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.

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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.

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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.

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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.

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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

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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

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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 chose the restroom in 1^st class because it wasn’t used as much and was closer to the bulkhead seats we had. It turned out to be a very small restroom, but Glenn could just push me inside and I could transfer over. We won’t even get in to trying to get pants up and down. But, at least we had a way for me to go to the restroom during the 19 hours of travel.

Once we landed in Istanbul, Turkey, a very nice young man came to get us at the gate. He put me in a very small transport chair, did not strap me in and away we went. It was a ride to be remembered. But, because he was with us, we did not have to wait in line for visas or customs, just whisked us right through. I kept asking him for my wheelchair, which had been gate checked in NY. He kept saying that it would be in baggage. So we went to get the baggage, and the chair was not there. He went someplace and came back with it. But, still he would not let me transfer to it. We realized later that he thought he was taking me directly to a car or cab and didn’t want to have me transfer more than necessary. He didn’t speak English and we didn’t speak Turkish, so the communication was a little hard.

The beautiful faces of our family waiting for us as we came out of the baggage claim area was wonderful to see.

We chatted as Glenn and our son-in-law went to sign in for the van we rented. Our son-in-law drove and gave us the “scenic tour” on the way to the hotel. Our daughter had tried to book a place over the phone, trying to get them to understand that a handicapped room was needed. We came to find that the Turkish hospitality will do anything and everything to accommodate you. It took a few hotels, but we finally found one with an elevator big enough for the wheelchair. A big elevator in a Turkish hotel is maybe 30 inches by 35 inches!! The hotel staff was wonderful. The wait staff from the sidewalk café attached to the hotel would come running if it even looked like we were going back in the hotel to put up a ramp made of 2 metal slats to get me up the 3 steps into the hotel.

Our room was very nice - a double bed, a small desk, an armoire, and a bathroom. The only problem was that the bathroom was a 6 inch step up. If it hadn’t been for Glenn, I would never had been able to go to the restroom or shower while in Istanbul. The shower was a semi circle stall that was just big enough to accommodate my shower stool. Glenn had insisted that we pack it. I can just imagine what the baggage screeners thought when they saw the metal and plastic in the suitcase! But it worked well and I was glad to have it. The alternative is to sit on the toilet and use the hand shower there. All Turkish bathrooms have a drain in the floor, so it wouldn’t have been a big deal.

We spent 3 wonderful days in Istanbul. Glenn and I had to stay awake until at least 9 pm to get through the first day of jet lag. We landed at 10:30 am. But, with all there was to see, it wasn’t hard to stay awake.

We spent the afternoon walking around Istanbul. The sidewalks are uneven and hard to negotiate - I was fortunate to have my husband and son-in-law to push me around. Our hotel was situated across a plaza from the world renown Blue Mosque. The plaza was a little park that ran down the center of this part of town. It was very nice. We at a sidewalk café across from our hotel and just generally enjoyed each other.

Our second day in Istanbul, we went for a sightseeing tour on a boat on the Bosporous Strait - the waterway that divides Istanbul Asia and Europe. Glenn and our son-in-law had gone ahead to see if it was feasible to ride the trams - electric trains - down to the dock area. They decided that getting there was no problem, but once there, negotiating a 18 inch curb (with no curb cuts) in the middle of a busy highway might be a little treacherous. So we opted to take the van down. The manager of the hotel (once again that incredible Turkish hospitality!) offered to drive us down in our van, drop us off and pick us back up. So that’s what we did.

Getting on the boat was another thing. There were very steep steps to get up to the dock. All of this was made of concrete. So with the help of Glenn, our son-in-law, and 3 guys from the docks, I was carried up the 4 foot tall steps and over a very narrow gangplank to the deck of the boat. Glenn then took me down the last few steps into the salon, where it was huge inside. We chose a seat next to the window and just sat and watched the scenery. It was a wonderful trip and we wouldn’t have missed it. When we got back to the dock, Glenn, our son-in-law and two dock workers carried me off the boat.

