Your Companion for the Challenges of

Post-Polio Syndrome

The World-Wide Fellowship of Polio Warriors

Le communiqué – Number 13

Here is the June newsletter – hope you enjoy it

In this newsletter:

Did You Know? – Half your bones are in your hands and feet

A Visit to Ireland - From One of Our Trustees

Useful Websites

To Make You Smile!

A Message from Peter Thwaites

Finding A Hobby

A Thought – Rev Florence Lunde

Quiz No. 7

Did You Know? – Half your bones are in your hands and feet

Fingers and toes More than half of the bones in your body are in your hands and feet. There are 27 in each hand and 26 in each foot, and the way that they are arranged is remarkably similar.

Your fingers each contain three bones, except for your thumbs, which only have two. Your big toes contain two bones, and your other toes each contain three. The bones in your fingers and toes are called phalanges.

Metacarpals and metatarsals The palms of your hands are made up of five bones called metacarpals. Your knuckles are the ends of your metacarpals. The soles of your feet consist of five bones arranged in the same way as your metacarpals, they are metatarsals.

Wrist bones Your wrists consist of eight small nugget shaped bones held together by ligaments. They are called carpals and are arranged in two irregular rows held together by ligaments.

Carrying weight The two largest bones in your feet carry most of your weight. Your calcaneus, or heel bone, and the talus, between your heel bone and the bottom of your shinbone, are two of the seven tarsal bones that make up the back part of each foot.

Arches Your foot bones are arranged to form three strong arches: two length ways, and one across your foot. Ligaments bind your foot bones together along with the tendons of your foot muscles. This helps to hold your foot bones firmly in the arched position, but also allows some give and springiness.

Your Trustees: (In alphabetical order) Corazon Thwaites - Philippines; Farid Mohammed - Republic of Yemen

Rev. Florence Lunde - USA; Joan Deverell - UK; John Britt - USA; Peter Thwaites - UK We are honoured to report that our friend and colleague Dr. Richard Bruno, and Dr. Bishal Pokharel have agreed to become Patrons of our Fellowship.

2

A Visit to Ireland - From One of Our Trustees, John Britt

“This story is to share with you some recent experiences from my Irish travels, from the perspective of an American tourist, and a polio survivor too.

Polio struck me at the age of two, in a small town in North Carolina. I use crutches and a KAFO brace with a built-up shoe when I walk, and a battery powered scooter when I have to walk far (over 75 feet) and long. I have learned to make many adjustments for my travels. I love traveling! International traveling especially! (I always start by emailing the airlines to let them know that I have to travel with a power scooter).

I arrived last June from Holyhead to the Dublin ferry port, and drove through the city with the help of GPS. I had previously bought a used automatic car (1997 Vauxhall Corsa) while in London*. I don’t like to travel with tour groups on buses. I prefer my own schedule, since I need more sleep, rest, and just more personal time to get my days started. We had several places to stay, booked ahead at Airbnb homes all around Ireland. Most of these places were fine or awesome, but a few were not good for polio survivors (stairs to climb).

We drove to Castletown; a busy little town with few parking spaces available close to the castle, but much history! We toured the lovely castle, with a handicapped entrance and mostly-working elevators. I was able to be included with the small tour group, and rode my scooter all the way through the elegant castle. And it was FREE! We enjoyed a hot lunch in the tea-room, and spent the

rest of the day exploring the nearby path that followed the river, and the beautiful hiking meadows.

From Castletown, we next drove through the Ring of Kerry. Lunch was eaten in the car while enjoying a view of the beautiful lake. I tried to walk up the path to see the waterfall, because a scooter could never go up the steep slippery path through the tree roots and rocks. It took a few days to recover from that adventure…back aches and leg cramps. The rest of the trip around the Ring of Kerry was spent in the car.

No trip to Ireland is ever complete without a visit to Doolin and the Cliffs of Moher. We arrived at the cliffs a little too late to enjoy the tourist attractions inside, but the sunset was incredible!

