POST POLIO NETWORK of WA Inc ABN 39 052 898 141

PO Box 257 SUBIACO WA 6904 Phone (08) 9383 9050 Office/Clinic 45A Kirwan St Floreat WA 6014 a/h (08) 9381 1185 Fax (08) 9383 9075

Website: www.upnaway.com/~poliowa Email: poliowa@upnaway.com

poliowa September 2016 VOL 27 No 3

CONTENTS Office News 2

How to take Carnitine Supplement 3

Polio Story: “Sad world we live in!” 4

Carnitine & Diet for Polios 5

20-year carnitine blood tests review 6/7

Case Studies: 1. Jenny, 2. Margaret, 3, Anne 8

Case Studies: 4. Phil, 5. Hugh, 6. Marcia 9

Answers to Polio Questionnaire 10

Laughter the best medicine - Sure-fire Cure 11

AGM Sunday 9 Oct 2pm

Para-Quad Hall 10 Selby St

Shenton Park

Speaker: Sonya Horsman Topic: Highlights from

Sydney Polio Conference

On Friday 2 September, 59 WA recipients received

medals and awards from Hon Kerry Sanderson AC,

Governor of WA. Most were for the recent Queen’s

Birthday Order of Australia Awards but some were for

bravery and military honours. This prestigious Gov.

residence was built in 1864 and the Ballroom added

and opened in 1899. It is a rare occasion to be invited

to this building. Five members of the WA Post Polio

Network accompanied Tessa for this occasion.

GOVERNMENT HOUSE INVESTITURE

WALKWALKWALKWALK----WITHWITHWITHWITH----ME SPONSORSHIP NEEDEDME SPONSORSHIP NEEDEDME SPONSORSHIP NEEDEDME SPONSORSHIP NEEDED Tessa and Jenny need sponsorship for this event to be held at Parliament House Canberra on Thurs 10 Nov. This is a Polio Australia event to raise awareness of Post Polio with our Federal politicians. Donations should be sent to the WA Polio Office with ref “Walk-with-me”. Tax-deductible receipts will be issued to you and the monies forwarded to Polio Australia.

Polio group at the Government House OAM medals presentation with Tessa (right)

Only a few weeks now till the Sydney Polio Conference. There are a few of us going from WA.

POLIO OFFICE CLOSED 19 - 23 Sept and also 9 - 11 November as Jenny and I will be away at 2 polio conferences. So please make sure you get what you need beforehand.

SYDNEY POLIO CONFERENCE 2016

www.cvent.com/events/post-polio-conference

or thru Polio Australia website - just google it.

There are now 62 speakers - 40 Australian, 7 from USA, 3 Denmark, 2 Netherlands, 2 NZ, 6 India, 1 each from Italy, Japan, Spain, UK, Canada. The program, speakers and Abstracts for the Conference have also just been published in the Journal for Rehab Medicine 2016; 48: 731 - 756. You can view all of these on the Polio Australia websites.

AGM at 2 pm Sunday 9 October at Para-Quad In anticipation that people will want to hear the latest from the Sydney Conference, we have booked the hall at PQA (now Spine and Limb Foundation) 10 Selby St Shenton Park, where we met for the 25th Anniversary. ie next to the old Rehab Hospital.

We have asked Committee member Sonya Horsman OT, who is attending the Conference, to speak on the Highlights, followed by afternoon tea. Please bring a plate of food to share. AGM will be short. There will be time to chat afterwards to Sonya and others who attended the Sydney Conference. I hope many of you will make the effort to come and hear Sonya.

Nominations are hereby called for President, Treasurer and 2 Committee members. All present members are willing to continue on the Polio Committee.

Dr NIBLETT Dr John is still stuck in PNG. He had hoped to be home by now. I’m sure when he does get back he will do an article for us on his recent trials and tribulations.

CUSTOMS LETTERS AVAILABLE While we are on travelling - if you are leaving Australia and taking supplements with you, we can issue you with a letter in case you need it, to cover all that you are taking. Others have contacted us with problems they have had from not taking their supplements with them on holiday. Do get a letter & take them with you.

WALK WITH ME - Polio Australia Nov meeting Instead of meeting in Sydney for the annual face-to-face meeting of Polio Australia, it has been decided that this year we will meet in Canberra and visit the Parliamentary politicians. So Jenny and I, the WA representatives on the Board of Polio Australia, will be walking the floors of Parliament on your behalf. This will also be a fundraising event for Polio Australia, which struggles to raise the money needed to run its small office. So please support these efforts for all Australian polios. Tax-deductible donations for this event need to made out to ‘Post Polio’ & sent to WA Polio Office and we will pass the total on at the end.

RAFFLE WINNERS Winners of our last raffle, drawn by EO Shane Yensch from Spine and Limb, were all polio members. 1st Prize of $2000 cash went to Maureen Swinbourn of Seabird, 2nd Prize, the coin-pearl necklace donated by Anastasia Pearl Gallery in Broome went to Edwina Cusworth of Ferndale and 3rd prize, the hand-made quilt to Chuck Lusk of Bayswater.

CHRISTMAS RAFFLE Tickets go out with this newsletter for the next raffle. Cash again for 1st prize. Polio member, Kez St George from Rockingham, has donated one of her paintings from her Art Gallery for 2nd prize and the 3rd is a bathroom towels and lotions set from Asbury Park, the shop next door to us. If you want tickets and didn’t get any or want more just ring the office.