We then called the hotel, and the manager came to pick us up in our van.

We had a lovely dinner in a rooftop restaurant atop one of the kids favorite hotels. It was wonderful.

The next day was bazaar day. What an experience. We once again had the manager drive us to the area and drop us off.

The next 4 hours went by so quickly and in a whirl of excitement. This is almost like a flea market, but with real shops - mostly very small ones. And everyone wants to sell you something! They know just enough English to step in front of you and ask if you want to buy something. They are very aggressive, mostly male. We bought a few items for gifts for the folks back home. After a while in the crowded, noisy shopping area (the malls at Christmas have nothing on the Grand World Bazaar on Saturday), we needed a break. So we went outside the bazaar to a sidewalk café to have lunch. We had sandwiches and cokes. Our granddaughter needed a skin crème for a rash and itching, so she asked her Grandfather to go to the pharmacy across the street. Glenn had wanted to visit one since we had landed. So we waited for them. The pharmacy owner was so honored to have an American pharmacist visit his pharmacy that he insisted that Glenn get a picture with him. So they obliged and talked, through the interpretation of our granddaughter and grandson, about which crème was best. They arrived at a choice and bought it. Glenn was thrilled to tell our daughter how much it cost (about $7) there and that this would have been a prescription and cost lots in America.

We returned to the bazaar for a few more hours and then decided to go back to the hotel. Our “driver” was unavailable, so we decided to take the tram. Where we came out from the bazaar was right in front of a station, with a ramp! So we went up the ramp to buy our tokens. The clerk would not let me go through the handicapped entrance - we never did figure out why - so we had to go out on the street amidst the cars and the guys lifted me up the 18 inches to the platform. Oh well! Once on the platform, everything was level. So with my grandson clearing the way, Glenn pushed me onto the train. We got out at the right stop close to the hotel. It was interesting and I felt like we did well with this little challenge.

We went back to the hotel to freshen up and have another bathroom break. I didn’t even try to go to the restroom anywhere else. But then, neither did our daughter or granddaughter..

We then went to dinner at a café across the square and then to our favorite place for chai (tea). The next day we would be driving the 5-7 hours to get to Ankara - where the family lives.

We checked out of the hotel after making arrangements to come back in 2 weeks on our way back to the States. This way we knew the hotel and could be sure of the accommodations. We only rented 1 room with enough beds in it for 4 of us as the kids would be in school.

We started out fairly early on Sunday morning to head for Ankara, where the family lives. We traveled on the biggest highway in Turkey. We needed to take a break and stopped at a bus station just outside of Bolu. We were pleasantly surprised to find that this “service plaza” had a separate handicapped restroom. As we have all found in any of the handicapped restrooms, the seat was very loose, but it was wonderful to have such a nice big room to go to the restroom in. We all piled back in the car and headed to Bolu, to meet some friends of theirs and have lunch.

After lunch, we went to the chai park in the middle of town and visited for a while. All too soon, it was time to get back on the road. We arrived in Ankara, their apartment at around 6:45pm. We weren’t sure if the elevator was going to be big enough for the wheelchair. Our son-in-law thought we might pull into the garage to unload the luggage and chair and then use the elevator to get up to the 1^st floor where they live. Since they don’t own a car, we had to borrow the garage door opener from the building superintendent every time. The elevator was just big enough, so we were relieved. The rest of our stay, sometimes we would use the garage entrance, sometimes the guys would carry the wheelchair down the 3 steps to the street. All of the doors in the apartment were big enough to get through, except the master bedroom bath- where we would use the shower. So they guys took the door off. The other bathroom was where would use the toilet and sink.

The next day we spent unpacking and getting organized. Since we had the use of the van, our daughter was able to help a friend take a meal to a family with a sick child who was in the hospital. She had meningitis and people were supplying meals to them. Then they came back to the apartment and we visited.

