AMPUTEE SUPPORT GROUP OF

NORTHERN VIRGINIA NEWSLETTER

 

Support Group Meeting

 

The Amputee Support Group of Northern Virginia (ASGNVA) met at its regularly scheduled meeting on August 2, 2005, from 7:30 to 9:00 p.m., at the Telestar Court Building in Falls Church, Virginia. Patti Skinner led the meeting in the absence of Beth Harris who couldn’t attend the meeting due to some medical problems.
            Unfortunately Area Access didn’t come and give their presentation so Patti had to “wing it” for the meeting. This might have been a blessing in disguise, however, as we had quite a few new amputees (although not many experienced amputees to mentor them). 
            And, of course, Jason from Nascott Rehabilitation attended the meeting. He answered questions for quite a while until long-time member, George Willis, arrived. Thank you, George, for taking the time to attend the meeting and caring to give us the benefit of your expertise as an experienced amputee.
            Eventually Patti noticed someone who’d been sitting there for quite a while who didn’t look like an amputee and Patti asked him if he was from Area Access. It turned out that he was Joseph Smith, CPO, Director of Prosthetics, Infinite Technologies. Yes--a professional attending the meeting! Not only that, but Infinite Technologies is the vendor for Inova Fairfax Hospital, our sponsor. 
            Another member named George attended the meeting, with his wife, Karen, for the first time although he’s been an amputee since 2003. George is our one-and-only left hip-disarticulation and showed up in a cool, agile, blue 3-wheel scooter. He has been working with a prosthetic house but the staff member that he was working with left the organization. Now, because George is a specialized case, they don’t have another staff person to train him. Consequently, he’s shopping for another prosthetist who CAN work with him and has some experience with his type of amputation. Amazingly, George has an indomitable spirit and isn’t letting this get him down. He’s reading up on all the new studies and waiting for technology to catch up to him! George, send me an e-mail with those new studies so I can put them in the newsletter and get your e-mail address!
            Jean, a new amputee of two months, attended the meeting for the first time with her daughter, Kathy. She is a right below-knee amputee and has been working with Prosthetic Solutions. She was interested in information in retrofitting her car for hand controls. Welcome, Jean. You will be added to the database and will begin receiving newsletters immediately. Also, you will be sent a New Amputee Information Packet including information on retrofitting your vehicle for hand controls and various local vendors. 
            Another amputee that we’ve had in the database for quite a long time but have not had the opportunity to meet yet also attended the meeting. Elizabeth S. and her daughter, Shirley, finally came to their first amputee support group meeting. Elizabeth has been a right below-knee amputee since September of 2004 but has not been able to attend a meeting until now. Welcome Elizabeth and Shirley. I hope you’ve been enjoying the newsletter. Patti mentioned that you might need a New Amputee Information Packet; I sent you a packet in October 2004. Do you need another one? Please let me know.
            Back to Joseph Smith, CPO, Director of Prosthetics, Infinite Technologies. He distributed his business card to everyone and then really began to answer questions – especially fit questions that Jean had. Since she is so new to the process (only 2 months), he explained the give-and-take between the patient (amputee) and the prosthetist and how to determine, if she is having pain (which she is), how to determine if it’s the wrong type of pain (yes), and that she should bring it up to her prosthetist.
            Joe also spoke with George about what options are out there for hip disarticulations. George says he basically watches what goes on at Walter Reed for all the new technology.
            Finally, the subject turned to everyone's favorite restaurant or shop and how easy or difficult it was to get into or out of certain places including bathrooms. I suspect this was in response to the Wired on Wheels article in last month’s newsletter so I’m repeating the link here for you (www.wiredonwheels.com).  Patti was reminded that she’s going to the NMAI Powwow at MCI center and there is a link for accessibility that she wanted to share in the newsletter as well: http://www.disabilityguide.org/.
            Hopefully I’ll be able to attend the meeting myself next month. Patti is doing an excellent job – even when I call her at the last moment. Please remember to thank her for pitching in and keeping our support group alive and kicking.
            I’ve already called Area Access and Barbara said that they are re-aligning their sales force and that might have been the problem but she will be more than happy to give us a “show and tell” for next month so we’ll try again. I’ve worked with Barbara before and don’t think she’ll forget us. I’m still trying to get the Hoveround people to come out and give us a demonstration but they aren’t set up to give demos to a group (just individuals) so they’re being a little dense but I’ll get them to figure it out sooner or later – hopefully for the November meeting!
            See you then!  Until the next meeting – stay cool, happy and healthy.

