FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

The following article was presented at the Post-Polio Health International’s Ninth International Conference on Post-Polio Health and Ventilator-Assisted Living, June 2-4, 2005.

HOW SELF ASSESSMENT CAN HELP YOU

OBTAIN BETTER CARE FROM HEALTH PROFESSIONALS

Mary Kinane, BA, PGCE, Chair

Hilary Hallam, FIST, Founder, Secretary and Newsletter Editor

Denise Carlyle, BA, MA, PhD, LRAM, Treasurer

Lincolnshire Post-Polio Network, U.K.

The most reported problem to our Network, not only from the U.K., but from around the world, is that the assessment that has taken place did not find evidence of the symptoms / level of symptoms being reported.

Polio Survivors often spend months, sometimes years, putting off going to a doctor to find out why they are experiencing pain, fatigue and functional decline. To then be told that there is nothing or little wrong with them causes considerable stress. Each negative appointment causes frustration, anger, and more stress that makes our medical condition worse.

Again and again, through lack of knowledge about polio, they tell us that they had what must have been a mild case of polio because they recovered so well and managed so much in their lives. Regardless of level of recovery they are so proud of their achievements. Then comes the but … But, after a fall, an operation, an accident, a period of huge stress, something changed because from then on the harder they pushed the worse they got. Their lives are changing so much why are they having such a hard time getting medical help?

So why is this happening? We have highlighted eight possible reasons that we believe should be taken into consideration.

1. Not enough facts about Polio and its late effects are being taught in Medical Schools.

2. Interpretation of facts in medical articles.

3. Diagnoses were made using test results, physical examination and clinical observation of the weakest part of the body.

4. The extent of recovery from Polio is often not realised.

5. There are no tests for PPS. It is a diagnosis of exclusion.

6. The way we present our symptoms.

7. The way questions are asked, and the way we answer.

8. Manual Muscle Testing – validity and reliability.

We will then show how self assessment

can provide us with more information so that we can answer questions more accurately and ensure that the picture in the health professionals mind matches ours.

We do ourselves no favours when asked, “Can you get up a flight of stairs?” In just saying “Yes”, without adding, “but I go up one step at a time pulling myself up each stair with my arms, and for the last year or so have had to stop halfway and rest, but five years ago I was able to walk up and down normally and carry items.”

Polio survivors are notorious for being strong willed, determined and not requiring help to do even quite heavy tasks. Unfortunately we are also highly skilled in not ‘seeing’ or wanting to ‘see’ that we now need some help, human and/or aids and assistive devices. We expected that we might have to change the way we lived our lives when we got old – about 90 – but not in our 40’s, 50’s and 60’s.

Polio survivors have a variety of muscle weaknesses in a variety of areas. There is no set pattern – a nightmare for health professionals. We will demonstrate a few of the changes that we have noticed in how we go about our lives. If the way you do an action of daily living has changed in the last few years then there has to be a reason or a number of reasons for this.

We know that making notes is a good idea so we don’t forget anything, but arriving with pages of them and articles off the internet is more likely to set up a barrier than be helpful.

Appointment times are limited – there will probably not be time to discuss more than a couple of issues. To help you remember dates and medical facts it is an excellent idea to make up a large file on yourself containing anything you consider relevant, including newspaper items, certificates, a couple of photographs, covering:

1. Medical History

2. Work History

3. Physical Ability before current problems (include sports, exercise, hobbies, crafts, housework, etc).

4. Problems with diagnosis, assess-ment, treatment, employer’s under-standing of your new problem, welfare applications, etc.

5. Current problems.

We can be better prepared if we write

notes on what we want to discuss at the appointment. We can look at the file and take out the relevant information. Now look at your notes again as if you were the health professional at this appointment. If you were doing the report at the end of this appointment, what facts would you write down.

Health professionals have a variety of

ways of running their appointments and we cannot dictate how the appointment will go. We can, however, set the scene with a “Good morning, Dr. X, thank you for seeing me about my ……” “I have made a few notes so that I don’t forget anything and thought you might like a copy for your records.”

Remember the health professional is seeing you as you are now, they do not know what you were capable of five, ten, twenty or more years ago. They may think Polio, and go back to the short lecture they were given at College and assume you have been as you are now since your polio.

What is important is the change in how you do actions of daily living. Why have you changed the way you do this action?

As an aide to writing your own report we provide a three columned sheet of actions of daily living. (See page further in newsletter.) We appreciate there is little room in each block to write down more than a few words. You can either write up the information on a separate sheet of paper, making short notes that will fit, or use this as a basis for your own chart. IF you can show a series of changes for some actions, then do a chart just for them with added columns.