On Tuesday, we did some local sightseeing. We visited Ataturk’s tomb. (He is called the “father of modern day

Turkey”). We weren’t sure exactly what we would find as far as accommodations to get me around, but we went anyway. To get to the museum, there are many marble steps. But, there was a “lift” - a platform to take me up the stairs. Once up, we were able to get around pretty well. There were ramps into most places, and at every doorway where there was an 18 inch ledge, someone would put up a ramp for me. These were a little less steep than most of the ramps we were to encounter, as this facility was built for the Turkish people by the Americans when they had the military base there. It was interesting to go up to the tomb itself, as this was several flights up. Again, a platform lift that went up the steps and around corners. At one point, I had to get off the lift, cross a hallway, and get on another lift. But, I got to see everything and it was great to not miss out on all of this history. The only place that did not have a ramp was at the restrooms. There, Glenn and our daughter had to wrestle me up the 18 inch door step. When we got to the restroom, it was a “pull in” type. This would have been fine, except the door opened to the inside. So, our daughter stood in the doorway while I used the facilities.

We left the museum and walked down the street to a sidewalk café. We had a very good lunch in the area. Then we caught the metro downtown. This was exciting for us, as we had to get on a large elevator - more the size of a freight elevator - and go down 2 levels below the street. We caught the train without incident. When we came off of the train - 2 levels below the street - there were shops everywhere. Shoes, clothing, household goods, etc. It just amazed us.

We caught the elevator up to the street and walked around a bit. It was very crowded. We went into a household goods store where I found the most beautiful tea set. Our daughter negotiated the price and we bought it. Then we decided to get a snack and some fresh bread for dinner. We went to a “pastry shop”. Like so many food places that we saw, this was an open stand facing the sidewalk with the ovens in the back. There were so many pastries and breads it was hard to choose what to get. We decided on our snack and bread, then looked for a place to sit and eat. There are many tables set up all over outside, and many benches. So we found a place next to a fountain and sat to eat.

We did a little more shopping and then decided to head home. We decided to take a taxi as any other mode of transportation meant several transfers. We got a call from the kids while we were in the taxi letting us know that they were home from school.

By the time that our son-in-law got home from work, it was getting late. So we decided to go to the mall for dinner and pick up a few things. This was fascinating. The store we went into was like a Wal-Mart. It had clothes, food, school supplies, shoes, etc. We picked up the things we needed. As our family was standing in line, we asked if we could go to the pet store to see what they had. So our grandson took us there. The mall elevator wasn’t working, so we went through a department store (much like Penney’s) and used theirs. We were intrigued at the birds they had and how many dogs they had. It was time to leave, so we found a “people mover”, got me on it and it took us up to the floor we were parked on and we headed home.

The next day we went to visit the kids’ school. This was another challenge, as once again, the ramps were steep. They had been motivated to modify the school the previous year because they had a boy in a wheelchair attending. So they basically covered over the 1 - 3 steps on each level that lead down to classrooms with concrete. But, there was also an elevator to go from floor to floor. Since the school is brand new, it was really nice.

We went to a local bazaar afterward. There were clothes, household goods, and lots of fresh fruits, vegetables, and nuts. This was more like an open air flea market. The vegetable stands were set up so beautifully, that I had to take pictures. The fruit and vegetables are huge there. And they arrange them so nice. We bought a few things for dinner and went to eat at one of the kids’ favorite restaurants. Again, we ate outside. It was very good.

We didn’t have time to eat dinner, so we just got ready to go to church. We drove there in the van, and several of the men from the congregation had to carry me down steps to the church. This was the Iranian Christian Church. It was quite humbling to be there and worship with these refugees. They would sing praise songs in Farsi and the ones we knew, we would sing along in English. After the service, they had a time of fellowship with food and tea and then we went home.

Thursday Glenn went to work with our son-in-law. I stayed home and helped our daughter straighten the house some. Her Farsi language teacher came over to give her a lesson. I read and held our grand kitten until it was time to cook. One of the things our daughter does is try to learn more about the culture through the food. So I got drafted to write the recipe down in English so that our daughter could later use it as a learning tool and translate it into Farsi. The food, a stew like dish, was wonderful and I had a great time “talking” with this lady.

