WHAT HELPS YOU MANAGE YOUR PAIN?
This section is for Links that can help CRPS patients, and perhaps other Chronic Pain Patients, better cope with their pain. Maybe it has to with Meditation, Yoga, Reading, Walking, Painting, Sculpting, whatever you patients and loved ones feel helps YOU cope with your pain.
Send us your links if you have a site you have developed for this purpose, a blog you do daily for it, one you visit regularly that helps, etc., and we will check it out and if we agree, up it goes! AIRFARE PROGRAMS – FREE OR HELP WITH FARES PROGRAMS FOR THE DISABLED ????
YES, ABSOLUTELY! Here are some below that I have either used, confirmed, or had friends who have used. At the time of this writing the information was current but these programs change all the time. If you become aware of any changes in names, numbers, etc. to the programs listed below please let me know so we can update the information. After talking with many patients, that SouthWest seems to be the easiest program to use and the Airline that offers more patients the best deal. They are very helpful and always seem willing to go the extra mile to aid patietns in need. I would suggest trying them first. Also it is important to note that many of these programs begin in January and have a set budget so quite a few may be out of money come October or November so once you know you have a need, get your request in early!
American Airlines Frequent Traveler Special Program
Attention: Miles for Kids
M.D. 1394
P. O. 619616
Dallas Fort Worth Airport, TX 75261-9616
1-800-433-7300
Debbie Ryan Fax: 817-931-6890
Operation Lift Off TWA
Contact persons: Liz Martin, Brian Zahorik
Phone: 314-895-5563, Fax: 314-895-5550
Skywish Delta Airlines
Contact person: Ruth Ann Robinson
Phone: 703-836-7112, ext 285
This is run by United Way of America.
Southwest Charitable Ticket / Southwest Airlines
Contact person: Debbie Wafford at 214-792-7943 For information, this line will explain how to get the forms. Once you fill out the form, send it in, one from you and one from your Doctor. They review the forms, then make their decision and contact you. If they approve they will send the patient one free round-trip ticket and sometimes will send vouchers towards the loved ones ticket if that person is needed at the treatment. Need to do this WAY in advance because it is a busy program.
AirLifeLine – is funded in part by Ronald McDonald’s House of Charities. This is an organization of experienced pilots that provide free round trip air transport for needy adults and children who require care and are able to travel.
Phone: 1-800-446-1231 Small 4-seater aircraft with limited range of approximately six hours flying time. Very helpful.
National Patient Air Transport Helpline
The NATIONAL PATIENT TRAVEL HELPLINE provides information about all forms of charitable, long-distance medical air transportation and provides referrals to all appropriate sources of help available in the national charitable medical air transportation network. Provides information and referrals for those who must find a way to travel considerable distances for specialized evaluation, diagnosis, treatment, rehabilitation, and/or recovery necessitated by illness or accident. PatientTravel.org is a continuation of the original National Patient Air Travel HELPLINE (NPATH) site which has been serving patients since 1998. This site now receives more than 4,000 visits per month. The availability of charitable, long-distance medical air transportation in the U.S. is growing rapidly. More than 41,500 patients and their escorts will be served during calendar year 2005. This web site is a service of the National Patient Travel Center – the facility housing all the programs of Mercy Medical Airlift – a national charity. The Center is in Virginia Beach, Virginia and provides a variety of services to those seeking a way to travel long-distances for specialized medical evaluation, diagnosis and treatment.
The National Patient Travel HELPLINE can be reached on 1-800-296-1217. It is available 24 hours a day, seven days a week. Information on this web site can also help you understand the availability of resources that help patients in time of transportation need. Thank you for allowing us to be of service.
Phone: 1-800-296-1217
http://www.patienttravel.org/
Mercy Medical Airlift and Children’s Transport for life (see connection above)
Phone: 1-888 675 1405
Jean was who I dealt with. Fantastic organization! They take basic information from you including fax number for your Doctor, details on your flight needs. They fax a form to your Dr for basic diagnosis and “fitness to fly”. Then call you back once they receive the ok to fly and arrange the details on the flight. Even arranged flights for loved one with no problem. Highest marks!
http://www.mercymedical.org/
Angel Flight
Angel Flight® America (AFA) provides access for people in need seeking free air transportation to specialized health care facilities or distant destinations due to family, community or national crisis. Will provide free air transportation up to 1,500 air miles for those who are in need of medical treatment.