MANGANESE TABLETS We now have plenty of manganese available here at the Polio Office. Any in your local shops or on-line is very low dose and not worth taking. Ours are the manganese chelate 200 mg (90 tabs for $25). We also have manganese powder 100G $50, 200G $90. Postage up to 300G or 7 bottles of tabs is $10.

CARNITINE This newsletter has concentrated on carnitine and the blood levels we have been doing thru PMH, now thru PathWest at QEII. There may be new info in the articles that you haven’t heard before or it may be a refresher. But this is our chance to tell the rest of the world what we are doing here for polio in WA. Case study names used with permission. All the best. Tessa Jupp RN

"Kindness is the language the blind can see

and the deaf can hear." - Mark Twain

More people are asking to pay their bills to Poliowa

electronically as they no longer have cheque books - so here

are the details for you if you wish to pay this way.

So that we can be sure to match up payments against names,

please ensure your name and invoice number or reason for

payment eg Donation, is recorded on the payment advice we

will get on our bank statement so that we can mark you off

or issue you with a receipt for tax purposes.

For those wanting to do Internet Banking (we can’t accept

Credit cards) or to go into the bank personally to Bankwest

BANK Post Polio Network of WA Inc

DETAILS BSB 306 050

a/c 562 111 9

2

3

How is your get-up-and-go?

Are you accused of being

lazy? A wet blanket!

Fatigue is the most common complaint for post polio.

Running out of energy is

what stops us and pulls us

down - lack of endurance.

Would you like to feel like this?

Full of energy again.

Able to do things!

Carnitine can give you back your energy.

Feel the difference when you

get the levels right.

TO FIND OPTIMAL CARNITINE DOSE (trial-and-error method)

1. Start with 500mg (1 flat 1ml scoop) in an inch or so of water before breakfast ie when you first get up.

2. Increase dose by 500mg every 2-3 days so that you realise when your bowels are getting a bit loose, before you get diarrhoea.

3. Then go back by the last increase that makes you loose, to get your optimal dose. ie feel good but not loose. You may need half scoops to get it right.

4. Any diarrhoea from carnitine overload is usually gone by afternoon, whereas if from magnesium or Vit C will be on and off all day.

5. If still tired, try a bit more after lunch to top-up.

6. Most polios need between 2 to 6 scoops/day to feel more energised. May need more. Can work in 20 minutes when you are up to your optimal dose.

QUALITY of CARNITINE

There is a lot more carnitine available in shops and

on-line these days but the cheaper versions and taking

acetyl-carnitine, are not going to give the best results

for our muscles. Fine for healthy sportsmen, but we

are taking it for medical purposes.

The carnitine available from Poliowa, sourced for us

at Mt Evelyn Compounding Pharmacy in Victoria, is

pure L-carnitine that has had an extra grinding under vacuum process they do to improve the quality so that

it works better and so we don’t need to take as much.

Carnitine 50G powder $62 Carnitine 100G powder $110 Carnitine 200G powder $200 Carnitine 250mg capsules (100) $65

by Tessa Jupp RN OAM Polio Clinic West Australia

3 Options to taking Carnitine (as discovered by our study)

All of the options resulted in the polio person

gaining more energy and endurance.

Option 1. (most people) Take once a day, carnitine capsules or powder by scoopful in a little water, before breakfast or soon

after getting out of bed. (use ¼ teasp if no scoop)

Option 2. (if tired later in day) Take twice a day. Take main dose as above then another 1-2 scoops after lunch, around 2pm-4pm.

Option 3. (if other 2 don’t work) Put dose into a 500ml bottle of water or juice and

drink a few mouthfuls periodically over the morning or day as you feel you need more energy.

Useful if early full dose gives diarrhoea but you are

still tired and need extra carnitine for energy.

Make Carnitine work for you!

We need to reach a certain level of carnitine in the

blood that makes us feel “alive”, back to normal. For polio people this may need to be higher than

for others because the muscles we have left are

working harder just to do normal things.

So that first morning dose needs to get us up to

that point. Protein foods for lunch and tea, particularly red meats or avocado, help to raise those levels again as the activities of the day

deplete and use, available carnitine in our blood.

It is sensible to take a bit more carnitine

immediately before an activity that we know will make us tired; like shopping, going out, pool or

gym exercising (or walking), playing golf etc.

A bit more enables occasional nights-out or to deal with an emergency. But don’t overdo it.

4

Clive was cleaning the car out in our garage.

I was in the house, heard a bang, went into the

garage to investigate and was horrified to find Clive

on the floor behind the car, bleeding from his head.

I noticed a young chap standing just outside the

garage and glancing at him briefly as I limped over

in my usual polio walking-with-caliper fashion, I

presumed he had seen Clive fall as he walked past

and had stopped to help.

I had reached where Clive was lying and was bent

over, trying to keep him laying down and to not try

to get up, as I could see he had injured his head,

when I realised this fella wasn't offering any help

at all, nor had he spoken a word.

As I straightened up to face him I saw he was

raising his hand with a golfing iron in it. In horror,

I pleaded "Don't do that!” but before I could get

out “PLEASE don't do this. " he had got both

hands on the golf stick and with all his might

whacked Clive over the head again.

