio survivors group has been successful in arranging for Dr. Carol Vandenakker to be the guest speaker at their February 20th, 2008 meeting.

They have invited the members of all other area polio survivor groups to attend there meeting to hear Dr. Vandenakker's presentation.

Dr. Vandenakker is an Assistant Clinical Professor in the Physical Medicine and Rehabilitation Department at the University of California, Davis, School of Medicine. Dr. Vandenakker is the Director of the Post Polio Clinic at Davis and has published a number of scholarly papers dealing with polio and post polio syndrome. It's a rare opportunity to hear from a Doctor who is actively doing research into post polio syndrome. Don't miss the opportunity.

The talk will be from 1:30 PM until 3:30 PM at Laguna Woods (formerly Leisure World). For additional information contact Gene Minder at 949-830-9347 or Bernie Sota at 949-951-4973.

Click here to request additional information on Dr. Vandenakker's talk

November 10th, 2007 Meeting Report

Featured at our November 10, 2007 Meeting were Dane Holderman and Melanie Arledge from Progressive Medical. They presented a slide presentation on breathing issues for polio survivors especially all of those who suffer from sleeping disorders. This was of particular interest in light of the current smoky conditions resulting from the recent fires in the San Diego area.

They first discussed the various types of Sleep Disordered Breathing starting with Obstructive Sleep Apnea versus Central Sleep Apnea. They explained the physiological differences of OSA and CSA. A visual slide of the upper airway showed the various tissues that collapse when the patient falls asleep; known as OSA. Another visual slide showed where the drive to breathe initiates, in the primitive portion of our brain known as the Medulla Oblongata. The lack of the brain firing the signal to breathe; is known as CSA. There are only 3 known reasons why a person would exhibit CSA: either the person was born without an inherent drive to breathe but survived infancy, or a head injury has occurred, or there is cardiac involvement. The main topic of the discussion centered around Neuromuscular breathing or lack of. Visual slides showed the Respiratory Muscles that relax and contract while we breathe, known as the Diaphragm and the Intercostal Muscles. Post Polio Syndrome, being a progressive neuromuscular disorder, eventually looses the use of these muscles, therefore needing nocturnal ventilation, to replace their diaphragm.

Significant time was spent explaining the misdiagnosis of sleep disorders in the neuromuscular patient and how to go about evaluating this community appropriately for breathing disorders.
The most accurate evaluation of a neuromuscular breathing disorder is to perform a breathing test; known as Pulmonary Function Testing, and the capture of End Tidal CO2 all done why the patient is lying down, without the aid of gravity. If the patient fails the testing, the muscles are compromised and the patient qualifies for Non-Invasive Ventilation.

Dane demonstrated the use of the Spirometer by testing Melanie's Pulmonary Functions. Two simple tests were performed. First he asked Melanie to inhale as deeply as she could using a MIP (maximal inspiratory pressure) gauge, showing her ability to breathe in. Next Dane asked for Melanie to exhale for a FVC (Forced Vital Capacity) using the spirometer, to show her ability to exhale. All respiratory measuring devices are calibrated to manufacturers specifications governed by the FDA.

Melanie announced the news that Progressive Medical is the only Home Respiratory Company winning the honors of Accreditation for 3 years in this region. They are one of sixteen companies across the United States specializing in Neuromuscular Ventilation. Making Progressive Medical a premiere respiratory company.

Next they explained the advantages and differences in the types of devices used to support breathing. Dane discussed that CPAP and/or a Bilevel S devices are used to splint the airway open in the Obstructive Sleep Apnea patient only. These devices can not support weaken respiratory muscles found in progressive neuromuscular patients or aide in Central Sleep Apnea which is the lack of the firing mechanism in the brain. Non-invasive Ventilation is the device required to "give breath" to CSA and NM patients. When there is an absence of breath either from lack of muscle movement or non-firing of the brain, the Non-invasive Ventilator kicks in and gives a breath to patient, washing out retained CO2 and supporting the proper oxygen level. Dane was very clear that oxygen alone is not appropriate to support ventilation. Oxygen alone, without a form of ventilation increases CO2 levels further compounding the patients' condition.

They also discussed the differences in the Non-invasive Ventilators from Manufacturer to Manufacturer. In an effort to follow a progressive neuromuscular patient and prove efficacy, the NIV device should able to record real time showing various types of data the most important data are the Spontaneous Breaths, this shows how many breaths the patient is able to initiate and how many breaths the device breathed for them. Many of these devices have the ability to record and store data up to 365 days. This allows the clinician to monitor the progress or set back of their clients. All devices should have a heated humidifier to aide in lessening mucosal swelling and moistening the air being introduced to our lungs. Depending on whether the patient is a mouth or nose breather there are various types of masks and pillow interfaces. The presentation lasted more than an hour and the members were exposed to a lot of the process in determining what type of sleeping problems they might encounter.

Melanie and Dane stressed the importance of PFTs and benchmarking your progress yearly. Progressive Medical offers free evaluations. They stated if you are interested in taking them up on their offer, they simply need a prescription from your current doctor allowing the evaluation. The script should request "Pulmonary Evaluation of Post Polio Patient". Please inform your doctor these are free of charge to you.