Because there were few people around at that time of day, we almost had the whole place to ourselves!

We enjoyed many conversations with our host family in Buncrana, and had many unanswered questions concerning “Brexit”! Will the border with Northern Ireland remain open? What will change? So, we decided this was our chance to go to Northern Ireland, before “Brexit” could complicate travel. Our first stop, of course, was the city with a complicated name – Derry, Londonderry, or “The Walled City”.

We walked across the Peace Bridge, and stood in awe of the Guildhall with its modern square, where a splash pad might catch pedestrians with a sudden gush of water!

The city was beautiful, but we encountered steep hills in the High Street shopping area. My scooter certainly deserved a recharge after that day’s visit.

3

Aside from a disappointing airbnb, we really enjoyed the sights and attractions of Belfast. It is a beautiful city, with beautiful and enomorous shopping malls (Victoria Mall), a large indoor market (St. George’s Market), and of course, the Titanic Quarter. We walked everywhere!

The visit to the Titanic Museum was totally accommodating for riding a scooter. There were elevators (lifts) on every floor, but they were sometimes difficult to locate in the crowds. However, it was quite ironic that I could not prove that I was handicapped at the ticket office! Using a scooter and carrying my crutches in my arms was not sufficient evidence. They required something in writing, so be forewarned if you are planning a visit. I had to pay admission, but my wife was free, as

my aide! Who can understand? We found the museum to be interesting, and sad. We spent almost all day in and around the museum.

The SS Nomadic was dry-docked at the Titanic Quarter, and accessible for riding a scooter. However there were stairs to the upper decks that were not accessible. Again, my wife took lots of pictures to

share what I couldn’t see for myself.

The gigantic H&W cranes at the shipyard were visible from almost any place in the city of Belfast. Belfast was well worth a visit, and unforgettable!

Time came to start packing our souveniers, and look for packing materials. I try to be resourceful, but my wife sometimes thinks I go a bit

overboard. But free stuff is good stuff!

We drove to Dublin, gave away our car, and started dreaming of our relaxing easy chair at home! McDonald’s is truly around every corner of the world, and in every airport! It’s a cheap meal when you are counting your pennies!

Our granddaughter was thrilled to see us, and model her new dress from Debenhams! We were thrilled to see her too! (And she has a little sister on the way!)”

*Peter Thwaites found the car, in a local advert, that John and Sue used for their trip. It was a real bargain and apparently apart from one of the tyres, which was a little ‘dodgy’, lasted the whole trip. John actually gave it to one of the Irish friends he met on the trip, just before they caught the flight back to the US.

Useful Websites: https://www.polioaustralia.org.au/health-late-effects-of-polio This Australian website has helpful information for PPS. The video of Dr Helen Mackie talking about ‘Best Practice Management of LEop’ (PPS) is interesting and readers may

also want to hear the podcast by Dr Steve de Graaff on ‘Impacts of a Post Polio History’.

https://blog.hurusa.com/8-effective-seated-exercises-for-wheelchair-bound-seniors Some useful exercises, for those in a wheelchair, to build up body strength - but work at your own pace and stop before you become tired, or if anything hurts.

4

To Make You Smile!

What country's capital is growing the fastest?

Ireland - every day it's Dublin!

How many tickles does it take to make an octopus laugh?

Ten tickles

My wife is really mad at the fact that I have no sense of direction.

So I packed up my stuff and right!

Why do seagulls fly over the ocean?

Because if they flew over the bay, we'd call them bagels

What did the janitor say when she jumped out of the closet?

Supplies!

I had a neck brace fitted years ago and I've never looked back since

Which rock group has four guys who can't sing or play instruments? Mount Rushmore!

Disclaimer Unless otherwise stated, the articles in ‘Le Communique' may be reprinted provided that ‘The World-Wide Fellowship of Polio Warriors’ is acknowledged in full. The views expressed in this publication are not necessarily those of ‘The World-Wide Fellowship of Polio Warriors’, and any products, services or treatments described are not necessarily endorsed or recommended.

