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Alerts

This is a page of links to several diverse alerts which have been saved as PDFs, on topics ranging from anaesthetics, cardiac medications, and a medical alert card.

Anaesthetics and polio.

Anesthesia Concerns for the Polio Survivor.

Beta-blockers and Carnitine – post polio.

Bruno on Cholesterol.

Deadly Pain medications.

Dental and anaesthetic cautions – Bruno.

Drug and Exercise Cautions.

Ezetrol & Statin Warning.

Medical Alert Card.

Medications post polio – Dr Susan Perlman.

Polio Survivors as patients.

Fatigue

Have you ever felt like this?

This is a word picture of what it feels like to have to deal with the fatigue of post polio. This is what it is like for 71% of Australian polio survivors now, as they age with the Late Effects of Polio today.

This may help you to explain to family, friends, doctors etc just how bad this is.

I think I am just “lazy”. It is too much of an effort to get up, to walk around, to do the any work, to prepare meals. I make excuses to myself.

I can’t even think straight to “work out” what I have to do. But it has to be done. So I push myself to get on with it. I think I should be doing things, so I do. Then I am so exhausted that I am overcome with a mind-dampening exhaustion – brain fog that requires complete relaxation lying on a bed, not even thinking. After half an hour or so I start to feel some energy returning. I get up again because I can’t lie here all day. Must get on with the day’s work.

Everything is such an effort. It is like wading through water. It is an effort to put one foot in front of the other. I find the length of my stride has lessened and I have widened the base on which I walk – because I don’t feel steady on my feet and am likely to overbalance and fall over.

I find I am exaggerating lifting my feet – and put them down with a stamping effect, as I am not sure how high I need to lift them to clear the ground or how far down again to get to the floor.

I drive around looking for the closest parking spot to the shops. By the time I walk in and get a trolley, I’m wondering where I will find the energy to push it around the aisles, let alone get back out to the car. Sometimes I don’t even get out of the car. I start the engine and go home again as I didn’t have the energy to even get out of the car to go shopping. These days I only shop for essentials – like food!

Gone are the days when shopping is a pleasure and a day out with a friend is a treat!

I find I am driving with only one hand on the steering wheel. The other is resting in my lap.
It takes too much effort to have both hands on the steering wheel if I don’t have to.

When I sit in a chair, I tend to slump, and slide further and further down the chair. I know I am sitting round shouldered but I just can’t stay sitting up straight. I end up going to lie down on the bed – it is too much effort to even get up out of the chair to go to the bed – but I know I will recover more quickly if I do lie down.

I have problems hanging out the clothes as I can’t keep my arms above my head for too long. Just getting the washing basket out to the washing line wears me out. I have to go back inside and lie down on the bed for 15 minutes or so to get enough energy back to go outside again to try to hang some of it on the line. The same bringing it in again. I really need my family to do it for me.

If only they were still here to help me! It takes so long to do what used to be simple tasks.

What is wrong with me? I struggle to mow small sections of the lawn, or weed a garden bed, wash the car. I used to be able to do all this so easily!

I am so angry and frustrated that I can’t do what everyone else considers “normal” things, without it being a super-human effort. I hate having to ask my family to help me do what I used to be able to do. I feel they don’t value me anymore and resent me being here – having to help me.

They do not understand how difficult life has become for me. I hate being a burden on my family so much that I have considered ending my life to release them from the burden of my being here. My doctor can’t find anything wrong. He says it must be all in my head. He says I need antidepressants – but then I feel worse.

Is this all there is left? I feel like my life is over – it is all just too hard for me. Is this maybe what they call – “Post-polio fatigue”?

I don’t like to admit it. So often I knock back offers of help without even thinking – saying “No thanks. I am right!” or .“I can manage thanks!” even when I can’t. But maybe now I need to accept that I can actually make others feel good about themselves, by allowing them to help me.

But what can we do about it?

September 2022 Newsletter

The big news in this newsletter is the AGM on Sunday 30 October 2 pm at the Polio office. Please RSVP if you plan to attend, and bring a plate of food to share for afternoon tea. Nominations are hereby called for President, Secretary and for 2 Board members as per our Constitution. Present Board members are happy to continue in these roles.

Also, mark your diary for the Christmas Party on Sunday 4 December from 12 pm at the Polio office.

https://polioclinic.files.wordpress.com/2022/09/polio-clinic-wa-newsletter-sept-2022.pdf

Vitamin B6

Vitamin B6 (pyridoxine) is important in metabolism of proteins, lipids and carbohydrates. It is required for nerve and cognitive health, protects immune function and prevention of anemia.

It can be found in a wide variety of foods – beans, grains, nuts, fish, meat, vegetables, and non-citrus fruits, so it is rarely deficient in those who have a healthy diet unless they have coeliac disease or inflammatory bowel disease. It has been seen in pregnancy and pre-eclampsia, but is most commonly associated with alcohol-use disorder, tobacco smoking, protein-energy malnutrition or obesity. Absorption of vitamin B6 can be impaired in the elderly, rheumatoid arthritis, hepatitis, or kidney failure.

It is unlike any other vitamin in that deficiency or excess can cause similar symptoms, such as peripheral neuropathy.

Deficiency can cause a syndrome indistinguishable from Pellagra (which is due to Vitamin B3 / niacin deficiency). Weakness, dizziness, inflamed tongue, cheilosis, dermatitis (seborrheic, in sun-exposed areas), numbness/weakness/burning of the hands/feet, incoordination, depression, irritability, confusion or seizures can be signs of deficiency. It increases the risk of heart attack, stroke and blood clots.