Then grade them, starting with the action that shows the highest level of change. The two or three actions that show the biggest change are the ones to demonstrate.

With the assistance of Gill Weir, a Senior Physiotherapist in the U.K., we also provide an assessment chart that can be used when examining you. It is important for continuity that the position you are examined in is recorded, e.g., if you were standing or sitting.

Mary Kinane, BA, PGCE, Chair

Hilary Hallam, FIST, Founder, Secretary and Newsletter Editor

Denise Carlyle, BA, MA, PhD, LRAM, Treasurer

Lincolnshire Post-Polio Network, U.K.

+44 1522 5001 34, +44 8701 600 840 fax

info@lincolnshirepostpolio.org.uk

www.lincolnshirepostpolio.org.uk

FECPPSG’s Editor’s Note:- Whenever I go to a new doctor, therapist, or for a new test, I always take a Medical History that I have filled in with everything I think they will want to know. If you would like a copy of this form, just let me know and we’ll be glad to either snail mail it to you, or e-mail it to you. I also do a separate Surgery Summary sheet, as I have had so many surgeries it would never fit in the space allowed for surgeries you have had. Similarly, if you have a lot of medications, it’s a good idea to do a sheet on that, listing the name of the drug, the amount you take each day, and the strength of the particular drug.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Reprinted from Volusia/Flagler Council on Aging newsletter.

UNDERSTANDING

YOUR PRESCRIPTIONS

When the doctor writes you a prescription, it is important that you are able to read and understand the directions for taking the medication. Often doctors and pharmacists use abbreviations or terms that may not be familiar. The following abbreviations may be used on the labels of your prescription medication. If you have any questions about your prescription or how you should take it, ask your doctor or pharmacist: What are the common side effects? What should I pay attention to? What should I do if I miss a dose? Are there foods, drugs or activities I should avoid while taking this medication.

Abbreviations and meanings:-

p.r.n. – as needed

q.d. – every day

b.i.d. – twice a day

t.i.d. – three times a day

q.i.d. – four times a day

a.c. – before meals

p.c. – after meals

h.s. – at bedtime

p.o. – by mouth

FECPPSG’s Editor’s Note:- Thought with Medicare Drug Plan now going into effect on January 1st, that this could be

important to many of us.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Reprinted from USA Weekend, Nov. 4-6, 2005

HealthSmart

YOU CAN TAKE CONTROL OF DRUG COSTS

By Dr. Tedd Mitchell

In a recent study published in The Archives of Internal Medicine, researchers explored prescription drug costs. They sent surveys to physicians nationwide, focusing on heart specialists and general practitioners. Of the more than 500 physicians who completed the survey, 93% understood their patients were concerned about out-of-pocket drug costs. Nearly as many also felt they should consider these expenses when choosing prescriptions.

Unfortunately, only about one-third of those surveyed reported that they knew how much money the prescriptions cost their patients.

Why? The most common reason cited was simply a lack of time to discuss it with the patient.

I know that sounds bad, but that’s where we are in 2005. We’re all living at a more hectic pace, and a doctor’s office is no different. Time spent with the patient focuses on diagnosing and treating a condition; little is left for discussing the costs of treatment choices. So, what can you

you do? The study discusses some prudent strategies, including:

■ Ask for samples. I save samples of specific medications to give to patients who I know have financial hardships. Judicious use of samples can help those on a budget.

■ GO OTC. Over-the-counter medications can be less expensive than their prescription counterparts.

■ Or go generic. Many generic drugs are high quality, and the switch from a brand name can save both patients and insurance companies a significant amount of money.

■ Compare brands. If you don’t want to use a generic medication or a generic is not available, some name brands are less expensive than others.

■ Shave and save. Medicines are available for many ailments, so your list of daily drugs easily may grow over time. Periodically review your list with your doctor. See if you can’t shave off unnecessary medications to save you money and also prevent potential complications from drugs you don’t need.

■ Consider assistance. You can get

financial assistance for prescription drugs. Go online and check out pparx.org/about.php, which links to more than 475 assistance programs and 150 pharmaceutical company programs.

Drugs not only can add years to your life, but life to your years. Because of this, we need to take every opportunity to make them as affordable as possible.

Tedd Mitchell, M.D. is medical director of the Wellness Program at Dallas’ Cooper Clinic.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

This came to us through several e-mails….. Our thanks to our e-mail family.

COSTCO, read this

Let's hear it for Costco!! (This is just mind-boggling!) Make sure you read all the way past the list of the drugs. The woman that signed below is a Budget Analyst out of federal Washington, DC offices.