 

News and Announcements
ASGNVA Funds and Donations – There have been some donations to ASGNVA Fund 352 over the summer. This is ASGNVA’s fund to publish/mail our newsletter and New Amputee Information Packets.  Also, Mary Olivari sent me two books of stamps to help curtail postage expenses. Thank you to our generous donators who feel the work of ASGNVA is important:

 

 

ASGNVA does not charge any dues.  If you can, please make a donation today.
To obtain a donation form, call 703-289-2072.
To donate by check or money order, Payable to Inova Foundation Fund 352, Inova Health System Foundation, 8110 Gatehouse Road, Falls Church, VA 22042. 
To donate by credit card, https://connect.inova.com/j/inovanet.srt/forms/donation/donatenow.htm.
Remember to indicate Inova Foundation Fund 352.

ASGNVA Newsletter Database Update –  I’ve received about a dozen replies from members updating their personal information with ASGNVA. This is important so that we don’t waste money sending and re-sending newsletters to incorrect addresses, etc. Please do this; I’m sure everyone is getting tired of seeing this in the newsletter and it takes up a lot of room. Professionals and associate members – this includes you too.

·         Name and Street Address, City, State, Zip.
·         Phone (home, work, fax, cell, whatever you have).
·         E-mail address (if applicable).
·         If you have a spouse or “significant other”, their name

Additionally, to help target subject matter and for statistical purposes, please include the following:

·         Your association to ASGNVA (amputee, family member, friend, or type of professional).
·         Your birth date
If you are an amputee:

F     What type of amputation (right above knee, or RAK, LBK, etc.).
F     The year(s) of your amputation.
F     The cause of your amputation.
F     If you use a prosthesis or not.
F     If you use a prosthesis, who your prosthetist is

Contact Beth Harris, 6316 Sumerduck Rd, Remington, VA 22734-2308, 540-439-3656, asgnva@earthlink.net or betheharris@earthlink.net. Thank you for your cooperation. 

Medical Coverage for Residents of Fairfax County - The Fairfax County Office of Partnerships, in collaboration with government, medical and business communities, offers low-cost medical care for children and adults through Medical Care for Children and Adult Health partnerships. If you are a Fairfax County resident with limited income and no health insurance, you may qualify for assistance. Services, including medical and dental exams, prescription medications, specialty care (limited) and laboratory, are provided by community physicians and Kaiser. Call Northern Virginia Family Services at 703-385-3267, TTY 711, or the Office of Partnerships at 703-324-5171, TTY 711, for more information or to see if you qualify.

Fairfax Area Disability Services Board Needs Your Help - The Fairfax Area Disability Services Board conducts a survey every three years to develop ways to assist residents with physical and/or sensory disabilities. This survey leads to a report, which will determine what areas need funding and resources to improve the independence of people who have physical and sensory disabilities in Fairfax County and the cities of Fairfax and Falls Church. The board needs your opinions. Call (703) 324-5421 to get a copy of the survey or take the survey online at www.fairfaxcounty.gov/dsb/survey.