I watched in horror at what he was doing to my

husband. Luckily my neighbour, was just then

opening his garage door. Immediately that this

“baddie” heard the neighbour’s garage door start to

open and me starting to scream his name for help,

the “bad guy” ran off down the street.

My neighbour who is a doctor, quickly took charge

of the situation, calling an ambulance and came to

my assistance as I stood helpless beside Clive. His

head was a mess from the blows, blood everywhere.

While we were waiting for the ambulance to come

my neighbour said to me "We are losing him Joan.”

I said “Yes. I realise that.” but kept saying over

and over "Stay with us Clive. Stay with us."

Clive was only unconscious for a very short time

before the ambulance turned up. He was taken

away and eventually we ended up at the Trauma

Centre at Royal Perth. He had extensive multiple

depressed skull fractures and brain haemorrhage.

But he is amazingly sharp still - thank God, and

has not lost his sense of humour, despite having

left-sided weakness from his head injury.

Clive was transferred to Fiona Stanley for rehab

then back to RPH for surgery to clean out, drain

and put a titanium plate over the worst of his head

injuries where the skull was so badly fragmented

and now has developed an infection. It was decided

not to do the titanium plate and now it is back to

FSH for more rehab. Please keep him in your

prayers. Joan

This is a story that has been unfolding by email to us at the Polio Office. It began at the end of July. Some of the office volunteers had seen a news item on this brutal, nonsensical bashing on the evening TV news but we hadn’t realised it had happened to one of our own.

Joan and Clive have been part of our Polio Network from our very first preparatory meeting in June 1989. Joan had polio in 1948 at the age of 18 months in Yorkshire, England. She has always needed a caliper and remembers being teased at school, although she also remembers being helped.

They came to WA in 1967 and brought up their family here. Clive worked as a deep sea diver and was often away on diving jobs. Their fairly large property in the hills at Roleystone made walking difficult for Joan especially on uneven gravel ground.

Joan had been able to attend the very first meeting on the Late Effects of Polio that was held in Bunbury. She brought paperwork back to Perth that helped in setting up our Post Polio Network a few months later at Para-Quad in Shenton Park.

Joan and Clive attended many of the meetings in the early days of the Network and helped with our initial fundraising events. Joan arranged for Brenda and I to be able to conduct a community Post Polio Awareness meeting at Armadale Hospital in 1990, with publicity in the local papers resulting in our reaching out to more polios in that area.

Joan was also instrumental in us gaining knowledge of some of the more unusual problems that polios can encounter. Early on she brought to our notice that certain blood pressure tablets can cause an annoying persistent cough that was not an infection or poor respiratory function. This resolved when her BP medication was changed.

The stress fracture in her foot made us aware of how easy it is to fracture polio weakened bones and that not all fractures are visible on x-ray; that a nuclear scan may be needed to pick up the cause of continuing bone pain and complete immobilisation the answer to enable it to heal.

Joan still remembers her very first visit to Orthotics at RPH Shenton Park in 1979. She is grateful she has been able to attended there each year since, for supply of her free caliper and surgical shoes, and for her annual reviews. She has continued to attend Orthotics after their 2014 move to the new Fiona Stanley Rehab Hospital, now a bit closer for her.

Since Clive retired they have done some travelling around Australia and were looking forward to a quiet retirement; time with family and grandchildren.

Please keep Clive and Joan in your prayers at this very difficult time for them.

Tessa

5

What is carnitine? - It is part of the proteins of our foods. Protein is made up of amino acids and carnitine is one of

them. The role of carnitine is to transport the long-chain

fatty acids in our foods, across the inside of our body cells,

the mitochondria, to produce energy, thru the Krebs cycle,

for our muscles (and brain) to work.

Some parent must have known how important this

is for muscles because there is actually a children’s

book written about a “weak, floppy” baby who got strong, after being fed avocado! In fact there

is a condition called “floppy baby syndrome” and

the treatment is to give carnitine.

Carnitine is so safe to take that it has been added to soy baby formula since 1985 because it is absent in soya and

babies allergic to milk, using soya milk became floppy.

Carnitine occurs naturally in breastmilk and other milks as

well as many other protein foods in varying quantities.

Carnitine Content in Foods Chart (mg/100g)

ref: Carnipure website

There are other sites with slight variations on these figures.

A 2013 Polish study gives kangaroo as 637mg, which I

would believe, because kangaroo is a much richer meat and I find I don’t need to eat as much of it to feel satisfied.

Another factor that needs to be taken into consideration is

how the food is cooked. Roast beef gives more carnitine than veal steak (younger meat has less also) and

mince exposes more surfaces to leach carnitine

so use the fluid it is cooked in. Boiling in water would also leach some of the carnitine protein

out into the water. Fine if the water is part of the

meal, as in stews and casseroles or soups but not

if thrown away. The same for the water we boil

our vegetables in. It is full of liquified minerals,

so is good to drink or for soup, gravy, sauces.

Processing affects corned beef or ham content.

The plates of food opposite represent a visual interpretation I have done, on graphs from other

research on the amount of protein, fats and carbohydrates needed per meal depending on the

blood group. We do this instinctively as well if we disregard the health data we are loaded with

these days. However polio people will need a

bit more meat to get needed extra carnitine.

If you look at the food chart again, you will see that the

second column does not give us much carnitine in our diet.