That evening we had a young family over for dinner. The husband works with our son-in-law at his business. We had a wonderful evening and everyone enjoyed the meal. Our daughter added Iranian rice to the meal along with a fresh salad, sliced tomatoes, and some greens we had bought at the market.

Since we were all leaving to go to the Mediterranean the next morning, we went to get packed. Glenn and I decided to shower that evening so everyone else could get their showers in the morning.

As I was in the shower, sitting on my shower stool, I lost my balance and fell out of the shower, landing full force on my left knee. The pain and rapid swelling told me this was not good. Glenn was able to get me off the floor and into my chair. We put ice on it and I took Tylenol, but by 1am, I knew that this was serious. The knee was huge, red, and hot. My shin was all ready bruising and the whole leg was swollen. I awoke Glenn and we prayed together and then decided to get the kids’ up to go to the emergency room.

We drove to a brand new - only open 9 months - hospital fairly close to the apartment. When we pulled up at the emergency entrance, our son-in-law asked where he should park. They immediately came out to the van with a “gerry” type chair, transferred me into it, and took me right into an examine room. Within 10 minutes, the doctor came in. Through our daughter translating everything, we got through the explanation of what had happened and he sent me for X-rays. The table came very low, so the transfer with lots of help was pretty easy - though painful. Back to the examine room and the doctor told us nothing was broken. This was a blessing. He prescribed anti- inflammatory and was prepared to send us on our way, when Glenn stepped in and asked about pain medicine. They take a more holistic approach to treating pain. The doctor explained that they didn’t want to “protect” the pain (or we would say mask it) because if it eased up and there was something else wrong, then I might not seek treatment. Glenn kept insisting that we need something for pain, so he gave me an anti-inflammatory shot. He also wrote a prescription for more anti-inflammatory pills. Since this is a country with socialized medicine, we were shocked to see that the total bill for the emergency room visit, doctor, and X-rays was $234!!!

So we went in search of an all night pharmacy. They do not have 24 hour pharmacies there, which Glenn found interesting. Instead, there is a list of pharmacies that are on call. You go to the pharmacy, call a telephone number posted on the door and the pharmacists comes down from upstairs (we weren’t sure if this was an apartment or not) to fill the prescription.

When we got home, we iced the knee down again. They don’t use ice for a lot of things over there, so the doctor told us we could ice it down twice a day - but only twice. They think that cold will make you sick.

After a pretty miserable few hours of sleep, our daughter got up with the kids and sent them on to school. We knew that the Mediterranean was just not going to be in the cards for us. We spent the rest of the morning sleeping and trying to rest. We got up around 10 and had breakfast. Glenn and I had talked about going on to Cappadocia the next day anyway. We might not get to the Mediterranean, but we could at least go to the rock churches. Besides, our reasoning was I can keep the leg elevated in the car as well as sitting at home.

Our daughter spent most of the day on the phone trying to contact local doctors that they knew to get some kind of pain medication. She finally was able to get their family doctor, who, after much discussion, agreed to prescribe something for pain. When she got the name of the medicine, she called our son-in-law to tell him and Glenn what the doctor was going to call in. So they told the pharmacist and he just reached behind the counter and sold it to them. This was basically Tylenol with codeine and anti-spasm medicine. Glenn also got a new ace bandage and tried to buy an ice bag. They had no such thing. But the pharmacist finally acqui-esced and reached under the counter and sold Glenn a hot water bottle that he said we could freeze. The pain medication helped some and I was able to take a nap on the couch.

We got up fairly early the next day to head out. Again a long car ride. We rigged up a piece of wood under the wheelchair pad to support the leg. It worked well. We stopped at another bus stop, which once again had a separate handicapped restroom with a loose seat. I was just glad to get to go and Glenn went with me to help.

We stopped at the salt lake - Tuz Golu - where we bought some souvenirs and took pictures. This is where they get a lot of the salt they use on tables here. Glenn went out on the crunchy salt to take pictures of the other shore.