It was interesting to learn that approximately 50 % of diabetes patients suffer from sort of sleep apneas. There are a number of studies currently being done on the benefits on sleep therapy and the reduction of blood sugars in diabetic patients. Dane explained the action of metabolism during sleep and its effect on blood sugar reduction in these studies.

Dane Holderman attended the University of Arizona and graduated with Honors, Phi Beta Kappa with a Bachelor of Arts in Psychology.

Dane was introduced to the field of Sleep Research while working as a Research Assistant at the University of Arizona Sleep Lab, supervised by Richard R. Bootzin, PhD. where he acquired general
knowledge of the psychological and theoretical basis for studying sleep in humans. He was also exposed to a variety of aspects of sleep research, working with both adults and children, studying
issues such as insomnia and depression.

He applied for, and out of numerous applicants, solidified the prestigious William C. Dement
Apprenticeship, duly named after the renowned Board Certified Sleep Specialist, at Stanford University. His externship consisted of training in the field of Polysomnography thru the Bradley Sleep and Chronobiology Lab at Brown University.

Upon graduation he became the Lead day PSG technician at the University of Arizona, Respiratory Sciences Sleep Lab. Dane worked mainly on the APPLES study (apnea positive long-term efficiency study), where he became familiar with many different types of sleep disordered breathing.

In December of 2006 Dane relocated to San Diego and started working for Progressive Medical, a home respiratory company, well known for their specialty in Neuromuscular Ventilation.
He has been fully immersed in learning the proper way to ventilate this very unique community. His education has included attending the American College of Chest Physicians conference on Noninvasive Ventilation this past June held in Canada.

Dane assists the ALS community through the UCSD ALS clinic performing Pulmonary Function Testing needed to follow the disease progress. He has had tremendous exposure and enjoys
working with the Post Polio patients that are on service with Progressive Medical.

Following this presentation, there was much discussion (for another hour and a half) between the members and our speakers about many of their experiences and getting answers to their questions and experiences.

Rick Kneeshaw described his recent activities with the Legal Foundation up in Los Angeles and a presentation he made to the Loyola School of Law in Los Angeles.

Don Baisch substituted for Gladys Swensrud and presented the results and achievements from the Kaiser San Diego Neuromuscular Sleep Lab.

Submitted by Donald Baisch

September 8th, 2007 Meeting Report

The guest speaker at our September meeting was our very own PPS Manager, Rick Van Der Linden. We tremendously appreciated that he drove the 100 mile round-trip distance between Hemet and San Diego; he shared not only his thoughts on respiratory issues, but, to the delight of all in attendance, he entertained us with his guitar and harmonica talents as well.

Although this might veer from the traditional meeting report, I have a rare opportunity to sing Rick's praises and, at the same time, cover an issue about which he has asked me to write and share some thoughts - volunteerism. Volunteering takes many forms. In Rick's case, I know first hand that he: travels to speak to various groups within southern CA, spearheads the Hemet Area Polio Survivors (HAPS) group, writes and edits our local area PPS newsletter, answers endless questions posed to him via email and phone calls about respiratory issues, constantly updates the PPS Manager website, picks up HAPS members without transportation prior to meetings to be sure they have a ride, drives ill friends to doctor and hospital appointments, etc., etc. Without hesitation, Rick gives of himself and his time doing kind things for others and helping wherever a need exists.

Volunteering is good for the soul! Helping others tends to take the focus off of self and places it where it has the potential to do greater good. There is a particular feeling of warmth of heart which comes from helping a child or giving of your time to assist a friend in need.

Regardless of your skill level, there are many ways in which each of us can volunteer to help improve the communities in which we live. We can offer to tutor students at a nearby school; we can volunteer at our neighborhood library. Reading to a youngster is one of the most valuable gifts which you can share with a child. While improving their reading skills, you are simultaneously also giving them a bit of your time and attention, both commodities in increasingly short supply in today's hurried world. And don't forget, seniors in nursing homes need that one-on-one attention as well. They love playing cards or games. Just having someone to sit and talk with them can bring sunshine into an otherwise mundane day.

Even those of you who are homebound can do things to make a difference. You can volunteer to help your PPS group facilitator phone group members prior to meetings. You can answer the call of national PPS groups to support legislation to help the disabled. You might do something as simple as making cookies for a friend. If it makes your heart smile with happiness, then you know your time has been well invested.

Thanks, Rick, for all you do, but especially for what you do to improve communication within PPS groups throughout our state. That contribution alone is priceless in more ways than you can imagine!

Reported by Gladys Swensrud

July 14th, 2007 Meeting Report

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Joanne Price

There were fifteen people present for our July meeting. Those who took time from their busy summer schedules to come were treated to a dynamic presentation by Joanne Price, Fall Prevention Educator and Owner of ResponseLink. ResponseLink is an at-home safety, medical alert system allowing two way communication, 24/7 response in case of an at-home emergency. Joanne, who has taught fall prevention for a decade, was not only well versed in the topic of falls, but her easy, humorous delivery thoroughly entertained us.

Joanne often presents to groups in excess of 100 people. And, she regularly informs and entertains at gatherings sponsored by the Parkinson's Disease Association of San Diego, as well as other community organizations.

Her presentation was jam packed with usable information that we could immediately put into practice. Her hand out contained a summary of ways to immediately get started being safer in each room of the house. As Joanne noted in her introductory remarks, 30% of all falls can be avoided. Taking steps to assure one's safety at home is of utmost concern. And she explained there are ways to minimize the risk of home falls by taking some easy, inexpensive first steps.