Chicken, fish, milk and dairy products are poor carnitine sources, and plant foods are pretty negligible. Avocado is the only exception.

A naturally fatty food, avocado is a known good source of carnitine yet does not generally score well on charts. Carnipure only gives it 0.4mg but our

experience rates it much higher, so I am rating it at

100mg. We have had polio members able to replace

their carnitine dose with a couple of avocados a day

when their avocado tree was in season, and then take

carnitine supplement for the rest of the year.

Our bodies can make 25% of our carnitine needs. The other 75% we should be getting from our diet.

For polios needing anywhere from 500mg - 3,000mg daily,

we would need to eat half a kilo of steak to get 500g of carnitine or 6 kg of steak to get 3,000mg. Clearly impossible! We do absorb more from foods than

supplements but it is still too much to eat for anyone!

But even if we are taking supplemental carnitine we still

need the fatty acids in protein foods for the carnitine to

transport into the cell - so we still need to eat protein foods.

What we eat during the day helps to boost our muscle

reserves and we lose it overnight while we sleep. So we

need carnitine when we get up, maybe a top-up after

lunch, and we need some protein for every meal.

Meal Suggestions Breakfast: eggs, bacon, rissoles, fish patties, lamb’s fry. If must have cereal, have porridge with egg whipped in.

Lunch: meat, chicken or fish with salad, soups with meaty chunks, home-made hamburger or steak sandwich & salads.

Dinner: small plate of soup, any variety or entrée. Meat, chicken or fish with cooked veg (white, red/orange/

yellow & green). Red meat at least 4-5 times a week! Pudding eg custard, rice, sago with added egg whipped in.

by Tessa Jupp RN

kangaroo 170 chicken 8.0

lamb 160 milk, cottage cheese 4.0

roast beef 140 yoghurt 4.0

veal steak 105 fish 3.7

avocado 100 ice-cream, cream 3.5

mince beef 50 mushroom 2.6

sausages 39 butter 1.1

corned beef 32 eggs 0.8

pork 24 nuts 0.5

rabbit 24 bread, rice, corn 0.4

ham 12 potato 0.2

Plate for ‘A1’ Blood Group

31% Australian population

Plate for ‘A2’ Blood Group

7% Australian population

Plate for ‘B’ blood group

9% Australian population

Plate for O Blood Group

49% Australian population

Plate for ‘A1 B’ blood Group

3.8% Australian population

Plate for ’A2 B’ Blood Group

0.2% Australian population

6

I thought, why should our WA polios miss out on the

Sydney Conference, so here are some of the keypoints

from my comprehensive presentation — for everyone.

My talk is about Carnitine blood levels that we have been doing here in WA since 1996. What these blood

tests reveal is that generally, although they may be within

the accepted range for “normal” people, we have found

that “polio people” need higher levels. And how do we

know? The outcome is that when these levels are higher, the fatigue is less and endurance is greater.

When I first heard a tape by Dr Richard Kunin from a

1994 Canadian Conference I was struck with the similarity

of carnitine deficiency symptoms and those for post polio.

Look at the chart opposite and see the similarities.

I asked 6 of our polios to try some carnitine I found and 5

improved. In 1996 we did a small (21 polios) double-

blind trial which included blood levels. From there we

decided to continue blood levels as part of our clinical

assessment of carnitine-for-fatigue for our polio clinic.

The main message is - GO BY HOW YOU FEEL! Your body tells you. If you are thinking “What is wrong? I am

so tired.” and other causes have been ruled out, then your

carnitine blood level, whatever it is, may be too low for

you. If you feel better at a higher level, then that is where

you need to be. Take too much - you get diarrhoea. Try it!

EAT MORE RED MEAT - and take carnitine!

I found there were common ways polio people displayed

lack of having enough carnitine. See the body postures

below - standing with stooped, rounded shoulders; not able to stay sitting up straight; hands on hips because

“your back is killing you”; running out of energy feelings.

Our study includes records of 1600 carnitine tests done thru’ our Polio Clinic over the last 20 years at the Princess

Margaret Children’s Hospital in Perth. More than 1000 of

the tests are on polio survivors. The others are on children

of polios who are fatigued or others with Chronic Fatigue,

cancer or other diseases who have sought our help. Our

records include 570 polio survivors, each with varying numbers of carnitine tests. Most respond to carnitine.

Our survey shows there is no predictor of the dose needed.

We are all individual. Some manage with less carnitine

supplement. Others need a lot. The dose we each need

varies, as do the blood levels. Do more, you need more!

The case studies on the people above are on pages 8 & 9.

They have all given permission to use their names and

tell their stories. We all need levels above 45– 50umol/L or more. I don’t manage below 60 and feel great around

76. Others may get diarrhoea at that level, or may need

to spread the dose out thru the day, rather than take it all

in one hit in the morning, as I can. We need to work out

the method of taking extra carnitine to get the results we

need for our polio muscles to work as well as possible.

The Path Lab gives us free carnitine and total carnitine

readings. Total includes carnitine that has been used,

free is what is still available to be used. So the difference

between the 2 levels is the acyl or used amount. If we

divide the acyl by the total as a percentage, we see how

much we are using out of what we had. Good usage is

around 25%. If the percentage is too high ie getting up towards 50%, we could run very low within a day or so

and that wouldn’t be good. Low - we are not using much,

so energy will be low or is a problem getting it through.