We finally came to Urgup - a very rural town with farmers on tractors pulling big wagons full of harvested grapes, melons, and vegetables. We found our hotel which our daughter had found on the internet which said that they had handicapped rooms.

We got checked in and headed out to Avenos. On the way there, the views were spectacular with the “fairy chimneys” and rock formations. We went to the Cultural Center. They have come to specialize in the pottery that the area is famous for. The clay comes from the river and is very plentiful. The name of the shop we went to was called “The Potters’ Place.” I could not go inside as there were many steps. Afterward, we went to lunch.

We had the local specialty - gozeme - a soft tortilla type dough stuffed with cheese or cheese and potato or hamburger. It was very good and we enjoyed the food as well as the street cats and our perfect view of a mosque and fountain. It was a pretty little town.

We headed back to the hotel to relax and prepare for dinner. The price of our rooms included our breakfast and dinner. Glenn and I felt like real European tourist, as this is what they look for in a hotel.

The hotel was beautiful and we were pleased at the handicapped room. The bathroom was sufficient. With the leg out in front of me, we had to take the wood out and lower the leg. The toilet was right at the level of the chair, which was nice. The shower was a different kind of configuration. It was a small roll in, which was good for me because I could reach the controls for the shower. But, the chair was a fixed plastic seat in the corner. And it kind of leaned forward. So we put my shower chair in front of me, since I felt like I was going to fall off, I used one hand to steady me and the other to wash with. The fixed seat was slick, and it felt like I was slipping. Of course, after the fall, I admit I am a little nervous. But, it worked well. We had dinner - a buffet - at the hotel and breakfast, too. The food was good and we enjoyed the grounds and the staff was wonderful.

We headed out early the next morning to go to the Neveshir to see the rock churches. This was interesting, as I could not go inside any of the churches. Most of these are built in caves and have either steps or a ladder to get into, or have very narrow openings. The hills are very steep and at some points, it took 3 men to get me up the hills. We decided to have lunch there and ate in one of the open air cafes. We did a little more shopping and bought souvenirs, then headed back to Ankara, arriving home around 7. Had pizza for dinner and then off to bed.

Monday we used to get ourselves packed for the trip home on Thursday. Glenn helped me get a shower using the toilet to sit on in the bathroom and it worked out well.

Tuesday our daughter had a group of women over for a prayer meeting. It was a sweet time for me as they included me in their lesson and prayer time.

Wednesday, we waited for our son-in-law to come home from work to start the 5 hour trip back to Istanbul to catch our flight early Thursday morning and turn the van in. It was very hard to say goodbye to our grandchildren. They were going to stay with friends overnight so they wouldn't miss school. Our daughter and her husband would take the bus back to Ankara and arrive home in the early evening. We arrived early evening, checked into our hotel and went to our favorite sidewalk café across the street to say goodbye to our favorite waiter and have dinner. Glenn and I had packed snacks to take on the plane with us and decided to send these home with him for his 2 young children. We had a pleasant dinner and went to bed fairly quickly - we were getting up at 5am.

It was very hard to say goodbye once again. We cried and just didn’t want to let each other out of sight.

We flew Air France from Istanbul to Paris. They were the worse airline! They refused to gate check my chair. When we got to Paris, everyone disembarks the plane to the tarmac where you are picked up by buses. For us, it was a fork lift device with a small seating area. The Air France people were very uncooperative and would not even try to find my chair. When we got to the connecting flight - Delta to Atlanta - they were much more concerned about making sure the chair was on the flight and would be with us when we got off. Both flights were totally uncomfortable, as the leg was so swollen and sore and there was no place to stretch it out.

When we arrived in Atlanta, the chair was on the flight and at the gate. We were so happy. We had to go through customs there - claimed all of our bags and then went through inspection. Then on to the last flight to bring us back to Daytona. It got dark during the flight and this is where Glenn and I “hit the wall”. It had been a long 24 hour day of travel and our poor bodies were exhausted. The leg was in a lot of pain and was huge. We just wanted to get home to our own bed!