With her handout as a guide, we traveled together, room to room, learning what changes would be the easiest and most advantageous for us to make right away. At the top of her list, we found a common source of falls in any room is inadequate lighting. Most of us have had the experience of entering a dark room and, while reaching for a lamp, stumbled over a chair slightly out of place or shoes left in the middle of the floor. Joanne offered handy, inexpensive portable lighting suggests for illuminating the path along a dark hallway and into a dark room.

We discussed the fact that the bathroom is the room where most serious injuries occur. The reasons for this are multi-fold:

- Bathrooms are where we go when we are in our most vulnerable state.

- If we are sick and moving from the bedroom to the bathroom, we might be physically at our weakest.

- When we use the bathroom at night, we are often half asleep and are reluctant to turn on the light, waking us still further.

- Bathrooms are filled with hard surfaces from the floor-to the countertop-to the toilet-to the shower-or even to protruding towel bars and other dangerously protruding edges.

- Because the room is small, it is possible to get wedged next to or under any of the above.

- There are often throw rugs, which can trip the unsuspecting.

- Many oils, lotions and soaps can make standing or leaning surfaces slippery.

Joanne had several other cautions for the bathroom as well. As we followed her logic, we understood why that room in particular put those with muscle and standing issues particularly at risk of falling.

A few of her many, many household suggestions were to install grab bars for handy access near toilets, bathtubs and sinks, make sure most often used kitchen items could be reached without having to step up onto a stool, and to always wear proper footwear. Joanne shared that although going barefoot feels good at home, wearing shoes is better for secure footing when you step.

Joanne Price has written a book titled: "Fall Injury Prevention for Older Adults...and Those Who Care About Them." She graciously shared a copy with our PPS group. I would say it is a must read; she covers everything from: balance, to medications contributing to falls, to helpful dietary hints...and everything in-between.

You can reach Joanne for speaking engagements for your group by calling: 1-760-633-2227. Or you can contact her through her website at: www.fallpreventioninfo.com. Her book, which was newly published in 2007, can be ordered through www.amazon.com, www.barnesandnoble.com or through the publisher at www.iuniverse.com.

Click here to learn more about Response-Link

ABILITIES Magazine Article on Zoo Lawsuit

abilitycover077.jpg

The "Teri Garr" issue of ABILITIES magazine, volume 2007, features an article about our successful lawsuit against the San Diego Zoo to protect your rights to enter public places on scooters, or in electric wheelchairs, without being forced to sign legal waivers. Hopefully all persons who are physically disabled will read the article and understand that requiring unusual or additional entry procedures for the disabled is illegal under the Americans with Disabilities Act (ADA).

Click here to learn more about ABILITIES Magazine

May 12th, 2007 Meeting Report

Our guest speaker in May was architect Michele McLain, AIA. Her program, "Accessible Living for the Physically Challenged" was a great combination of slide presentation and handout. Michele began her visit by noting that each person is an individual, so our needs are uniquely individual as well. In home building and/or remodeling, the home owner generally tries to anticipate future physical challenges to incorporate into their plan. Michele explained that by using an architect, the professional can suggest many useful additions which should make your planning process flow much smoother.

Michele added that those experiencing PPS are pioneers in the art of aging. As polio survivors, we are facing many early limitations, which the general population will also encounter as they age. She mentioned that "Universal Design" is a fairly new buzz word, but Michele felt we were the originators of that term because our needs prefaced its use.

Some remodel ideas are basic, like adding handicapped toilets and grab bars, but there are many, many ideas that could be combined with your plan to help you live more comfortably in your home for as long as is physically possible. An architect can assist you in anticipating some of your unique needs and goals, thereby eliminating potential future barriers.

A few of the many suggestions Michele had to offer were:

A five foot turning radius at the entry to your home so you can turn and close the door.

Use a swing clear hinge on interior doors to gain the width of the doors for entry and exit.

Trash bins that tilt out toward the user

Installing lever handles on all doors makes for easier use for everyone in the home.

Flooring thoughts -
1. Ceramic flooring should be non-skid.
2. Use resilient flooring that is not too light to show scuff marks or too dark to reduce visibility.
3. Vinyl is good for people who wear braces.
4. Carpeting should have a thin pad or none at all so as not to impede wheelchairs or walkers.
5. Carpets should be glued down or stapled in place.

In kitchens, entertain 48" isle widths for easier maneuvering.

A wheelchair user might consider a 34" counter top a better access height.

Some parting thoughts Michele shared were:

As you begin planning for that remodel, you might want to allow twenty to thirty percent for overruns and project costs, which you may not anticipate.

She encouraged everyone beginning a redo project to find and watch Mr. Blandings Builds His Dream House. It is a 1948 comedy in which a man (Cary Grant) and his wife (Myrna Loy) decide they can afford to have a house in the country built to their specifications. It ends up being a lot more trouble than they think!

Being disabled doesn't trump zoning, so Michele suggested checking all zoning regulations prior to entertaining a remodel.