Post Polio Symptoms Carnitine Deficiency

Fatigue Fatigue

Muscle weakness Muscle weakness

Muscle/joint pain Muscle pain

Lack of endurance Exercise intolerance

(and for some) (and for some)

Swallowing problems Gastric Reflux

Breathing problems Shortness of breath

Sleeping problems Poor muscle tone

Cold intolerance Poor posture

Increased CK (measures muscle wastage)

Increased CK (measures muscle wastage)

by Tessa Jupp RN

Carnitine Insufficiency Indicators

0 20 40 60 80 100

Normal range 30 –60

sick range <45 well range >45

Reading blood levels

umol/L 20 24 32 48 56 69 86 120

Anne - 20 up to 32 so still needs more carnitine to >45

Phil - 24 up to 69 then back to 58 - so needs more now

Jenny - 48 up to 56 - then needing more again now

Margaret - 57 up to 86, back to 57 when stopped taking

Hugh - 36 up to 50 before - now up to 120 & feels great

Serum Carnitine Levels

7

So we either are not getting enough carnitine and/or fatty

acids (in protein foods) via the foods we are eating, to

produce energy, or there is a problem with the carnitine

shuttle through the mitochondria of the muscle cell.

Taking more carnitine seems to enable more to get thru.

This diagram above is the easy version to explain

that fatty acids (Acyl-CoA) are split by carnitine

enzymes to join the acyl to the carntitine to

transport thru the cell membrane then unload and

join back with the CoA to burn for energy in the

power house ie Krebs Cycle, to produce ATP.

Fatty acids give us 129 ATP (energy units) with

carnitine which is needed for Type 1 muscles for

endurance. Glucose from plant foods using insulin

only gives us 36 ATP - the Type 2 muscle fuel.

The graphs in the diagram opposite shows the

changes to the energy available, when the nerve

supplying the muscle is changed, which happens

with the nerve “sprouting” to reconnect orphaned

muscles to enable recovery after polio. Muscle

biopsy work done on polios by Prof Kristian Borg MD PhD from Sweden suggests a

dominance of Type 1 muscles, but that they

don’t work as well as usual Type 1 muscles

and are larger. So the bottom picture in the

diagram below shows what happens to a

Type 2 muscle when you change the nerve

supplying the muscle, to a Type 1 nerve.

This changes the fuel needed for the muscle,

to the fatty acid-carnitine cycle. Coupled

with the loss of carnitine storage space due

to loss of muscle as a result of polio, this

means that polio survivors will need more carnitine to be readily available. ie a need for higher blood levels of carnitine.

So more polio muscles run on carnitine fuels but there is less storage tanks left. Thus we need more ships and barges to keep the fires burning to produce energy. CARNITINE BLOOD LEVELS

Our WA research has shown that the carnitine levels of our polios are dropping steadily with time as polios age.

We have records over twenty years for some of our polios

that record this. An Italian study published in 2007 also

shows that carnitine levels drop generally as we age and

recommends supplemental carnitine for the elderly. We can show also that polio people are managing their

fatigue, energy levels, endurance and muscle pain, much

better when their blood levels of carnitine are above 45

and many need to have levels of 60 - 80 to manage.

Our WA polio people regularly taking carnitine, are also

reporting a slowing of the rate of increasing muscle

weakness and improvement in muscle strength and

endurance, when taking adequate carnitine supplement.

So the interpretation of blood levels helps me to advise people on need to change their dose or how they are taking

carnitine. But if people listen to their bodies, use trial-and-error and bowel tolerance, and successful outcomes,

they can manage their own improvement on carnitine.

Sprouted re-inervated muscles change from Type 2 to an abnormal Type 1 muscle. This also changes the optimal fuel supply choice by the muscle to the carnitine-protein cycle instead of the insulin-carbohydrate cycle. The contraction graph is now better than a Type 2 muscle but not quite as good as a Type 1 muscle.

Slow twitch fibre innervation

Slow twitch fibre re-innervation after polio

Fast twitch fibre innervation

Fast twitch fibre lost due to polio

Formerly fast twitch now slow

slow fast

carnitine transporter for energy

carnitine is the barge to transport the acyl-CoA(fatty acids) into the energy burner in the muscle cell

acyl-carnitine

Acyl-CoA

mitochondria

of muscle cell

ref: “Human Physiology” Moffet D, St Louis USA 1993 p311

ENERGY

FOOD SOURCE

muscle

mitochondria Krebs Cycle

fatty tissue stores

blood stream

meat

8

Case Study 1 Jenny Jones Polio - January 1961, aged 5 Hospitalised 8 weeks. Started

school June 1961 for half days

only, transported in pram, piggy-

backed home at lunch time by

brothers as too tired to stay at

school all day, for some years of primary school.

Attended full days by High School, limited sport.

Worked as a teacher, married, had 3 kids, played

tennis, golf, worked till age 45 then too fatigued.

1990 -ie aged 45, family stress – mother died of cancer, husband sick, family ate vegetarian diet.

Told by GP had Chronic Fatigue. Spent a lot of time

in bed, too tired to do much. Worked a few hours

when felt up to it.

2004 – contacted Poliowa thru friend. Reviewed by Tessa at Polio Clinic WA. Had carnitine blood test

in January 2004. Started on carnitine – more energy

within weeks. Able to go out with friends again.