5

A Message from Peter Thwaites Our charity, as you know, is supporting all polio survivors around the world by directing them to resources that are available, to help to relive the suffering of the symptoms of post-polio syndrome, or the late effects of polio, which can be extremely debilitating with intense pain, extreme fatigue, respiratory problems, and speech and swallowing difficulties as examples. We have many friends in the Philippines living in the neighbourhood where my wife’s parents were living, and a few of them have friends who are polio survivors.

This guy lives locally and is 49 years old living on his own, as he has been shunned by his siblings, a normal course of events if a family member is disabled in any way. He used to live with his mother, but she passed away a few months ago. His nickname is ‘Ayot’ (a term of Filipino origin meaning an unnamed friend) because when he caught polio almost 20 years ago, he lost the use of his right leg, and his ability to talk, so to a stranger he is unable to give his name. He makes his way around the village seeking some sort of employment so that he can purchase rice for the day, hopefully also earning enough to add maybe some fish to add taste to the rice meal. Regrettably, many other Filipinos will employ him for the day, usually gardening or similar hard, hot work, for which they will give him perhaps 50 pesos or so. Equal to about 60 cents US this is hardly a wage, and with no support from the government this must provide food for himself.

Through our charity we provide these polio friends with a box of groceries, and if needed a pair of crutches or canes, etc. But there is so much more that we would like to do, should funds ever permit. Having been told of our friend and neighbour, Ayot, we are providing him with crutches and a box of household and grocery items to show him that he is not alone and ignored. Our aim is to stress to these polio friends that they must endeavour to follow our rule of ‘Conserve to Preserve’ and by providing them with an assistive device they are conserving the muscles of their ‘good’ leg enabling them to continue to get around. So many polio survivors in these third world countries depend too much on their ‘good’ limbs only to lose these through misuse or over-use, forcing them to physically crawl around the neighbourhood through a lack of wheelchairs, etc.

Our work takes us to many third world countries, where, despite many of the governments amazingly denying the existence of any polio survivors within their country, we have found that there is also a need for help with the difficulties of just living, with very little or no income for simple food stuffs, etc.

As a charity we are not able to provide cash grants for these survivors, but as well as supplying various assistive devices, we can as a one off, provide our fellow polio survivor with a selection of household and grocery items, demonstrating that they are not alone and certainly not ignored or neglected.

If this is something that you would like to help us with, we welcome donations ring fenced for this support, enabling us to contact fellow polio survivors in many countries, providing them with a selection of essential goods as a means of demonstrating that we are here and we are doing our best to do what we are able, to make their lives a little more comfortable.

If you would like to offer a donation for this support, you can do so here: https://form.jotform.com/211674454445357

for which we and our fellow polio survivors will be forever grateful.

Thank you. The World-Wide Fellowship of Polio Warriors https://www.poliowarriors.org

6

Finding a Hobby

Birdwatching

You don’t even need to go out of your house to watch birds if you have a garden. If you are not

lucky enough to have a garden, try putting bird food and water out for them and they should arrive

after a day or two when they have noticed it is

there. Here is a link to the RSPB website with

helpful advice for the less mobile birdwatcher, as

well as lots of general information about birds

and bird watching.

https://www.rspb.org.uk/birds-and-

wildlife/wildlife-guides/birdwatching/advice-

for-disabled-birdwatchers/

There are also lots of bird and animal webcams online. Here are some webcams where birds from

around the world can be spotted:

https://www.youtube.com/watch?v=MtGUTs_HgcE

https://www.youtube.com/watch?v=cX-Zq4MWXZI

https://www.youtube.com/watch?v=_pOEBUK1E3I

Play games against your computer

You may have already tried this, but if you don’t have anyone to play your favourite games with you,

why not pit your wits against the computer? There are so many games available online for free, and

you probably have some on your computer that don’t even need the internet - just do a search for

‘games’.