Michele McLain's territory covers most of San Diego County, but she generally services the north county. You can reach her at:
Michele McLain, AIA
P.O. Box 905
San Marcos, CA 92079
Telephone number: (760) 743-1955
Fax number: (760) 743-1919
She can also be reached by email at: mclainaia@aol.com

Tips from Dr. Bruno

T'N'T: Tips and Techniques for Polio Survivors
Exercise: Use it and Lose it
by Dr. Richard L. Bruno

<<I read that you don't recommend exercise for polio survivors who are getting weaker. But if I stop exercising and do nothing, won't I lose muscle tone, get flabby and become deconditioned and become weaker still?>>

You're asking a good question but are using buzz words that Americans hear on infomercials. It's vital that polio survivors understand what the research really says about exercise for newly-weakened muscles and know the definitions of "muscle tone" and "deconditioned."

We never tell polio survivors to "do nothing." Both The Post-Polio Institute and Warm Springs long-term follow-up studies find the same thing. All PPS symptoms, fatigue, pain and muscle weakness, decrease when polio survivors stop exercising and follow The Golden Rule: If anything causes fatigue, weakness or pain, DON'T DO IT! (Or do much less of it.)

Unfortunately, those who recommend strengthening exercise to polio survivors quote from the conclusions of a half-dozen small studies of leg muscle strengthening, apparently without having read them critically. The studies' conclusions say that exercise programs "lead to significant gains in strength."
However, when you look at the responses of individual subjects the "significant gains in strength" are hard to find. Just over half of the studies subjects had an increase in upper leg muscle strength of about 26%. One quarter had no change in strength while 21% actually had a decrease in strength of about 10%.
So almost as often as not exercise either had no effect or actually decreased muscle strength.

What's more, only two studies asked whether exercise affected polio survivors' fatigue and their ability to function in their daily lives. In one study, strength increased by 36% but muscle fatigue also increased by 21%. In the other study, although muscle strength increased by 30%, there was no improvement in polio survivors' ability to do daily activities, and muscle fatigue increased as much as 300%! You have to ask whatgood comes from any small percentage increase in muscle strength that is not related to improved functional ability and that actually increases muscle fatigue more than strength.

And what of "muscle "tone"? Most people think that muscle tone means muscles that are firm and have a nice shape. Muscle tone actually means that muscle fibers are ready to contract. Muscle tone is lost when motor neurons are
damaged and can't turn on muscle fibers. Loss of tone can happen when polio survivors exercise too much and muscles become weaker when poliovirus-damaged motor neurons fail. Remember, PPS researcher Alan McComas found that polio survivors who have muscle weakness lose at least 7%
of their motor neurons each year (see PPS Forum June 2001). This is why he concluded that "polio survivors should not engage in fatiguing exercise or activities that further stress metabolically damaged neurons that are already overworking."

Polio survivors' muscles get smaller lose tone if they're overused and the motor neurons that turn on the muscle fibers die. Arms and legs get flabby because of increased fat deposits, not a loss of muscle tone. Exercise does
burn fat and at first causes muscles to increase in size. But polio survivors don't want bigger muscle fibers because they "further stress metabolically damaged neurons that are already overworking." The best way to prevent flabby arms
and legs is to stop overusing and abusing your motor neurons and to follow the higher protein, low fat and lower carb Post-Polio Diet (see PPS Forum July, 2002).

And what does "deconditioned" mean? Many polio survivors believe that there are only two ways to live: overusing and abusing or being a couch potato and becoming "deconditioned." Deconditioning is something that happens when astronauts live in space or you put someone to bed for weeks, removing the pull of gravity and causing a decrease in blood volume and blood pressure.
Deconditioning can only happen if polio survivors never leave the couch, not if they take two daily rest breaks on the couch, take a ninety minute nap, stop strengthening exercising or use a power wheelchair.

However, polio survivors may need to "condition" their hearts, especially if they have had a heart attack. "Cardiopulmonary conditioning" uses exercise to
strengthen the heart muscle (which was not affected by polio) and make it work more efficiently. However, there is no benefit to running on a treadmill or riding a bicycle to exercise the heart if you thereby stress and kill off
poliovirus-damaged motor neurons. Many polio survivors can do heart conditioning by using their less affected limbs, usually their arms, in a carefully monitored program of paced and non-fatiguing exercise (see PPS Forum May
2001).

Dr. Richard Bruno is Chairperson of the International Post-Polio Task Force and Director of The Post-Polio Institute and International Centre for
Post-Polio Education and Research at Englewood (NJ) Hospital and Medical
Center. His book, THE POLIO PARADOX: UNCOVERING THE HIDDEN HISTORY OF POLIO
TO UNDERSTAND
TREAT "POST-POLIO SYNDROME" AND CHRONIC FATIGUE , is published by Warner
Books. (AOL Keyword POLIO PARADOX.) E-mail questions to him at PostPolioInfo@aol.com.

San Diego Polio Survivors January 14, 2007 Meeting Report

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Our Saturday meeting was a smorgasbord of wonderful information. To open this month's gathering, Steve Goldman led a discussion about the ways in which our lives have taken positive turns as a result of having had polio. Steve noted that although we each have ways in which our lives could been different, we had no control over contracting polio, so we moved forward in positive ways, and that is what he wished to bring into focus.

The general thread, which ran through this segment of the meeting, was that the typical, type A personality trait, which gave us the strength to overcome our original bouts with polio, also gave our children a special understanding of how we met life's adversities with a "can do" attitude. That permeated the very being of their existences as well and translated to a similar strength in the way they approached their lives. We generally agreed that our children are strong, sensitive young people, perhaps owing, partially at least, to the way they observed us interacting with others and living determined lives in spite of any residual effects of polio.