Did you ever wonder how much it costs a drug company for the active ingredient in prescription medications? Some people think it must cost a lot, since many drugs sell for more than $2.00 per tablet. We did a search of offshore chemical synthesizers that supply the active ingredients found in drugs approved by the FDA. As we have revealed in past issues of Life Extension, a significant percentage of drugs sold in the United States contain active ingredients made in other countries. In our independent investigation of how much profit drug companies really make, we obtained the actual price of active ingredients used in some of the most popular drugs sold in America.

The data below speaks for itself.

Celebrex: 100 mg

Consumer price (100 tablets): $130.27

Cost of general active ingredients: $0.60

Percent markup: 21,712%

Claritin: 10 mg

Consumer Price (100 tablets): $215.17

Cost of general active ingredients: $0.71

Percent markup: 30,306%

Keflex: 250 mg

Consumer Price (100 tablets): $157.39

Cost of general active ingredients: $1.88

Percent markup: 8,372%

Lipitor: 20 mg

Consumer Price (100 tablets): $272.37

Cost of general active ingredients: $5.80

Percent markup: 4,696%

Norvasc: 10 mg

Consumer price (100 tablets): $188.29

Cost of general active ingredients: $0.14

Percent markup: 134,493%

Paxil: 20 mg

Consumer price (100 tablets): $220.27

Cost of general active ingredients: $7.60

Percent markup: 2,898%

Prevacid: 30 mg

Consumer price (100 tablets): $44.77

Cost of general active ingredients: $1.01

Percent markup: 34,136%

Prilosec: 20 mg

Consumer price (100 tablets): $360.97

Cost of general active ingredients $0.52

Percent markup: 69,417%

Prozac: 20 mg

Consumer price (100 tablets) : $247.47

Cost of general active ingredients: $0.11

Percent markup: 224,973%

Tenormin: 50 mg

Consumer price (100 tablets): $104.47

Cost of general active ingredients: $0.13

Percent markup: 80,362%

Vasotec: 10 mg

Consumer price (100 tablets): $102.37

Cost of general active ingredients: $0.20

Percent markup: 51,185%

Xanax: 1 mg

Consumer price (100 tablets) : $136.79

Cost of general active ingredients: $0.024

Percent markup: 569,958%

Zestril: 20 mg

Consumer price (100 tablets) $89.89

Cost of general active ingredients $3.20

Percent markup: 2,809

Zithromax: 600 mg

Consumer price (100 tablets): $1,482.19

Cost of general active ingredients: $18.78

Percent markup: 7,892%

Zocor: 40 mg

Consumer price (100 tablets): $350.27

Cost of general active ingredients: $8.63

Percent markup: 4,059%

Zoloft: 50 mg

Consumer price: $206.87

Cost of general active ingredients: $1.75

Percent markup: 11,821%

Since the cost of prescription drugs is so outrageous, I thought everyone should know about this. Please read the following and pass it on. It pays to shop around. This helps to solve the mystery as to why they can afford to put a Walgreen's on every corner. On Monday night, Steve Wilson, an investigative reporter for Channel 7 News in Detroit, did a story on generic drug price gouging by pharmacies. He found in his investigation, that some of these generic drugs were marked up as much as 3,000% or more. Yes, that's not a typo..... three thousand percent! So often, we blame the drug companies for the high cost of drugs, and usually rightfully so. But in this case, the fault clearly lies with the pharmacies themselves. For example, if you had to buy a prescription drug, and bought the name brand, you might pay $100 for 100 pills. The pharmacist might tell you that if you get the generic equivalent, they would only cost $80, making you think you are "saving" $20. What the pharmacist is not telling you is that those 100 generic pills may have only cost him $10!

At the end of the report, one of the anchors asked Mr. Wilson whether or not there were any pharmacies that did not adhere to this practice, and he said that Costco consistently charged little over their cost for the generic drugs.

I went to the Costco site, where you can look up any drug, and get its online price. It says that the in-store prices are consistent with the online prices. I was appalled. Just to give you one example from my own experience, I had to use the drug, Compazine, which helps prevent nausea in chemo patients.

I used the generic equivalent, which cost $54.99 for 60 pills at CVS. I checked the price at Costco, and I could have bought 100 pills for $19.89. For 145 of my pain pills, I paid $72.57. I could have got 150 at Costco for $28.08.

I would like to mention, that although Costco is a "membership" type store, you do NOT have to be a member to buy prescriptions there, as it is a federally regulated substance. You just tell them at the door that you wish to use the pharmacy, and they will let you in. (this is true)

I went there this past Thursday and asked them. I am asking each of you to please help me by copying this letter, and passing it into your own e-mail, and send it to everyone you know with an e-mail address.