We were picked up at the airport by a friend who had been house and pet sitting for us. Of course, 2 out of the 4 bags did not make it home with us. They later found them and sent them to our house buy courier.

The final say on this trip:

We loved Turkey! We loved being with our family and seeing them function so well over there. We loved the Turkish people. They were all so helpful and so attentive! They are a very gracious and hospitable people.

My advice would be not to miss this historic and wonderful country. But if you are mobility impaired in any way, make sure to take along a good companion. Turkey is not up to ADA standards, and we weren’t even expecting the handicapped facilities that we found. But it was worth the hassles to see it all and experience it!

FECPPSG’S Editor’s Note:- I have not edited the article and only wish that I could experience the travel that Deby did.

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The following was sent to me, via e-mail, from Gary Fredericks, of Horsehead, NY.

Inner Strength

If you can start the day without caffeine,

If you can get going without pep pills,

If you can always be cheerful, ignoring aches and pains,

If you can resist complaining and boring people with your troubles,

If you can eat the same food every day and be grateful for it,

If you can understand when your loved ones are too busy to give you any time,

If you can take criticism and blame without resentment,

If you can ignore a friend’s limited education and never correct him

If you can resist treating a rich friend better than a poor friend,

If you can conquer tension without medical help,

If you can, relax without liquor,

If you can sleep without the aid of drugs,

...Then You Are Probably The Family Dog!

(Sorry – just had to put this in. I loved it…. )

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My “Adventures” – contd

Upon my return from the cruise I called the dealership and was told the car would be ready in 2 – 3 days….. Finally picked it up and it was just like new (on the outside).

Now for the cruise – the bus that was taking us to Port Canaveral actually came directly to my house to pick me up. I had told the travel agent that I had no way to get to the pick-up point with my
scooter because my car was being serviced. The bus that came had absolutely no problem getting my Rascal into the luggage compartment of the bus.

When we reached Port Canaveral, the scooter was taken off the bus first and, again, no problem. We went through the terminal with no problem – they have an elevator that held my whole group (8) – which allowed us not to lose track of each other. When it was time to board the ship (Royal Caribbean’s Mariner of the Sea) my scooter had no trouble getting up the gangplank (there were crew members to help if it was needed).

The cabin my friend Helen and I had, was an outside one with a balcony. It was large enough to turn my scooter around in without any problem. The bathroom had grab bars on every wall. The walk-in shower had a pull-down seat if needed. The balcony was accessible and a delight to use. The doors leading to the cabin were heavy, so it would be a good idea to have someone with you that can open it for you when you’re going in or out.

The ship was 99.5% handicap-accessible.There were ramps everywhere you wanted to go – from the library, to the shopping area (the Promenade), to the pools, to the gambling casino. The only areas that I found not to be ramped were the two theatre areas. There were spaces in the back row where wheelchairs/ scooters could be seated in order to watch the shows.

My scooter made me a very popular guest in the dining room. Whenever I went there (whether for breakfast, lunch or dinner) the waiters fought over who would “park” my Rolls-Royce. This was my fourth cruise and, to tell you the truth, I never saw so many scooters, wheelchairs – both manual and power, walkers and canes as there were on this ship. It just goes to show that more of us are taking advantage of being able to go on cruises and to enjoy ourselves. I had been told that the Royal Caribbean line had the best handicap facilities. After two trips on a Royal Caribbean ship, I have to agree.