Gladys Swensrud filled the last few minutes with a presentation on several useful kitchen gadgets designed to make life easier for the muscle challenged. She mentioned that although the kitchen was once her favorite room in the house, it is now the source of some of her greatest daily challenges. To minimize those concerns, she planned a visit to Kitchens Plus at North County Fair to see if there were some new ideas for simplifying her daily kitchen responsibilities.

The helpful staff at Kitchens Plus wandered the store with her and came up with many tremendously helpful items such as: an easy-grip ice cream shovel to replace her tiny metal scoop, several easy-to-hold handled dry-scoops of various sizes for sugar and flour canisters, and a jar opener with teeth to grip those difficult to open peanut butter jars. Gladys's experience was extremely useful to shore up some of her personal kitchen needs, and she recommended a visit to your nearby kitchen shop as an outing soon.



By Gladys Swensrud

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Our Dear Friend and Long Time Member, Bob Hudson, Passes Away

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Bob Hudson

Robert W. Hudson, 77, died of natural causes Saturday, Dec. 30, 2006,
at Scripps Green Hospital in La Jolla.

Mr. Hudson is survived by his companion of five years, Alice Gowing of San Marcos; sons and daughters-in-law Donald and Julianne Hudson of San Marcos and Dean and Meg Hudson of Mission Viejo; daughter and son-in-law Marlene and Vern Cunningham of Riverside; brother C.B. Hudson of Gainsville, Ga.; eight grandchildren; and three great-grandchildren.

A Mass will be celebrated at 2 p.m. Saturday, Jan. 13, at St. Mark's Catholic Church in San Marcos.
A private cremation is planned.

The following information on Bob is edited from his profile which he wrote for our website over two years ago. Reading it will give you some insight into Bob's humor and ever positive attitude which he used to entertain us all at every meeting he attended. We will miss him. [Rick]

I am a native Californian, born in San Francisco, the city by the sea and moved to Los Angeles when I was 4 years old. I have one brother 16 months older. We were raised by my Mom and grandma until I was 14 years at which time my Mom got remarried and we moved to another home in the south part of Los Angeles.

I completed high school in 1947 and after a short stint at Douglas Aircraft Copany, I joined the Merchant Marine with four of my friends. I was able to go through the Panama Canal both ways via Kobe Japan.

I went to work for the telephone company in 1948 as an installer then got married in 1949. Our first child was born 9 months and 13 days latter (phew!) followed by our daughter 12 months later.

We purchased a home in Manhattan beach in 1952 and 8 months later I contracted Polio and was taken to Los Angeles County General Hospital and placed in an iron lung. My life with Polio had begun with total paralysis. I was moved to Rancho Los Amigos 3 weeks latter. I remained there until I no longer required respiratory assistance. Then in December 21 1952, I was moved to Kabot Kaiser Institute in Santa Monica where I underwent intensive therapy for 14 months (8hrs a day, 5 days a week) I was released in April 1954 being able to walk and take care of myself. Fortunately I still had my wife and 2 lovely children at home.

I returned to work in July of that year after some help from our local union. I remained in a craft assignment until I was promoted to management in 1964, and after various assignments, I wound up in interoffice engineering specalizing in fiber optic cable.

I have enjoyed flying and boating. I was president of the International Wheelchair Aviators for 2 years, 1993 to 1995, during which time we flew once a month to various locations in California, Nevada, and Arizona for lunch.

While I was living in Manhattan Beach, I assisted my neighbor in the construction of 12 small boats and in 1966 I owned a 26 foot sloop which we used to go to Catalina and catch fresh lobster for dinner.

After one more boy in 1958, 3 wives, 1 broken nose, 1 dislocated shoulder, 2 broken legs, 8 grandchildren, one great grand child, and an 8 year stint with another woman, I have settled down in my quiet little cottage with a caregiver, a rampvan and electric wheelchair, and a lovely lady I see quite often. Life is good (but I'm getting nervous!!)

Bob Hudson

writ by hand, age 75




ADA Lawsuit with San Diego Zoo Settled

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Rick and Gladys Celebrate

San Diego Zoological Society Settles Case Alleging Discriminatory
Entrance Policy for People with Mobility Disabilities at the
San Diego Zoo and Wild Animal Park


SAN DIEGO (NOVEMBER 29, 2006), The Disability Rights Legal Center (formerly Western Law Center for Disability Rights) announced today that it has reached a settlement with the Zoological Society of San Diego to end what it alleged were discriminatory practices against people with mobility disabilities. The settlement was reached in the federal suit Kneeshaw v. Zoological Society of San Diego, Case No. 05-CV-2127-IEG DT (POR), and covers both the World Famous San Diego Zoo and the Wild Animal Park.

As a result of the settlement, the Zoological Society will permanently discontinue its policy of asking people who use motorized mobility aids, such as motorized scooters and wheelchairs, to sign liability waivers or any document regarding their use of such aids in the Zoo or Wild Animal Park. As for previously signed waivers already on file under its prior entrance policy, the Zoological Society has agreed to void all such waivers and never enforce them. In addition, it will notify those who have signed or been deemed to have signed the waivers by putting a notice on its website, its maps, its accessibility guide, and via letters to those who had been subject to the previous policy.