 

 

Virginia’s Assistive Technology Loan Fund Authority (ATLFA):  Loan Information - Home improvement loans are made to facilitate independence related to a specific disability (ramps, roll-in showers, environmental controls). Many relatively small home improvement loans are unsecured; for more substantial modifications, these loans are typically secured with a second deed of trust. SunTrust will lend up to 100% of the value of your home on equity loans for qualified applicants. Financing on equity loans is up to 240 months.

          Automobile loans are made to enable a person with a disability to purchase a van or car, and to make necessary modifications.  These loans are made for vehicles that are modified to accommodate a specific disability (wheelchair lifts, hand controls, etc.), and are secured by the vehicle. Financing for up to 100% of the vehicle may be available. Used vehicles, no more than three years old, may be financed for up to 72 months while older vehicles can be financed for up to 60 months.  Loans for new vehicles may be made for up to 72 months, or up to 78 months for an additional 1/2% interest rate.

          Unsecured Loans. SunTrust Bank will provide financing for equipment such as wheelchairs, electronic scooters, computers with voice input and output, hearing aids, low vision aids, communication devices and other equipment (including prostheses). These loans are generally unsecured. Financing on unsecured loans is available for up to 48 months on loans under $5,000 and for up to 60 months for loans over $5,000.

          Direct Loans. ATLFA makes loans directly to qualified applicants for loans up to $4,000. There is no lower limit for direct loans.

          For loan approval, applicants will meet Sun Trust's normal underwriting standards, with a modest increase in their debt to income ratio.

Lack of Wheelchair Taxis in Northern Virginia (by Patti Skinner) –  Last year, there were many Red Top and Yellow Top wheelchair accessible taxis on the road. Then, during December-March, it was my experience that there was a problem around 2:00 p.m.  Many of them stopped working, went off shift or went out of service, which made it more difficult to acquire a wheelchair accessible taxi during those times.  Additionally, during Ramadan the problem increased, because Muslim drivers don't work after sundown. 
            A few months ago, I heard that two drivers were given suspension, and then I was told that, because of changes with the taxi commission and internal changes within Red/Yellow Top (they're essentially the same company), there was more incentive for drivers to drive regular taxis.  From what I understand, there's a row of unused wheelchair accessible taxis just sitting there on the lot day after day. I also don't know what the internal financial arrangements are at Red Top.
            The obvious plus points for driving a non-wheelchair accessible taxi for the drivers are: 
·         It takes less time to pick-up and discharge a non-wheelchair fare, therefore they can complete more regular fares (and make more money) during the same time period;
·         It puts less stress on the driver’s bodies because they don't have to strap people in; and,
·         They don't have to deal with lesser abled clients, etc. 
            In a nutshell, drivers get paid more in the current scheme to drive regular taxis.  But that isn’t serving the disabled population of Fairfax County, and we're suffering because of these actions.
            When I originally spoke to Red/Yellow Top drivers, they told me I should talk to the Fairfax County Taxi Commission about the lack of wheelchair accessible taxis on the road.  When I phoned Fairfax County, they said the Taxi Commission was really for people wanting a license to operate a taxi and they referred me to Consumer Affairs.
            I then called Fairfax County Consumer Affairs and they said I should file a complaint, which I did.  I encourage everyone else that lives in Fairfax County to do so as well.  You can file the complaint online at:
https://www.fairfaxcounty.gov/consumer/IQext/CSW_acs.asp.  The complaint form is titled “Tenant/Landlord” but it’s a multi-use complaint form – use it anyway.  Or, if you don't have Internet access, you can file a complaint with the Fairfax County Consumer Affairs office by phone at (703) 324-8484.
            I really encourage everyone to file a complaint.  The more complaints that are filed, the more the county will look at and understand our situation, and, hopefully, more wheelchair accessible taxis will be returned to the road to serve the disabled community’s needs. 

ASGNVA Web Pages – INOVA Fairfax Hospital’s official ASGNVA web page:

www.inova.org/inovapublic.srt/rehabilitation/amputee_support.htm.