Meyer HE, Willett WC, Fung TT, Holvik K, Feskanich D. Association of high intakes of vitamins B6 and B12 from food and supplements with risk of hip fracture among postmenopausal women in the Nurses’ Health Study. JAMA Netw Open. 2019 May 3. 2 (5):e193591. [QxMD MEDLINE Link].

Because of the risk of excess vitamin B6, it is best to supplement it using food choices, rather than tablets. The best sources are liver, fish, chicken, beans, peas, tomato, oranges, bananas, and avocados. Additional supplementation should be considered when using certain medications – isoniazid, hydralazine, levo-dopa and penicillamine.

Carnitine and pregnancy

The Swiss based company Lonza announced that a new study observed that supplementation with L-Carnitine during pregnancy can significantly reduce the increased level of plasma free fatty acids, which is considered the main cause of insulin resistance, a major factor in gestational diabetes in pregnant women. This company- supported study conducted at the University of Vienna (Austria) was published in Chemical Monthly 136, 1523- 1533 (2005).

Already by the 12th week of pregnancy, plasma L- Carnitine levels are significantly decreased, with a further reduction up to birth. This reduction of total L-Carnitine is mainly caused by a significant decrease of free L- Carnitine levels. Similar low levels of free L-Carnitine are only found in patients with a Carnitine deficiency.

Studies show a drop of carnitine blood levels from a normal of 39 umol/L to 22 by 11 – 15 weeks of pregnancy down to a very low 12 by the time of delivery. ie Carnitine levels in the expectant mother have halved in the first trimester of pregnancy and are one third of their starting levels by the end of the pregnancy. More recent studies also confirm this drop of carnitine levels in pregnancy. Any level from around 25 – 30 is considered carnitine deficient. Polio survivors and their descendents need levels of 50 + to alleviate fatigue.

Tessa Jupp has been recommending for years that any children/ grandchildren of polio survivors pregnant or contemplating pregnancy (male or female) should be taking carnitine supplementation up to 12 months prior to conception if possible and certainly through the pregnancy and while breastfeeding in order to avoid passing this problem on to successive generations. This is borne out with new information available on Epigenetics.

A child of a WA polio survivor had used carnitine to recover from debilitating fatigue herself some years ago, since married and had 2 children who have no sign of carnitine deficiency. However she stopped taking carnitine before having her third child and now finds that child has poor muscle tone and delayed milestones consistent with carnitine deficiency. This is likely to be a life-long problem now for that child.

We have the power to turn off this epigenetic switch by ensuring parents have adequate nutritional status before pregnancy so that we have healthy children not affected by the problems besetting their polio parents.

June 2022 Newsletter

There’s lots in this newsletter to help get you through the cold-and-flu season, as well as some very useful old-fashioned recipes and remedies.

One of our office volunteers fell over at home a few weeks ago, fracturing her polio leg above the knee. Luckily she only had to wait 15 minutes for an ambulance! When the orthopods at SCGH got to see her, they said that THEY KNEW all about POST-POLIO and devised the best plan to manage the surgery for her weaker-boned polio leg, the best anaesthetic to use, and how to get her back on her feet for rehab as soon as possible.

Brenda Lake and Tessa Jupp were asked to conduct in-service lectures at some of our major hospitals in the late 1990s and Dr Niblett had input at SCGH as well. He worked there as a Radiation Oncologist & used SCGH services for himself, as a polio survivor, as did Brenda. Hospitals here have had our post-polio paperwork for many years, and thanks to our and your efforts over the past 30 years, it is coming to fruition.

It was as a result of one of these lectures at RPRH in late 1998, that with the help of Jega & her colleagues there, the WA Health Dept agreed to start our Late Effects of Disability Clinic in 2000. This is still operating now, at Fiona Stanley Rehab Hospital.

So it is perhaps timely to print for you again, the Conference Speech that Brenda gave on behalf of all polio survivors, at the World Polio Conference in Tunisia in 1997.

OFFICE ENTRY CHANGES due to COVID

To keep us all safe at the moment, we have put a pick-up table at the doorway to stop people entering our office- space and appointments need to be by phone or email. No face-to-face appointments until Covid dies down.

ALWAYS PHONE on the day if you intend to drop in to make sure there is someone here in the office. Please check first. We never know what is round the corner! My usual times are Tues – Thurs 10.30am – 5pm

Skin and Vitamin B3

Pellagra is the old-fashioned name for sun damaged skin, with dermatitis and ulcers. It is usually associated with a deficiency in Vitamin B3 (niacin). A painful, swollen tongue, anxiety, depression, loss of appetite or diarrhoea may also occur.

An article in The New England Journal of Medicine (Damian, 2015) reported that the risk of developing skin cancers can be reduced by increasing intake of vitamin B3 (nicotinamide) in high risk patients.

For more information and graphical images.

Vitamins and minerals

Here is a quick guide to symptoms and potential remedies.

Vitamins include Vitamin A, Vitamin B1 (thiamine), B3, B6, B12, Vitamin C, Vitamin D, Vitamin E, Vitamin K

Minerals include Boron/Borax, Chromium, Iodine, Iron, Magnesium, Manganese, Potassium, Selenium, Zinc. You can see the Zinc elephant, or read Dr Tab’s summary.

There are also Essential fatty acids and essential peptides (Carnitine, Choline, Gelatine, Glutamine, Taurine, Tyrosine).

There is more information about Taurine here, here, and it’s impact on weight loss and exercise as well as on blood pressure and cardiovascular risks.

Fibromyalgia

Post polio literature has for many years, mentioned polio survivors experiencing fibromyalgia. In Western Australia we have been successfully treating this with large doses of supplemental magnesium chelate. Taking this with Vitamin C is helpful to control the pain and help absorption. Manganese stops the stiffness we get after sitting for a while.

Magnesium, boron and castor oil can be very helpful when massaged on to the skin.