"We are extremely pleased that we were able to reach a resolution with the Zoological Society" said Shawna L. Parks, Director of Litigation at the Disability Rights Legal Center, the nonprofit legal organization that represented the plaintiffs. "The settlement allows people with mobility disabilities to once again enjoy their visits to the Zoo without hindrance or discrimination. The Zoo agreed to do the right thing here."

Named plaintiff Gladys Swensrud, a long time member of the Zoological Society, was very pleased with the result. "Although I'm sad about the time I lost at the Zoo, I eagerly look forward to resuming my visits to the Zoo with my friends and seeing the animals together," she said.
The settlement represents a major victory for people with mobility disabilities who use motorized scooters and wheelchairs. In November of 2005, plaintiffs Rick Kneeshaw and Gladys Swensrud, both polio survivors, motorized scooter users and long time members of the Zoological Society, filed the lawsuit against the Zoological Society claiming that the entrance policy, which mandated that motorized wheelchair and scooter users sign a liability waiver in order to enter the Zoo, unlawfully discriminated against people with mobility disabilities.

Under the Zoo's policy, persons who used motorized wheelchairs and scooters were pulled from line, presented with a series of documents, and required to sign a waiver and indemnification agreement before being allowed to enter the Zoo. The waiver placed all liabilities and risks on the person with a disability for incidents at the Zoo involving the mobility device, even if the Zoo or its employees were at fault. No other Zoo patrons were subjected to this treatment or forced to sign such waivers in order to visit the Zoo. The suit alleged that the Zoo violated the Americans with Disabilities Act and California civil rights laws, and sought a court order to remove the illegal and discriminatory policy and waiver requirement.

"I'm glad that we were able to convince the Zoological Society that it is the right thing to do to stop this policy. I just wanted to bring my granddaughter to the Zoo. She was looking forward to seeing the elephants, and I was so embarrassed to be pulled out of line, and treated like a criminal in front of my granddaughter," said Mr. Kneeshaw. "I'm glad I got to show my granddaughter that it is important to stand up for our rights and make a change for the better. I can't wait to go back to the Zoo."

The plaintiffs were represented by the Disability Rights Legal Center, a thirty year old non-profit organization that protects the civil rights of individuals with disabilities.


Click Here to See the Local Press Coverage of the Zoo Settlement








Carlos Valenzuela's Presentation on Warm Springs, Georgia

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The first San Diego Polio Survivor's meeting held at our new, Kaiser Permanente/Zion Hospital location on November 11, 2006, was a huge success! Our turn out of 30+ was fantastic, and as a result of the change from the workday Thursday to a more convenient Saturday, we welcomed many new members. Introductions enabled us to greet returning members and gave us an opportunity to learn a little about our new members.

The guest speaker for the day was Carlos Valenzuela from Progressive Orthopedics.
Carlos immediately told us his talk would barely touch on his expertise in the field of bracing since the topic for this presentation was his recent trip to the Roosevelt Institute at Warm Springs, Georgia. However, when he did discuss the physiology of bracing, we were all impressed with his vast knowledge and experience. From Carlos's enthusiasm, we could sense that as his professional career in bracing is winding down, he has become more and more interested in the history surrounding his decades long profession.

Carlos transported us via a slide presentation on each mile of his trip from San Diego to Georgia and back. He told us this excursion had been originally planned to include polio survivors, but for various reasons by the time of departure, all survivors planning to go had dropped out. He felt fortunate to have two of his fellow orthotists from San Diego accompanying him on this journey.

As the program began, Mr. Valenzuela explained that from the Atlanta Airport the drive to Warm Springs is approximately 63 miles. He showed us a slide of the original entrance to Warm Springs, which is no longer used. He said it could be the condition of the historic old entrance and road which prevented it from being used any longer, but the new road was quite accessible. He said during the drive he could sense the emotions a visitor with polio must have felt back in the 1930s/1940s, filled with hope of rehabilitation as they drove past the entrance and onto the grounds.

Roosevelt set the buildings up more like dormitories, rather unlike a traditional hospital. Carlos took us on a "virtual tour" through the facility and along with accompanying slides told stories of the history and of research conducted during the 1930s and 1940s.

Carlos was quite taken with the architecture; he explained that construction of the buildings used extensive columns both inside and outside. It appeared from the slides that it was reminiscent of the architecture of the old, southern plantations.

The Warm Springs Hospital was laid out as a quad, with the buildings all facing one another in a large square. There were rehab areas spread throughout the center of the square where rehabilitation sessions would take place. He showed us an example of a large, cement square with stairs coming up from each side, all leading to a central platform; there were handrails for patients to hold onto to stabilize each step. This was used to teach patients how to use muscles more effectively as they came up or down stairs and/or to practice how to balance more successfully with those motions.

Carlos relayed some of the history of Eleanor Roosevelt's involvement with making the Warm Springs program successful. He also brought up the issue of segregation during that era and spoke of the fact that black polio survivors were not given access to the Warm Springs facility. In order to meet the polio needs of the black community, Eleanor was instrumental in establishing a separate center for African-American victims of polio at Tuskegee College.