Santa Monica, CA
http://www.angelflightamerica.org/
Email: info@angelflight.org
877-621-7177
Children’s Flight of Hope, Inc.
130 Edinburgh South Drive, Suite 203, Cary, NC 27511
Non-profit organization that will provide free air transportation to and from a medical facility for treatment to children with critical medical needs.
Cary, NC
http://www.childrensflightofhope.org/
Email: info@childrensflightofhope.org
phone: (919) 466-8593
fax: (919) 460-8160
U.S. Department of Transportation Air Travel Hotline
Toll Free Hotline for air travelers with disabilities. Air travelers who want information about the rights of persons with disabilities in air travel or who experience disability-related air travel service problems may call the Hotline to obtain assistance at 1-800-778-4838 (voice) or 1-800-455-9880 (TTY).
American RSDHope – One of the two National CRPS Organizations dedicated to Complex Regional Pain Syndrome. The American RSDHope Organization was dedicated to increasing awareness of Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy (RSD), among affected individuals, their family members, health professionals, and the general public.
It was established in 1995 by a family whose son has dealt with the disease since 1974.
American RSDHope is one of the United States’ go-to organizations for information and help regarding Complex Regional Pain Syndrome for patients, families, the medical community, the media, and the general public.
——————————–APP FOR CRPS PATIENTS – TRACK YOUR PAIN AND OTHER SYMPTOMS ON YOUR I-PHONE AND THEN SHARE WITH YOUR PHYSICIAN!
TRACK IT BETTER. TREAT IT BETTER.
Now you can distinctly track, map, and monitor up to 12 different types of pain on your mobile device.
PAIN IS LIFE-CHANGING
When you or a loved one is suffering with pain, all you want is to get back to living again. Tracking your pain is the first step to treating your pain. When your healthcare providers can see how your
pain changes over time, trends can emerge that would otherwise go unnoticed. UPDATES OFTEN Doctor Harbut updates this app quite often, fine-tuning it, offering improvements each time!
MORE INFORMATION? WHERE TO BUY?
There are several places to read more about this exciting new App for I-Phone and I-Pad; (Android versions coming soon). I have it and really like it. It enables me to track 12 different types of my CRPS pain, describe in detail where on my body they occur by virtue of a diagram for each pain, and then it also comes with an overlay at the end for all 12 types. I can then share this with my Pain Management Doc when I see him at each appointment. He can see how it changes week to week, or how various weather, stress, situations affects my pain. Love the app! – Keith Orsini, Director, American RSDHope
I-TUNES – Head right to I-Tunes to learn more about, see all the diagrams, learn how it works, and buy it now on sale for only $2.99!
APP SHOPPER – Check out the App Shopper to read all the details
NANOLUME WEBSITE – Or just go to the Nanolume website and check it out there
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***Definitive Link Library For RSD/CRPS & Chronic Pain! – This is the website of Howard Black. He has put together an amazing collection of links, latest articles, organizations, NEWSLETTERS each month, and much much more that you have to check out. All the latest information. Fantastic website folks!
The actual name of the website is the Definitive LINK Library for CRPS/RSD & CHRONIC PAIN but I took out the LINK in the name because I think that is misleading. I think it takes away from what the site is. While it is true it is a collection of links to a ton of information, it is really much more of a LIBRARY. Think of going to your local library and needing a book. Well, this is a library for chronic pain patients. There is even a SEARCH box so you can find exactly what you are looking for.
WHAT IS THERE? – It would take ten paragraphs explaining everything he has included on his website; suffice to say if you want to know the latest information on CRPS, RSD, and/or Chronic Pain, or if you need a link for any of these things and don’t want to waste your time strolling through Google, Yahoo, Bing, or any of the other search engines just go straight There. Howard even puts out a Monthly Newsletter via email or you can see it on the website now! Want to know what is happening legislatively? He’s got it there. The latest in Clinical Trials, Drug Treatments, CRPS/RSD Support Groups and Blogs, it is all right there.