Now, as to the various ports of call: Labadee (Hispaniola), could only be reached by tender. This was mainly a beach area and I decided not to attempt the excursion (also I was a little chicken). Ocho Rios, Jamaica – here the ship docked and I did get off the ship without any problem. I did not do any of the shore excursions as I wasn’t sure if they could accommodate my scooter – I did see a couple of buses that would have….. BUT, when my friends (and others) came back from their excursions, they told me I was right not to go because even the ones that were supposed to be on more or less easy walking, turned out to be rough (with stones to walk on, hills to climb up and down, and steps where they were told there were none). The next port of call was George Town, Grand Cayman – there again I was too chicken to attempt the tender. The last port was Cozumel, Mexico – guess what….. I finally decided to attempt the tender (Hurricane Wilma had thoroughly destroyed the docking area there so we had to be tendered to shore) –I was able to get on the tender without too much trouble and they then picked up my scooter and put it on the tender (if you are not able to walk at all, they will pick up your chair and put you on the tender – not sure about a power chair). When we got to the Cozumel area where the tender was leaving off people, the tender motion was going at a rather fast clip and the ramp going down was a little steeper then I wanted to attempt sooooo, I told them I would just stay on the tender and go back to the ship. Upon my return to the ship they off-loaded my scooter first and then me – the gangway I had to go down was somewhat steeper than the one I went up (it was a different “entry” then the one I left from) and it took me a good 2 minutes to go down – the crew watched me with an eagle eye to make sure I wouldn’t fall and applauded me when I got to the bottom of the ramp.

Oh, yes, I did do some gambling in the casino – not slots, blackjack….. while there were no actual handicap spaces as some of the Vegas hotels now have, they were more than happy to move chairs around so that I could get my scooter in to play.

To show you how much we all enjoyed the cruise – we ALL booked to sail on the Mariner again in November 2006, doing the Eastern Caribbean that time. All I can say is that you shouldn’t deny yourself going on a cruise – it is a wonderful vacation….. you don’t have to pack and unpack every day, you know exactly where you will be eating (either in the dining room, or in the buffet areas), and that there will be shows of one kind or another every night.

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Traveling and Sharing a Room

with a Handicapped person.

When you travel with a handicapped person, doors open for you. You never have to wait on line for anything. They seat you immediately in the dining room and when a person owns a scooter, life really becomes easy. You can dump all your belongings in her basket and walk in free as a bird - without as much as carrying a pocketbook. You have special treatment going and coming off the boat. They accommodate all wheelchairs at every show. Most ships are now built to accommodate handicapped people. Even at the casinos, chairs are pulled away so that the handicapped person can lose their money alongside the able bodied.

Those who were shut-ins are, for the first time, seeing the light of day. I saw many wheel chairs and scooters every-where on the ship, as well as walkers, and innumerable canes.

Don't hesitate, Make your reservation now. It is a wonderful experience.

Helen Greenbaum

Roommate with Barbara

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One of our members asked me if we place items for sale in our newsletter – told him we don’t do it often but if someone asks us to we try to accommodate them, sooooooo

2004 JAZZY1113 electric wheelchair – perfect condition – never used –

300 lb capacity – on board charger – disassembles for transportation –

$1,995. or best offer. Call 386-673-0231.

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DUES FOR 2006:- Please take a look at your mailing label - on it you’ll see the month and year we received your 2005 dues, i.e., 01/2005 means it was received in January 2005, so your 2006 dues was due in January 2006. If your mailing label has the year first and then the month, i.e., 2005/01 it means that you indicated to us in January 2005 that you wanted to receive the newsletter but paid no dues. That’s OK as we still believe that anyone who wants information should receive it – but we do need you to return the tear sheet with either the “Dues” box checked or the “Keep me on the Mailing List” box checked.

Your dues covers the supplies we need to send out the information packets to all inquiring about Post-Polio Syndrome, any other correspondence we do, and postage for publicity and for the out-of-country (25) newsletters that we send out. We’re fortunate in that the “Free Matter for the Blind and Physically Handicapped” status takes care of the postage for the over 450 newsletters sent out within the United States. We network with approximately 60 other support groups throughout the United States, Canada, Australia and New Zealand – some 40 of these reciprocate by sending us their newsletters. We receive as many dues checks from our out-of-state members as we do from our Florida members. So, please check your mailing label and return the tear sheet if your date is due. We really need your support now more than ever. Just to keep you advised, in addition to the previously mentioned countries, our newsletter goes to England, France, Germany, Israel, Panama, Portugal, Lebanon, South Africa, Sweden, Taiwan and Wales.