It was fascinating to see the slides Carlos provided of the cement pools that stand as a tribute to the warm-water, therapy pools that were so famous of that location; he also had a wonderful pictorial history of the clothes changing areas and of the staging areas for entering and exiting the pools. Carlos felt an emotional tug of the history of that era surrounding him at every turn. He ran through a list of the buildings that still stand as historical monuments on the Warm Springs site: the Roosevelt family cottage where the president lived when he was visiting, the "Little White House" (which was his working office), FDR's secretary's house ( where Lucy Mercer lived), the chapel, the hospital proper, etc.

Carlos also discussed some of the many collections that remain for today's visitors to enjoy, like the entire display case of canes that have been received from survivors all around the world. And he chronicled FDR's love of driving on the grounds of Warm Springs. It was fascinating to see the historical photos, which explained the mechanics of how, with the help of hand controls, FDR was able to drive without the use of his legs.

As Carlos brought us into the present and more modern uses for the Roosevelt Institute at Warm Springs, Georgia, he added that today's use of the facility has been expanded to meet the needs of the ever-growing neuromuscular community as a whole. With polio on the fringes of eradication, there are fewer numbers of polio survivors applying for evaluation, yet other disorders like ALS add substantially to the overall impact and needs of the neuromuscular population.

Carlos closed with his recommendation of two books, FDRs Splendid Deception by Hugh Gregory Gallagher and POLIO: an American Story by David M. Oshinsky.


New Meeting Location and Date Changes

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In order to more efficiently fulfill our mission of providing current and informative information to the polio community we will be moving to a new more central location for our meetings that includes more professional surroundings with multimedia audio/visual equipment, and a convenient adjacent location to have more frequent luncheons and potlucks as integral part of the meetings.

We will be meeting on Saturdays, starting November 11 at Kaiser's main hospital on Zion Avenue. The address is: 4647 Zion Avenue San Diego, CA 92120

This first meeting we will be in Classroom 4 in the basement. Once you take the elevator down, the classrooms are across the hall from the cafeteria, so follow the signs to the cafeteria and you can't miss our room!

This should be a fun new adventure!

On Saturdays parking will be easily available and handicapped accessible restrooms are nearby. The hospital has also offered us a private portion of their cafeteria for luncheons where we could either bring our own food, or purchase food there.

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Clik Here if you need driving instructions to the new location. Please also see the "Meeting Location" Page of this Website.

Shawna Park's Presenation on the Disability Rights Legal Center

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Shawna Parks, Esq. at May 2006 Meeting

Those who missed this May's San Diego Polio Survivors meeting missed a wonderful presentation by an outstanding guest speaker. We were honored to have Shawna Parks, Director of the Civil Rights Litigation Project for the Disability Rights Legal Center (DRLC) based in Los Angeles at Loyola Law School, speak to our members about various facets the Americans with Disabilities Act (ADA). Ms. Parks prefaced her discussion by explaining the close working relationship shared by Loyola Law School and the crew of attorneys involved with the DRLC on their campus. She explained that it affords both sides a heightened sensitivity to ADA issues as they simultaneously teach and learn about the problems the handicapped community within the state of California experiences. Shawna explained that the goal of the school/legal center relationship is to educate the legal community about ADA issues from the very basic instructional level.

Ms. Parks told us that she was involved with litigation processes. She works primarily on high impact cases which often represent a large number of people. Her cases have the possibility of greatly impacting the disabled community in important ways. Coincidentally, and extremely appropriate to our post-polio our group, Shawna explained that she was involved a couple of years ago with a legal action to prevent the closure of the polio center at Rancho Los Amigos. Shawna detailed how she, along with involvement of Loyola Law School and three other supportive organizations, fought a class action suit to keep Rancho Los Amigos from closing its doors to the PPS community. As a result of their efforts, the court decided Rancho Los Amigos would stay open for three years longer, and during this period of time they would work on a plan keep the doors to Rancho open indefinitely.

Shawna noted other programs in which the Disability Rights Legal Center is involved with aside from her specific involvement with the Civil Rights Litigation Project. She discussed:

The Disability Medication Center which mediates such issues as landlord disputes, ADA accommodations issues, university mediations issues, and they offer a phone referral service.

There is a Cancer Legal Resources Center for issues related to trusts and other items which assist patients diagnosed with cancer better deal with their disease.

The Education Advocacy Project which does presentations to employers, schools or anyone who might like to learn more about ADA issues.

And finally they run a Community Outreach Program which has a lawyer referral service.

Ms. Parks explained that all of services they provide are free to clients. They usually assume cases that have great merit; and in the end, when they win such cases, the defendants in those cases are charged with paying the DRLC's legal fees.

Shawna's handouts followed a Powerpoint format; they were detailed and easy for our group to follow. She explained that ADA is the federal statute to protect the rights of people with disabilities. She used as her example the 504 Plans that ensure that children, or those who attend school with a physical or mental disability, have an education plan tailored to their needs.

Shawna then moved on to the California state statutes, like the Unruh Civil Rights act which is a broadly written state law that prohibits discrimination by business establishments. Within the state arena is also the Blind and Other Physically Disabled Person's act and the Unfair Competition Law (which was enacted for businesses that engage in unfair business practices), the Fair Employment and Housing Act (which protects those that are discriminated in employment and housing..