Medical Journals, Pharmaceutical Assistance, the list goes on and on.
This disease is difficult enough without trying to go it alone. So drop in, check some of the info out, especially some of the blogs and support group pages, and tell Howard you dropped in from American RSDHope!
———————————————–College Resources For Disabled Students
Prospective college students with disabilities will find that many campuses are equipped with offices and services that address accessibility, accommodation, and assistive technology for a diverse range of needs.
This guide explains your legal rights as a student with disabilities ― both physical and learning disabilities ― and the campus resources that can provide you with assistive services and tools. Additionally, we list a number of sites, apps, and software resources designed to aid students with specific types of disabilities, be they physical impairments or learning disabilities.
———————————————CRPS Puzzles List – Doctor Hooshang Hooshmand’s CRPS/RSD Puzzles
If you have ANY questions regarding CRPS check out this list of CRPS “Puzzles” or articles written by Dr Hooshang Hooshmand many years ago. He was a brilliant, brilliant man who lived to help patients get out of pain. We had the pleasure of meeting him back when we first began our organization and he kindly offered to speak at our very first conference. Needless to say we had him back many times.
His information, deductions, and reasoning was way ahead of most of his peers and he took a lot of flack for it. As the years pass more and more of his peers and those who follow after seem to be coming around to his way of thinking. Funny how that works. If you have five minutes or three hours, check it out. You will go back again and again I am sure.
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Charity Programs that Help Pay Your Medicare Prescription Drug Plan CopaysMEDICARE RIGHTS CENTER
Some charities pay a portion or the cost of your Medicare prescription copays. What these charities pay will count
towards the $4,550 in out-of-pocket costs you must spend (not including premiums) before you get catastrophic coverage
in 2010. However, for it to count, you must fill the prescription at a pharmacy in your drug plan’s network and it must be
for a drug on your Medicare drug plan’s list of covered drugs (“formulary”). These programs are also available to peo-
ple who are not enrolled in a Medicare drug plan.
CLICK HERE FOR CHART SHOWING ORGANIZATIONS AND HOW THEY CAN HELP!
Disabled World – News, Articles, Information, websites, and much more regarding the World of the Disabled Individual from Australia and NZ, Canada, the United Kingdom, and the United States. Wonderful website that you definitely need to stop in and check out.
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Hospital and the ER, Blood Work, Surgery, Needle Draws
You can also read an article here about hospitals, ER’s, Surgery, getting Blood Work done, etc. written by Keith Orsini of American RSDHope called “CRPS (RSD) The ER, Hospitals, Needles and Surgery – Are There Precautions I Should Take? Having Blood Drawn, Precautions You Should Take When Needles Are Used For Any Reason”
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Handicapped / Disabled Can Volunteer! Fantastic website that explains all about volunteering, even includes some places that need volunteers right now!
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Where Can I Volunteer If I am Handicapped, or Disabled? – There are many volunteer opportunities to help those who are handicapped, but what if you’re handicapped and you want to be the one volunteering to help others and your community? No problem. There are countless volunteer opportunities out there with workers needed in a variety of areas. Having a disability does not have to keep you from taking advantage of one (or many) of these opportunities.
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Medicare Information – Need help deciphering Medicare? Figuring out which plan works best for you? Or even which plans are available in your area? What is covered under Part B or what drugs are covered under Part D? How to replace a missing Medicare card? This is the site to visit, right here on our website!
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Maddak.com – Ableware for people who need a little bit of assistance in life. They are a a leading manufacturer of home healthcare products for seniors, people with disabilities and people recovering from injuries and illnesses. Marketed under the Ableware® brand name, our products make daily living activities easier enabling you to remain active and independent. They have everything you need!
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PAIN IS A FOUR LETTER WORD – Keith Orsini’s CRPS Blog
This blog covers the experiences of a nearly Four Decade survivor of CRPS (Complex Regional Pain Syndrome). Keith first got CRPS in 1974. Keith Orsini is also one of the Directors and Founders of American RSDHope a national non-profit organization for CRPS information.