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WHEN YOU MOVE:- PLEASE be sure to send us your new address. Sometimes the post-office will return the newsletter to us with a “forwarding period expired” notice on the front with your new address but most of the time they are just returned to us with “address unknown” on it. SO, if you want to continue receiving the newsletter it is UP TO YOU to make sure we have your new address.

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This was in our newsletter several years ago but just wanted to put it in again…. B

LESSONS FROM GEESE

1. As each bird flaps his wings, it creates an uplift for others behind him. There is 71 percent more flying range in V-formation than in flying alone.

Lesson: People who share a common direction and sense of purpose can gets there quicker.

2. Whenever a goose flies out of formation, he quickly feels the drag and tries to get back into position.

Lesson: It's harder to do some things alone than together.

3. When the lead goose gets tired, he rotates back into the formation and another goose flies ahead.

Lesson: Shared leadership and inter-dependence gives us each a chance to lead as well as opportunities to rest.

4. The geese in formation honk from behind to encourage those up front to keep up the pace.

Lesson: We need to make sure our honking is encouraging; not discouraging.

5. When a goose gets sick or wounded and falls, two geese fall out and stay with her until she revives or dies. Then they catch up or join another flock.

Lesson: Stand by your colleagues in difficult times as well as in good.

Author Unknown

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FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail / Ormond Beach, FL 32174

386-676-2435 / e-mail address: bgold@iag.net

DATE: Sunday, January 15th, 2006

TIME: 1:00 – 4:00 PM

PLACE: Red Lobster Restaurant

International Speedway Boulevard

Right off I-95 – Exit 261– Daytona Beach, FL

(head EAST for about 1/4 mile)

PROGRAM:- Speaker Dr. Gudni Thorsteinsson, of the Mayo Clinic in Jacksonville.

He will talk to us about – Other health concerns in PPS, ie: heart,

weight, etc.

Cost of the Luncheon is $10.00 all inclusive. As usual we will have a choice of several different menu items.

Please send in your reservation tear sheet and check

no later than January 12th, 2006

Any questions call Barbara at 386-676-2435.

==================================================================================

R E S E R V A T I O N F O R M

January 15th, 2006 Luncheon Meeting

Name:- _______________________________ Phone No.:- _________________

Number of People Coming:- _________ Number in Wheelchair(s):- ___________

Amount of Check Enclosed:- ________________ @ $10.00 per person

Make check payable to and mail same to:

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail -- Ormond Beach, FL 32174

01/2006

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

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 ECLIPSE TRAIL

ORMOND BEACH, FL 32174-4936

386 676-2435 e-mail:- bgold@iag.net

DATE: Sunday, January 15th, 2006

TIME: 1:00 – 4:00 PM

PLACE: Red Lobster Restaurant

International Speedway Boulevard

Right off I-95 – Exit 261– Daytona Beach, FL

(head EAST for about 1/4 mile)

PROGRAM:- Speaker Dr. Gudni Thorsteinsson, of the Mayo Clinic in Jacksonville.

He will talk to us about – Other health concerns in PPS, ie: heart,

weight, etc.

For further information call:- Barbara 386-676-2435

====================================================================

2006 DUES/MAILING LIST

____ Dues Enclosed ____ Keep me on mailing list

If sending dues, please make Check ($5.00) Payable to and Mail to:-

FLORIDA EAST COAST POST-POLIO SUPPORT GROUP

12 Eclipse Trail, Ormond Beach, FL 32174-4936

NAME:- __________________________________________________________

ADDRESS:- _______________________________________________________

E-MAIL ADDRESS:-__________________________ FAX #:- _______________

TELEPHONE NO:- Home _______________________ Office ________________

Date of Birth:-_________________ Wedding Anniversary:- ________________

Name and Date of Birth of Spouse:-_____________________________________

Support Group I belong to:- ____________________________________________

01/2006

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

Support Group I belong to:- ____________________________________________