Here is an online’ Scrabble’ game – it is very similar to the board game ‘Scrabble’ and fun to play –

why not take a look?

https://wordscramble.eu/scrabble-online.html

Write a Novel

Not everyone has a novel in them, but if you have ever considered it or are not sure and just need a little help getting started, why not try? Here is a website that may inspire you and has lots of insider tips: https://nationalcentreforwriting.org.uk/free-resources/

P.S. If you have had a book published why not tell other readers of this

newsletter about it?

7

A Thought - from Rev. Florence Lunde

A few Sundays ago in church someone used the phrase “rivers of prayer” and in my mind’s eye I saw prayers of many people floating down the stream. I thought of a movie I had seen called The Jungle. Three young men were in the jungle wanting to go down the river so they built themselves a boat, actually it was more like a raft. At the beginning of their trip, the water was smooth and they were busy taking pictures, relaxing and joking with each other. With no warning the river changed into the rapids. These boys were tossed to and fro, they were at the whim of the raging water. They thrashed about not knowing what to do; their boat not only capsized but was totally destroyed. They were thrown into the rapids and they were flailing their arms as they tried to keep their heads above water, all the time racing downstream. Finally one of them grabbed a rock sticking up out of the water and held on for dear life. One of them went on down the river and was thrown on the beach. The third boy was killed.

To me, the journey of these boys on the river reflects our prayer life. When life is smooth and everything seems to be going our way normally we give “superficial prayers”. What do I mean by that? I mean yes we pray, yes we thank God, yes we praise God, yes we give him the glory but, do we get down on our knees and travail in prayer or is that reserved for the rapids of life? When the boy grabbed the rock and held on for dear life it reminded me of how we should hold on to our rock Christ Jesus always. In the good times, in the bad times and all the in-between times Jesus is our anchor, our rock our place of refuge. He and only he knows the beginning from the end. He is our solid rock and is there in the midst of our trials, just as he was there in the midst of the raging waters. (Matthew 28:20, Hebrews 13:5) The old song says he is as close as the mention of his name. Do not wait for the time that you are in the midst of a raging storm grabbing onto the rock for dear life, continue in prayer always.

Some scriptures to meditate on:

Psalm 145:18 The Lord is near to all who call upon Him, To all who call upon Him in truth.

John 10:10 “The thief comes only to steal and kill and destroy. I came that they may have life and have it abundantly.”

Deuteronomy 28:7 “The Lord will cause your enemies who rise against you to be defeated before you. They shall come out against you one way and flee before you seven ways.”

John 16:33 "I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world."

1 Corinthians. 10:13 “No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it.”

Proverbs 30:7-9 “Two [things] have I required of thee; deny me [them] not before I die: 8 Remove far from me vanity and lies: give me neither poverty nor riches; feed me with food convenient for me: 9 Lest I be full, and deny [thee], and say, Who [is] the LORD? or lest I be poor, and steal, and take the name of my God [in vain]”. Matthew 18:20 "For where two or three are gathered together in My name, I am there in the midst of them."

8

Quiz No. 7 1. What is the most common colour of toilet paper in France?

2. If you dug a hole through the centre of the earth starting from Wellington in New Zealand, which European country would you end up in?

3. The average person does what thirteen times a day?

4. It is illegal in Texas to put what on your neighbour’s Cow?

5. Which bird is nicknamed ‘The Laughing Jackass’?

6. Native to the Caribbean, what sort of animal is the mountain chicken? 7. What nickname was given to Rembrandt's ‘The Night Watch’ after being over-restored in the 1940s? 8. Who invented the word vomit?

9. Which European country has 158 verses to its national anthem? 10. Where was the fortune cookie invented?

Answers to June’s Quiz

1. All the President’s Men 2. Tennessee 3. Krone 4. The French Open (Roland Garros) 5. Netherlands 6. Emperor Hirohito 7. Salvador Dali 8. 508 calories 9. Amazon 10. Don Quixote If you have any items you would like to add to the next Newsletter, please send them to Christine at: newsletter@poliowarriors.org