Keith started the blog in 2008 when he was undergoing Hyperbaric Oxygen Therapy (HBOT) as a way of sharing what the experience was like. He blogged most every day, explaining what it was like to experience Hyperbaric Oxygen Therapy firsthand; everything from what had to be done before he was approved for the treatment, to the different types of chambers used, to how long his dives were each day, what it felt like to “dive” (the actual treatment itself), how he felt after each dive, etc.
He blogged about most of the 30+ dives he experienced as well as how he felt in the weeks and months following the treatment. It is a very interesting read if you are considering the treatment.
To read the first entry in the blog scroll to the very bottom of the page , “The Journey Begins!”Since those first blog entries, Keith has added other information regarding the disease CRPS itself.
Unfortunately many of the posts from the June, 2010 to June, 2011 time period were lost in the transition (move from the old website to the new website). Sorry for the gap. But there are many, many other posts there to read before that time and since then up to and including now. He still blogs now as much as he can but most of his time spent on the computer is spent answering patients emails and keeping the website updated.
But there are questions and answers covered in the blog on many aspects of CRPS
; medications, treatments, blocks, what CRPS feels like, how it impacts families, and much more. You can scroll through the titles and just pick out and read the ones that interest you.
So be sure to Check Out Keith’s Blog – PAIN IS A FOUR LETTER WORD!
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PRESCRIPTION HELP – CHARITY PROGRAMS THAT HELP PAY FOR PRESCRIPTIONS
Here is a list of different charity programs that help you pay for your medications.
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RELIEF FUND FOR PATIENTS
Patient Advocate Foundation’s Co-Pay Relief Program (CPR) is pleased to announce the launch of a pain fund to serve patients suffering with chronic pain, beginning on February 1, 2009. As with the Program’s existing disease silos, breast, lung, kidney, colon, pancreatic, head and neck and/or prostate cancers, malignant brain tumor, lymphoma, multiple myeloma, myelodsyplastic syndrome, osteoporosis, sarcoma, diabetes, autoimmune disorders and chemo induced anemia and neutropenia, patients must financially and medically qualify to access co-payment assistance. Patients and providers can contact the Co-Pay Relief Program toll-free at 1-866-512-3861 to initiate a request for assistance. In addition CPR also offers providers the opportunity to enroll patients into the program through a secure web based application service. Interested patients and providers should visit the program’s website at www.copays.org to register.
Patients who contact CPR for assistance work directly with a call counselor throughout the application process to complete a pre-populated application for review and signature by the patient. The call counselor works with the patient as well as with the provider of care to obtain necessary medical, insurance and income verification in an expeditious manner. The ability to efficiently move patients through the application process to approval affords the patient the ability to utilize their healthcare coverage and obtain the therapy benefit in a timely manner for the management of their disease. Once deemed medically and financially eligible for assistance, funds can be provided directly to the insured patients’ medical and/or pharmaceutical providers. In special cases, patients may receive the funds directly. Additionally, since office practice managers and billing coordinators continually work with patients to interpret and confirm insurance coverage levels and co-payment amounts, they can be helpful in recognizing those patients most in need of financial assistance and refer them to our program.
For More Information:
PAF Co-Pay Relief Program Patient Advocate Foundation
RESOURCE GUIDE FOR PEOPLE IN PAIN – In the Face of Pain provides tools for people in pain. If you pop by, let them know you came from American RSDHope!
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TRANSLATION PROGRAM – Translate our website, or parts of it, from English into Spanish, or French, or German, or pretty much ANY language! For FREE! – How cool is that?? From GOOGLE of course! Simply enter the web address of the website you wish to translate, for instance www.RSDHope .org , then enter the language it is in currently (english for ours) and then the language you wish for it to be in. Instantly the whole website is translated.
You can also use their translation program to translate a few lines or a paragraph if that is all you need, for instance an email from a friend in another country by using
———————————————For books on CRPS you can visit Amazon.com , they have all sorts of books on there on the topic.
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