Sharon L. Davis

Budget Analyst

U.S . Department of Commerce

Room 6839

Office Ph: 202-482-4458

Office Fax: 202-482-5480

E-mail Address: sdavis@doc.gov

FECPPSG’s Editor’s Note:- Fortunately, I use only one drug, Tomaxfin, which I get from Canada – but I have heard from several of my friends that they get their drugs cheaper at Sam’s (which is a similar store like Costco), then at any of the local drugstores. In fact, if you tell and show Walmart’s pharmacy that you are a member of Sam’s, they will give you the same price as you would pay at Sam’s.

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Reprinted from Florida Elder Update, May/June 2005

Take Precautions to

Avoid Identity Theft

Identity theft crimes continue to be on the rise and cost consumers and businesses about $50 billion each year. These crimes also damage the credit rating of thousands of people. In many cases, consumers do not even realize that they have had their identity stolen until they attempt to make a major purchase and are rejected by a bank or finance company.

Florida Agriculture and Consumer Services Commissioner Charles H. Bronson says that is why it is so important to consumers to regularly check their credit information with the three major credit bureaus – Equifax, TransUnion and Experian.

Beginning June 1 (2005), the major credit bureaus are required to provide consumers with one free copy of their credit report annually. Commissioner Bronson also offers the following consumer protection tips:

· Mail payments for bills from post office collection boxes. Tear or shred charge receipts, copies of credit applications, insurance forms, physician statements, expired credit cards and credit card offers before discarding into the trash.

· Store Social Security cards, credit cards, cancelled and extra checks, passports and any additional identity documentation in a secure place.

· Remove extraneous information, such as middle name, phone number, Social Security number or driver’s license number from your checks.

· Review credit card, telephone, cellular phone and bank statements for irregularities and be aware of your billing cycles. Contact creditors immediately if you find a discrepancy. Close all accounts that are no longer needed or used. Write a letter to the company asking them to verify, in writing, that the account has been closed.

· Use passwords on all your accounts. Avoid picking easily determined passwords such as your date of birth, mother’s maiden name or the last four digits of your Social Security number.

· Send “opt out” letters to businesses that you have a relationship with, restricting them from selling, renting, distributing or exchanging your personal information. Advise the three major credit bureaus that you do not want your personal information shared for promotional purposes.

· To stop receiving “pre-approved” credit offers, call 1-888-5-OPTOUT (1-888-567-8688).

Source: Department of Agriculture and Consumer Services

~*~*~*~*~*~*~*~

How Identity Thieves May

Get Your Personal Information

· From businesses or other institutions by:

- Stealing records or information while they are on the job;

- Bribing an employee who has access to these records;

- Illegally accessing these records with computers; or

- Tricking employees into divulging the information.

· By stealing your mail, including bank and credit card statements, credit card offers, new checks or tax information.

· By rummaging through your trash, the trash of businesses or public trash dumps in a practice known as “dumpster diving.”

· They may get your credit reports by abusing their employer’s authorized access to them, or by posing as a landlord, employer or someone else who may have a legal right to access your credit report.

· By stealing your wallet or purse.

· By completing a “change of address form” to divert your mail to another location.

· By stealing personal information found in your house.

· By stealing personal information from you through e-mail or phone by posing as legitimate companies and claiming that you have a problem with your account.

Source: Federal Trade Commission Web site, http://www.ftc.gov

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Deby Morin has been a member of our support group almost since our inception. When she e-mailed me that she and Glenn were making this trip I asked her to please keep a journal and do an article for us. Here is the article. Thanks, Deby and Glenn.

Journey to Turkey

A Handicapped Traveller’s View of Traveling in a Country Desiring to Join the Modern World.

September 7-22, 2005 by Glenn and Deby Morin

We decided to visit our daughter and her family who live in Turkey. We discovered through many tries that Delta had the most direct flights.

But, they don’t have the most comfortable planes. The seats were small and the arms did not move. Thanks to the small transport chair, I was able to get from it to the seat. But sitting all those long hours was uncomfortable and eating was tough. The flight crew was very nice, but there wasn’t much they could do. We had made sure that a transfer chair would stay on board so that if I needed to use the restroom that there was a way to get there. We ch

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP - Vol. 12 #4

12 Eclipse Trail / Ormond Beach, FL 32174 / 386 676-2435

E-Mail:- bgold@iag.net -- Web Site:- home.iag.net/~bgold/polio.htm

JANUARY/FEBRUARY 2006

TO ALL OUR FRIENDS --

A MOST HAPPY AND HEALTHY NEW YEAR 2006

A LOVE FILLED VALENTINE’S DAY

MEETING NOTICE