The ASGNVA UNOFFICIAL WEB PAGE: 

home.earthlink.net/~asgnva/ASGNVA.html.

Newsletters and other information will continue to be added to the unofficial web page, as applicable. Contact Beth Harris, 540-439-3656 or asgnva@earthlink.net, if you want anything added to the page, find something missing or wrong, etc. 

ASGNVA Lending Library – Come to a meeting and borrow a book or get the new handouts. To borrow materials from ASGNVA’s Lending Library, please contact Jason Bulger at 301-680-2159, or Beth Harris at 540-439-3656 or e-mail asgnva@earthlink.net.

Doug Sloan – You can’t keep a good guy down. Doug is back to painting and doing everything he wants to do (and he’s probably not supposed to do yet).  Maybe he’ll come show off his new scars at September’s meeting.

Hugh Elliot – Hugh will be unable to attend the next meeting.  He was unable to make the August meeting since he was in Sweden serving as a Judge at the Mirror Dinghy World Championship.  Then, in September, it’s off to Denmark to judge the Paralympic Sailing Classes World Championship.  Our world traveler sportsman will return in October to revel us with his stories of overseas travel.
Debbie Pearce – Debbie Pearce is one of my PALS pals.  She missed the July meeting because she was at Sunset Beach in NC.  But she remembered to report that the xerosox for beach/pool wear worked great (keep on advocating, Debbie!).  She became an amputee because of cancer and has been having her ups and downs with the disease ever since.  Debbie has expressed a clear attitude of health and well being during this entire process and is determined to win this battle with that sneaky cancer.

          She finally got a clear CAT scan (cancer cells are there but not forming a mass yet) and her wound area is finally healing (YES!).  She will begin oral chemotherapy when she returns from her cruise in August (keep her in your thoughts).

          As usual, everything affects your prosthesis so now she’s also working on that to make it better.  Edema has made her "good" prosthesis not workable so she’s wearing her old test socket.  Not exactly the ideal situation – I hope she can get that resolved prior to going on the cruise.

          Chin up, as always, Debbie, and we’re looking forward to seeing you in September.  I’ll give you first chance at riding on the Hoveround or whatever …

Scheduled Events

World Of Possibilities Disabilities Expo And Senior Expo 2005 - November 4-5, 2005, Landmark Mall, Alexandria, Virginia, Friday, November 4, 2005, 10am-9:30pm, and Saturday, November 5, 2005, 10 a.m. to 9:30 p.m.  New this year, a large Senior Expo will be held in conjunction with the Disabilities Expo in Alexandria, VA. These premier consumer expositions, which are free to the public, are dedicated to improving the lives of children, adults, seniors, their families and caregivers, as well as health care and education professionals. World Of Possibilities will allow an opportunity for an anticipated 3-6,000 attendees to explore a vast array of products and services all conveniently displayed to see, touch, and compare in a "one-stop shopping" experience. This will give individuals who do not typically have easy access to comparison shopping, a hands-on opportunity to try devices and speak directly to equipment representatives about products and services. World Of Possibilities will also offer informative workshops, demonstrations, and representatives from local and statewide agencies and organizations to assist the community in gaining more information about supports, services and resources that they may need now or in the future.

ASGNVA Monthly Meeting – The next monthly meeting is September 6.  I have been trying to confirm a “Show and Tell” demonstration from HoverRound Corporation (you’ve seen the commercials on TV) but so far that has not transpired.  I did talk to Barbara Spelman at Area Access and she promised to give us a presentation at the September meeting.  A presentation is always fun and informative so please plan to attend the meeting.   

          Do you have a subject or topic you would like to see covered? If so, please contact Beth Harris at 540-439-3656 ASAP. Any and all suggestions are appreciated.

Calendar of Events for 2005

 

Primer on Pain -- Introduction

Pain is a near-universal human experience. In some cases, it provides a valuable learning experience, without lasting effect, regarding what actions to avoid or adapt in order to prevent pain from re-occurring. In other cases, pain can significantly interfere with the ability to function in daily life on many levels. Pain can be short-term (acute) or long-term (chronic) in duration.