Shawna explained that we are fortunate that California laws protect our citizens so well. She even covered how you could conceivably be protected under ADA even if you have no disability. As an example she stated that you might be fired because an employer notices that you have taken time off in the past for an unavoidable injury, and he might discriminate against you for that period of time in the past over which you had no control. Or you might be regarded with a disability and could file a discrimination claim if you accompany a person with a disability who has been discriminated against, such as a friend that wheels a handicapped buddy or a parent who pushes the wheelchair of a child with a disability.

Shawna discussed the different Title programs:
v Title I - covers employment (employers over 15 people) and reasonable accommodations.
v Title II - covers public entities/state and local governments. (but not the federal government)
v Title III is public accommodations as the law applies to businesses.
v Title IV is a miscellaneous provision that covers public communication, telecommunications for the Deaf and Hard of Hearing.

In closing Ms. Parks spoke ever so briefly about the Zoo lawsuit that is being brought forward by a class of mobility challenged people who visit the San Diego Zoo/Wild Animal Park on motorized scooters and power wheelchairs. She discussed ADA issues as they apply to non-discrimination policies.

Florence Ledsam Shares Letter on Exercise from Dr. Perry

One of our members, Florence Ledsam, shared a 1991 letter from Dr. Jacquelin Perry, a renowed expert on PPS, regarding exercise with the members of our support group during our March 2006 meeting. The members asked that we post the actual letter on the website so everyone could benefit from Dr. Perry's opinion on this ever present question.

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Frustrated with your Doctor - A group Discusssion

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Dr. Bill Greer

The La Jolla March 9th meeting was very productive and informative. The topic for this month was frustration with our Doctors and to assess how our insurance service providers were meeting our needs. Basically, in a roundtable format, we discussed: What our experiences were. How did those interactions make us feel? What did we do to get the attention of our Doctors and providers to meet our specific needs? What was the outcome of those requests? How would we change our approach if we had the same situation occur again? And what information would we recommend to others faced with the same situation?

The guest co-moderator along with Rick K. was Dr. William Grier (psychiatrist/retired), and he did a great job of keeping a positive spin on topics. He is very charismatic, and you can tell that people love him instantly and share willingly with him. He last visited a La Jolla meeting a couple of years back. He was very exasperated at the time about how to approach helping himself, and from the story he relates now, at the time he was in a great deal of PPS pain and on medication to deal with it. With the help of a polio knowledgeable physical therapist, he got his life back in perspective, is free of heavy pain medication, and he looks wonderful. I hope he attends meetings much more often in the future.
Gladys Swensrud



Bi-Annual Fund Raising Appeal for PPSManager

Before I begin this appeal it's important for all PPSManager readers to know that although my name is Rick I'm not the same Rick that works so tirelessly authoring, editing, and publishing our newsletter, the PPSManager. I am Rick Kneeshaw the volunteer Facilitator for the San Diego Polio Survivors, La Jolla group, sometimes known as the "other Rick" or "Rick down south."

Regardless of what I'm called I offered to assist in coordinating a fund raising appeal to support the continued publishing of the newsletter. The very fact that you are reading these words indicates that you receive and benefit from our newsletter. As most of you know the PPSManager is mailed free to over 600 polio survivors in southern California bi-monthly to keep them informed on a host of polio and post polio syndrome (PPS) related topics. I'm sure most of you would agree that dealing with PPS is much easier when you know that you're not dealing with it alone. We all benefit from learning how others with PPS handle the symptoms, problems, and solutions that the PPSManger elucidates in each issue. Articles are submitted to the newsletter from local polio survivors and from national polio newsletters and sources, all of which are selected and tirelessly edited by Rick Van Der Linden, to provide us with essential information related to polio, all in one free newsletter.

Like most publishing efforts there is a cost associated with the newsletter although everyone receives it for free. As in the past we rely on the generous contributions of newsletter readers and other donors to fund the costs of the newsletter. All the funds received go the cover printing and publishing expenses. No one who works on, or submits articles for the newsletter receives any payments. A complete financial report for the PPSManager can be seen on the Newsletter page of this website.

If you enjoy and benefit from our newsletter, and are able to contribute, I'm asking you, on behalf of all polio survivors in southern California, to support the newsletter financially. Contribute what you can to the address below and don't forget to show the newsletter to your doctor, medical equipment supplier, church, or rich uncle if you have one. Many of our larger donors have historically been from organizations and individuals that interface with, or have knowledge of, the post polio community.

Send what you can to:

Rick Van Der Linden
34711 Lyn Avenue
Hemet, CA 92545

Don't forget to let us inform us if you know someone who would like to receive the newsletter. They will be added to our confidential mailing list regardless of whether they can contribute or not.

If you have any questions about our bi-annual appeal, or would like us to attend your survivors group meeting to provide additional information please contact me at: polio@mindspring.com.

Thanks for your support,

"Rick down south"

What to Do with Your Old Braces

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If you have ever wondered what to do with your old braces here is a suggestion. Valley Orthopaedic Clinic in Calexico, California, just a few miles from Mexico, will receive and distribute used braces to patients on both sides of the border who have no other way to get a brace they need.

The Clinic will repair the braces as required for each patient, or use parts from the braces to fix other broken braces. If you would like to help out you may send your old braces to either of the following:

Valley Orthopaedic Clinic
352 East First Street.
P.O. Box 1645
Calexico, California 92231
Progressive Orthopedics
4224 Ohio Street
San Diego, Calif. 92104
619-280-9174
www.progressiveortho.com

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