Changed diet to include a lot more red meat. Rest of

family improved energy levels with red meat too!

Took other vitamins etc eg magnesium, manganese.

Felt good – didn’t do follow-up carnitine test.

2011 - seen by Jega at Late Effects Clinic – heel raise test – 0 for left leg; couldn’t do with polio foot.

Jega sent to OT for treatment. Saw Sonya Horsman

at Health Central in Mt Hawthorn. Sonya has used

heel raises to assess Jenny’s progress.

2012 - heel raises achieved with polio foot – 4

2013 - 2015. After OT treatments, now heel raises achieved were around 9-10 consistently for 3 years.

2016 – increased carnitine dose. Heel raises now 14. Sonya amazed at difference more carnitine has made.

The first test 2004 was when really fatigued and just

after commenced carnitine. Dose worked out by trial

and error (ie to bowel tolerance) had been 5-6 scoops

(ie 2.5G - 3G) Somehow Jenny had stopped taking as

much. Had tried cheaper sources of carnitine but had

to take a lot more as quality poor; then when back on

Poliowa-sourced carnitine, had dropped to 1 scoop.

When talking to Tessa in 2016, Jenny mentioned she

was struggling with energy, needing to take a nap.

Had been making excuses to herself that it was due to

looking after grandchildren. Tessa suggested

doubling dose to 2 scoops and have a blood test.

Jenny felt better and Sonya noticed heel raises

improved to 14. Tessa suggested extra 2 scoops after

lunch and Jenny tried heel raise 1 hour later - Jenny

was very surprised & pleased to achieve 19 this time.

The heel raise endurance test on her polio leg has

been a good way to measure her progress.

Date Free Total Acyl Acyl/Total

28/1/2004 41 47 6 13%

14/6/2016 56 69 13 19%

1. polio foot (left) flat, 0 in 2011 2. polio foot heel raise - 19 in 2016 3. Non-polio foot (right) heel raise

Case Study 2 - Margaret Hannan Polio - 1951 aged 18 months in NZ. (came to WA 1980)

Not hospitalised. Her neck, back and legs were affected by

polio but with no residual paralysis, only weakness.

Worked as a book keeper. Had to stop work and go onto a

Disability Pension. Problems with fatigue, increasing

weakness, pain. Initial free level appears high but fatigued.

On carnitine, levels high (86) but no diarrhoea so needing it

and feeling better. When forgot to take, levels back to 57.

Case Study 3 - Anne Polio - 1953 aged 7 in NSW. Nursed at home with very

high fever, no paralysis. Recovered. Levels low in

2002. Stopped carnitine. Now having more problems

with weakness in arms and pain in legs, backache and

fatigue. Was working, now retired. Fatigued, wanted to

try carnitine again. Initial 2016 pre-carnitine level very

low (20). On 1 scoop, still only up to 32 and percentage

very high (44%). Dose has been increased more and she

is feeling better. Further blood test review is needed.

Date Free Total Acyl Acyl/Total

20/06/2002 25 29 4 14%

24/06/2016 20 32 12 37%

22/07/2016 32 57 25 44%

Date Free Total Acyl Acyl/Total

14/09/2006 57 62 5 8%

23/10/2006 86 97 11 11%

12/03/2007 57 66 9 14%

9

Case Study 4 - Phil Slattery Polio - January 1951 age 6 months

Milestones had been normal. Mother noticed lethargic

and right arm just hanging, not able to move. Mother

came in every day to breastfeed.

Was admitted to IDB Shenton

Park. Right shoulder and legs

affected. Hospitalised for 2

months.

Late at walking. Always last in

school races as couldn’t run fast.

Couldn’t kick a football. His

right arm remains weak and his

legs have some weakness.

Phil chose work that didn’t require a lot of energy

expenditure –office work and driving, before teaching

English in Japan for 10 years. Married, he returned to

WA. Got a job driving a delivery truck but in his

early 50s was struggling and considering applying for

Disability Pension. Felt like an old man. Couldn’t

bend to put on socks. Totally exhausted every day.

Phil contacted Tessa at Poliowa and decided to try

carnitine. Within 2 weeks he felt a different person.

Was amazed that he was now able to do things he

hadn’t been able to do for the last few years.

Phil changed jobs to ones that were less strenuous.

Eventually got a full time position similar to an

orderly at Hollywood Hospital. Now at Joondalup

Hospital as closer to home, so less travel. Transferred

to Sterilising Dept, now doing perfect job - instrument

tracking and still working full-time at 66.

First reading was 2 weeks after Phil started carnitine.

Although the levels look reasonable, he was fatigued

still, the acyl level was only 2 and 4%. This meant

that he was not using much of what he had available

and this was reflected in the very low percentage as

well. He took more and felt better but later dropped

back to 1 scoop of carnitine (500mg) when he had

changed to a less strenuous job. It was only when he

volunteered to help Tessa move the polio office from

Perry Lakes to the present site that he mentioned he

was a bit tired. Tessa arranged another blood test and

suggested increasing his dose to 2 scoops (1000mg).

Alarmed at such a low reading (24) this time, on

further questioning, Tessa found that Phil had been in

a hurry to get to work so got the blood taken before

taking any carnitine that morning. So what was

actually recorded was how low Phil was getting each

morning before taking his daily dose. A repeat level

some months later on his increased dose showed a

great improvement and Phil was feeling much better.