          There are two basic types of pain. Nociceptive pain results from direct mechanical, thermal, or chemical trauma and if mechanical in nature, may manifest itself as musculoskeletal pain. Neuropathic pain results from damage to the peripheral or central nervous system tissue or from abnormal processing of pain in the central nervous system.

          Pain is more than a simple annoyance; it can lead to serious physical and psychological consequences across almost every bodily system. Further, if acute pain continues without adequate relief, it can become neuropathic pain, in which the normal pain pathways become altered, making it much more difficult to treat.

          It is widely hypothesized that people with disabilities experience more pain with greater severity than the non-disabled population; however, data supporting this hypothesis have not yet been systematically examined or summarized.

          Pain is also a multidimensional experience, with each dimension influenced by an individual's culture and upbringing. The four dimensions of pain are affective (emotional responses to pain), behavioral (actions taken when pain occurs), cognitive (attitudes and beliefs about pain), and physiological-sensory (the body's internal response to pain).

          Emphasis is often placed on the physiological-sensory dimension with pharmacology (medications) being the first line of defense. While medications can provide pain relief, especially for musculoskeletal pain, it is often introduced when pain has already reached a high enough intensity to seek treatment. It stands to reason that preventing pain, or at least managing it when the intensity is still modest, might be a more beneficial approach. Surgery can be an option to relieve pain in some disabilities, but is generally used after other, less-invasive options have been exhausted.

          Some people take herbal medications to help relieve pain, based on the assumption that herbal medicines are natural and therefore safe. The truth is that many herbal medications have been associated with numerous adverse effects. This is not surprising considering that medicinal herbs contain pharmacologically active ingredients. Herbal medications are largely unregulated in most countries, which can result in serious safety and quality issues. In addition, herbal medicines taken in conjunction with other medications may cause unexpected herb-drug interactions. As a pre-caution, it is important to consult with your physician before starting any new treatment, herbal or otherwise.

          To manage pain most effectively, all four dimensions of pain must be addressed. Each dimension can have a dramatic impact on how pain is experienced. As a result, a multi-modal, multi-disciplinary approach is required. Treatments may need to be introduced initially on a trial-and-error basis. Since pain can be caused by a number of different mechanisms, it may require some experimentation until a treatment or combination of treatments is found to be most effective for each individual.

          In addition to medications, there are effective non-pharmacological strategies to reduce pain. Education of both the person experiencing pain and their caregivers has been cited in numerous studies as a way to reduce pain by increasing understanding, identifying positive coping strategies, and improving attitudes and self-efficacy. Education initiatives among people with disabilities have been associated with considerably lower disability scores and decreased pain scores, in many cases to the same degree as a non-steroidal anti-inflammatory drug (NSAID). Education about the condition itself and the variety of treatment options available allows the individual to be an active partner in decision-making that can improve self-efficacy. Fitness professionals need to become educated about the impact of exercise on people with various disabilities in order to avoid harm and increase function without increasing pain.

          Social support has also been identified as a common factor across disabilities to help reduce pain. An individual's support system includes friends, family members, and caregivers, including professionals. Being around people who have a positive attitude, offer support, and are optimistic can reduce the amount of pain medication needed by an individual.

          Exercise is another potential non-pharmacological approach to pain management. In a few cases, certain types of exercise may increase pain. It is important to know which activities increase pain in people with a given disability so the activities can be avoided or modified in order to keep a person physically active so he or she can garner the benefits of exercise. In other cases, exercise may not reduce pain, but can be done without increasing pain. This provides assurance to people whose fear of pain prevents them from trying exercise at all. In yet other cases, especially for musculoskeletal pain, exercise can alleviate pain and be a primary factor in increasing function.

          Exercise compliance is a key factor in long-term pain management in people with disabilities. As compliance declines, pain may increase. Compliance may be increased in people with disabilities through the following tactics:

• Set flexible goals that can change as pain or disease state changes.
• Cultivate positive coping skills in clients with disabilities.
• Utilize pacing (breaking down tasks into shorter manageable segments rather than one longer one).
• Provide encouragement and support.
• Maximize self-efficacy by involving client in decisions about the exercise program, linking exercise with specific benefits and providing specific instruction on how to perform or adapt recommended exercises.
• Provide close supervision to home-based exercise recommendations or supplement home-based exercise with group classes.

          If exercise is to be a strong component of community care for people with disabilities, it is necessary to have access to community-based exercise programs that are sensitive to their needs. Lack of individualization is one reason why many people with disabilities are unsuccessful in attending exercise classes at local health clubs. Specific training for community instructors regarding exercise intensity and progression may be needed. One study demonstrated that personal trainers with no previous experience with people with fibromyalgia were successful in adapting their exercise programs after a brief period of education and training.

          Exercise benefits abound, but not all relate to pain management or reduction. The exercise recommendations contained in this report are limited to their impact on pain management and should not be taken as a holistic recommendation. Increasing aerobic capacity, strength, mobility, and ability to perform activities of daily living are important benefits not highlighted in this review. New data becomes available every day and there are studies that may not have been identified that could provide additional information.

Shopping Safely from Home - Better Business Bureaus and consumer organizations are working to educate consumers on how to safely shop from home. Shopping from home offers choice and convenience, but consumers should know the rules and use safety tools to protect themselves from fraudulent offers and unsafe products. Shopping from home options include online/e-commerce, telephone orders, mail orders, door-to-door sales-even yard sales/flea markets. The Better Business Bureau offers the following tips when shopping from home:

Know whom you're dealing with. Find out where the seller is located. Do not deal with companies whose literature or web site only list a PO Box or have no phone number. Check out the company's reputation. Contact your Better Business Bureau for a reliability report.

Protect your privacy. Reputable businesses will not ask you to supply personal information, such as your Social Security number or personal bank account information, to conduct a transaction. Provide personal information only if you know who's collecting it, why, and how it will be used.

Pay the safest way. Know the different options for payments and use the one that offers the best protection. If you pay by credit card, the Fair Credit Billing Act protects you.

Know what you're buying. Get a complete description and all terms (including refund or return policy) of the transaction in writing. If you are buying a used item, check to make sure that it meets safety standards.

Think it through. Don't act on impulse or let anyone pressure you into agreeing to a "good today only" deal.

Know your rights. The Mail or Telephone Order Merchandise Rule covers merchandise you order by mail, telephone, computer and fax machine, and requires companies to have a reasonable basis for claiming they can ship an order within a certain period of time.

Know who to complain to. The Better Business Bureau, government agencies, industry organizations and other groups can help you if you have a problem. Visit the BBB central web site (www.bbb.org) or call your local BBB for additional information.

SHARE YOUR KNOWLEDGE AND AMPUTEE EXPERTISE!

COME TO A SUPPORT GROUP MEETING!

 

 

7:30-9:00 p.m., SEPTEMBER 6 MEETING

DEMONSTRATION BY AREA ACCESS (REALLY)!

 

 

Contact Beth Harris, 540-439-3656, BeTheHarris@earthlink.net,

or ASGNVA@earthlink.net

 

Amputee Support Group of No. VA

c/o Beth Harris

6316 Sumerduck Road

Remington, VA 22734-2308

                                                                                                   

 

 

 

 

 

 

 

 

 

 

 

 

Where do we go from here?

NEXT MEETING IS SEPTEMBER 6!

 

PUT THE DATE ON YOUR CALENDAR NOW! 

ASGNVA NEEDS YOUR ATTENDANCE AND EXPERTISE NOW!