Phil agreed to another test now, 9 years later, and they

have dropped a bit. This is reflecting that he should

reconsider his dose again. He admitted to being a bit

tired and that when he doesn’t take his carnitine for a

couple of days he becomes lethargic, moving around

is more difficult and his endurance is sadly lacking.

He says he wouldn’t be without carnitine and will try

another 1 - 2 scoops after lunch as a top-up to see if he

manages better. He is still enjoying his work and they

don’t want him to retire. He feels valued and lucky.

Date Free Total Acyl Acyl/Total

15/08/2000 48 50 2 4%

19/01/2007 24 26 2 8%

02/05/2007 69 82 13 16%

21/06/2016 58 73 15 21%

Case Studies 5 & 6 - Hugh and Marcia Walker Husband and wife. Hugh had polio twice, 1949 aged

12 and again at 15 in 1952. He lived in NSW, was not

hospitalised and the only affect was to neck and back.

Hugh considered he recovered well with no residuals.

Marcia caught polio from the polio vaccine in 1957

aged 15. She lived in Canada, recovered with no

obvious affects. Married Hugh, moved to WA 1970.

Both had noticed some increasing weakness and pain

in 1998 and wanted to try carnitine. The 1998

readings were before carnitine and in 1999, Hugh was

on 3.5 scoops (1750mg) and Marcia 1.5 scoops

(750mg). Both eating a similar healthy diet, varied

readings and taking different doses to bowel tolerance.

Marcia sadly died in 2015. Hugh is now doing well

on 7 scoops (3500mg) and despite his high readings

does not have any signs of overdose ie diarrhoea, so

obviously needs that amount. Feels absolutely fine on

7 scps and notices he is not as good if he misses a day.

Hugh is going strong and 80 shortly. Still working

part-time as an accountant and still able to travel.

Recently been back to visit relatives in Canada & to

Qld. No way would he go without his daily carnitine.

Date Free Total Acyl Acyl/Total

Hugh

12/11/1998 36 43 7 16%

26/03/1999 50 55 5 9%

07/06/2016 120 167 47 28%

Marcia

12/11/1998 30 47 17 36%

26/03/1999 36 47 11 23%

10

The first section is your polio history. This is important because it gives the background to potential problems you

might be having now. Over the years, one significant

thing I keep seeing is, people who had polio before the

main epidemics, do not seem to have the same polio

deterioration problems as others do now. The main factor

that I have identified, is - the more people were pushed to

recover then, the more problems they are having now.

People who were left to get over polio at their own pace,

and this often applied to those living in country areas and

other who were not hospitalised, are doing better now.

The rest of the questionnaire looks at your present health. The body figures gives you a visual area to put your pain,

weakness etc. (Sorry, some of the words slipped when re-

printing - fatigue should be the last one and the others go

up slightly ie small circles for pain. The same with the

address line getting left off on the front page.)

Snoring and restless sleeping questions are to identify increasing numbers of polios who may need sleep studies.

If you are having problems getting to sleep, zinc is often the answer - take half an hour before going to bed and see

my articles on sleep in the December 2015 newsletter.

Muscles that can’t relax properly ie cramps, restless legs, twitches, hiccups, headaches, knotted or aching

muscle - all usually ressolve with extra magnesium chelate. Sometimes the answer is too much calcium, from

taking calcium tablets or even just too much in the way of

dairy foods eg cheese, yoghurt, icecream. Easy fix - avoid.

Stiffness, twinges around joints and balance problems

can be fixed with extra manganese. This applies to carpal tunnel, frozen shoulder, torn or pulled tendons too.

Only source of 200mg Manganese chelate is Polio Office.

Arthritic-type problems can be helped with a variety of

common old-household remedies like gelatine in hot

drinks, borax licked off fingers, fish oil, Vitamin B6 & C.

Fractures - take the pain out of a fracture within 48 hours

and improve healing by taking extra borax and magnesium together, twice a day. It does work.

Bursitis, Spurs and Shingles all respond well to B12 injections. The quicker the B12 levels are raised the quicker you get better - but don’t expect your doctor to

know this or to agree to give you enough B12. I give a

double B12 injection (ie 2,000mcg) every 2 days for a

couple of weeks until ressolved. One recent very bad case

of shingles needed this amount daily for several weeks.

The pain is lessened within a few days and new blisters

stop erupting. You don’t need a script for B12 injections.

B12 protects and repairs the myelin sheath of the nerve,

which is attacked by the Shingles virsus (ie chicken pox

virus). See diagram opposite. B12 tablets not enough.

Fatigue - major complaint for post polio - and commonly

solved with taking extra carnitine as I have explained in previous pages. Other things can also cause fatigue and

may need to be investigated. Next to check would be

thyroid. Although the doctor will want to give you thyroxine tablets, it is worthwhile trying painting with

iodine tincture to see if this helps. We have oral Lugol’s drops available here as well. If the paint dissappears

within 2 - 8 hours you are really low and need drops.

Getting your iodine levels up is important even if you are

taking thyroxine, because with low iodine you are at more

risk of breast and ovarian (or prostate) cancers.

Other causes of fatigue can include anaemias from low

B12, iron or folates. Another is low potassium; we lose our reserve energy, feel drained, light-headed and may

have palpitations. Your GP can test for all of these.

Pain - we need to identify the cause to work out the solution. Nerve pain can be sharp, stabbing, electric-shock

type or numb, pins-and-needles, loss of sensation. B6

would be the starting point. If the B6 tablet tastes sweet or no taste, you need some: if it tastes really YUK - you

don’t need it! Low B1 can also cause these problems. More likely if you are diabetic but can also be due to polio.

Falls - we need to be even more careful not to fall as polio bones are more likely to be thin and osteporotic due to not

growing properly from the time you had polio but also

because of the reduced muscle pull from polio-weakened

muscles. Bone density is maintained by weight-bearing exercise and muscle pull. Both of these can be reduced

due to polio and LEoP. Vitamin K2 can help to take

excess calcium out of areas it shouldn’t be - like joints

(arthritis) and blood vessels (plaque) and put the calcium

back into the bone. So polios should probably all be

taking Vit K and Vit D to protect their bones. Borax and manganese both help cement bone cells into bone too.

Manganese helps you to know “where you are in space” so is important for balance too. Use sticks and frames also.

by Tessa Jupp RN

If you haven’t already filled out the pull-out Questionnaire in the middle of the last newsletter, and returned

it to me please find it and do so ASAP. We need your most recent info to up-date our records and statistics for

WA polios. If you need a copy for any reason at any time you can always get a photocopy back from us. This might

be useful later for medical assessments or Centrelink applications to show any deterioration over time.

If you still have the September 2013 newsletter you can go back and look up the 2 f ull pages I wrote last time on how

to fix the problems you have ticked in the Polio Questionnaire. If not, it is available on our website - see web address on front page. There are some good articles you might like to re-visit in it as well. Especially the Sandpiper story.

11

Dearest Daddy, I am coming home to get married soon, so get out your cheque book. I'm in love with a boy who is far away from me. As you know, I am in Australia and he lives in Scotland. We met on a dating website, became friends on Facebook, had long chats on Whatsapp, he proposed to me on Skype and now we've had two months of relationship through Viber. My beloved and favourite Dad, I need your blessing, good wishes and a really big wedding."

Lots of love and thanks. Your favourite daughter, Lilly

My dear Lilly, Like Wow! Really? Cool! Whatever.... I suggest you two get married on Twitter, have fun on Tango, buy your kids on Amazon, and pay for it all through PayPal. And when you get fed up with this new husband, sell him on eBay or Gumtree. Dad

PADDY & HIGH FINANCES

Paddy bought a camel from a farmer for $100.

The farmer agreed to deliver the camel the next day.

In the morning he drove up and said, ‘Sorry son, but I

have some bad news. The camel’s died.’

Paddy replied, ‘Well just give me my money back then.’

The farmer said, ‘Can’t do that. I’ve already spent it.’

Paddy said, ‘OK then, just bring me the dead camel.’

The farmer asked, ‘What are you going to do with him?’

Paddy said, ‘I’m going to raffle him off.’

The farmer said, ‘You can’t raffle a dead camel!’

Paddy said, ‘Sure I can. Watch me. I just won’t tell

anybody he’s dead.’

A month later, the farmer met up with Paddy and asked,

‘What happened with that dead camel?’

Paddy said, ‘I raffled him off. I sold 500

tickets at $2 each and made a profit

of $898′

The farmer said, ‘Didn’t anyone complain?’

Paddy said, ‘Just the guy who won.

So I gave him his $2 back.’

Paddy works for the Commonwealth Bank now.

SURE-FIRE CURE After a tiring day, a commuter settles down in his seat and closes his eyes. As the train rolls out of the station, a woman sitting next to him pulls out her mobile phone.

She starts talking in a loud voice: "Hi sweetie. It's Sue. I'm on the train. Yes, I know it's the six- thirty and not the four-thirty, but I had a long meeting. No, honey, not with that Kevin from the accounting office. It was with the boss. No sweetheart, you're the only one in my life. Yes, I'm sure, cross my heart!"

Fifteen minutes later, she is still talking loudly and the man sitting next to her has had enough.

Leaning over and he says into the phone, "Sue, hang up the phone and come back to bed."

Sue doesn't use her mobile in public any more.

Would you mind talking for a while? I forgot my mobile.

It appears that our diet is almost 100% cholesterol. Apparently that is very,very, very bad - according to this book.

POST POLIO MEMBERSHIP is by Donation to the Network (due 30 June each year)

All Donations to Post Polio Network are Tax-deductible

We need to set up a fund to use for an assistant for Tessa to help run the Polio Office so she can do more clinical appointments to assist polios and their families and do more clinical research.

I would like to pay a donation membership to the Post Polio Network of WA

suggested PPNWA Membership Donation $20 or more $.......... Pensioner Membership Donation $10 or more $..........

I would like to also pay a Donation for a PA to assist Tessa $..........

Total amount enclosed $............ (receipt in next newsletter)

Name ________________________________________

Address ___________________________________ email address __________________

If undelivered return to:

Post Polio Network of WA Inc. SURFACE Postage

PO Box 257 MAIL Paid

Subiaco Australia

Western Australia 6904 Print Post Approved PP60760310018

Lis

sad

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45A Perry Lakes Stadium

No right turn from Selby into Kirwan

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St

12

Bus Route No 28

to Perth