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New light on an old disease still lived in the now | Stuff.co.nz.

[09:00, Nov 10 2018]

Mervyn Dykes was inspired to write his book about having polio when he realised he was not the only one to feel isolated.
DAVID UNWIN/STUFF
Mervyn Dykes was inspired to write his book about having polio when he realised he was not the only one to feel isolated.

Carly Thomas writes:

It's a disease often thought of in the past tense, but in Mervyn Dykes' new book, polio is put very much into the spotlight. Carly Thomas listens to his story. 

Mervyn Dykes carries a walking stick and getting around doesn't come easy for him.

He has the voice of an actor, smooth and vigorous, and when you listen to him tell his story of polio, you can hear this man is strong.

He was a go-getter, an actor and a journalist with ambition, cunning and talent.

Dykes, 76, contracted polio when he was 7 years old, in the pre-vaccine days of the late 1940s, but he never displayed any symptoms.

READ MORE:
Unicef: Polio's awful impact still being felt in New Zealand
Roger Hanson: Modern vaccines take away the fear of diseases like smallpox, diphtheria, tetanus or polio

He saw himself as one of the lucky ones and he says no-one really talked about the disease.

For others, the outcome was paralysis and death, and the frightened picture society painted of those struck down by it was of a sickly cripple. 

But Dykes was just a kid living a carefree Kiwi existence, where he says the summers seemed to last forever.

He went through his early adulthood with just as much gusto as his childhood. A physical person, who set himself running goals, he competed in discus against the prevailing Wellington winds and played many sports. 

Dykes' first foray into journalism was covering sports and he went on to work in Canadian newspapers and then back here at The Dominion and the Manawatū Standard.

He covered everything, won many awards and had a reputation for being able to write fast and well. Dykes was ambitious, driven and relentless.

And then it happened. The quiet, back-burning disease of his childhood snuck up on him. Post Polio Syndrome (PPS) struck about 10 years ago and slowly but surely, symptoms started to arrive into his everyday.

"Everything hurt and I had a lot of mental confusion. I lost my ability to read and write, which was a hard thing for me. I thought: 'Hey, you have my body, now leave my mind alone'."

Dykes says he became affected by stress, a major trigger for PPS, and at the time of his son's death things started to really escalate.

His left forearm stopped working, his back ached and standing for more than 10 minutes was a struggle. His knees were no longer guaranteed to support him and Dykes' daily life was getting more and more pressed upon by polio. 

He was frustrated and angry and this confident, capable man was also confused and scared.

Mervyn Dykes' new book Polio and Me.
DAVID UNWIN/STUFF
Mervyn Dykes' new book Polio and Me.

And this is when he had an experience that eventually led to him writing his book, Polio and Me. This self-proclaimed stubborn and independent man admitted he needed help. 

Dykes met Raylee Murphy from Polio New Zealand, before he had started to suffer from PPS, when he wrote an article about the anniversary of the Salk Polio vaccine.

When he mentioned to her that he had had polio too, Dykes says her questions of: "How's your back? How are you arms, your legs? Do you have difficulty breathing?" irked him. He was fine and he told her so.

But then he wasn't and in desperation Dykes went to her for help. He needed someone to talk to and talk he did.

"I started to unload all these problems I was having and I basically told her it was all a personal conspiracy and she gave me a one-word answer."

"Bulls..." said the straight-talking Murphy. And Dykes says it was just what he needed.

Although polio was different for different people, at its centre it was the same disease, and what he was experiencing wasn't as bad as what some people were.

She was wonderfully direct and Murphy also told Dykes to go to the Queen Elizabeth specialist hospital in Rotorua.

He followed her advice and not only was it a trip that helped him immensely, it set him on a path of learning how to not just manage his polio, but it also gave him the impetus to write his book.

While there, crucially, he met others going through a similar thing. They talked, compared notes and gave each other that wonderful human connection of understanding. Dykes says one of the worst things about having a disease like polio is that it can isolate. 

"We tend to lock ourselves away a bit. It's hard to go out, so why bother? We withdraw, we feel alone and that is sad."

And so Dykes has extended a hand.

He learnt to write again, encouraged by the staff at the hospital. He did what he used to do – he set himself word counts and deadlines and he got determined and stubborn again.

He has written a number of books, but this one is perhaps the most pertinent. It tells his story, plainly and without apology.

Author Mervyn Dykes at the launch of his new book Polio and Me.
WARWICK SMITH/STUFF
Author Mervyn Dykes at the launch of his new book Polio and Me.

Polio is a disease that has been forgotten about, says Dykes, and along with that so have the sufferers.

"Society heaved a sigh of relief believing that polio was eradicated and there was no need to think about it anymore. The health professionals who treated polio so long ago have died off and there has been little or no research for 50 years into the effects polio had on these survivors.

"Many hoped the whole issue of polio would go away. However, there are still hundreds if not thousands of people who had polio before the vaccinations who are still living with the late effects of polio."

His book is for them, with some solid advice on where and how to get help, and it's a firm mark made on a page by a man who's whole outlook on life has changed.

It's one more thing as well, whether he meant it to be or not: Dykes' book is a testimony to the way the human spirit can find new ways to be happy, creative ways to carve out a life worth living and how one directly spoken word was enough to shake up a person's whole view of existence. 

Polio and Me by Mervyn Dykes is available at Palmerston North's Bruce McKenzie Booksellers.


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Press Release: Possible treatment for rare polio-like illness shows no benefit | EurekAlert!

[PUBLIC RELEASE: 9-NOV-2018] [AMERICAN ACADEMY OF NEUROLOGY]

MINNEAPOLIS - Researchers have been searching for possible treatments for the polio-like illness causing paralysis in children, called acute flaccid myelitis. But a new study shows no signal of efficacy for one potential treatment, the antidepressant fluoxetine. The study is published in the November 9, 2018, online issue of Neurology®, the medical journal of the American Academy of Neurology.

[Safety, tolerability, and efficacy of fluoxetine as an antiviral for acute flaccid myelitis - Neurology http://bit.ly/2Fg2Tup - ppn editor]]

Research suggests that the virus called enterovirus D68, or EV-D68, is one possible cause of acute flaccid myelitis. Lab tests showed that fluoxetine had antiviral effects against EV-D68, so the antidepressant was suggested by various experts as a possible treatment for acute flaccid myelitis, which can cause sudden muscle weakness in the arms, legs or neck, drooping eyelids and difficulty swallowing, speaking and breathing.

"The lack of an efficacy signal for the treatments for acute flaccid myelitis evaluated in this study emphasizes the need for development and prospective evaluation of more effective treatment and prevention strategies for this potentially devastating condition," said study author Kevin Messacar, MD, of Children's Hospital Colorado in Aurora.

For the retrospective study, researchers looked at the cases of 56 children with acute flaccid myelitis in 2015-2016 from 12 medical centers across the country. The children ranged in age from 2-1/2 to 9 years old.

The 28 children who received more than one dose of fluoxetine were compared to the 26 children who did not receive the drug and two who had only one dose and were considered part of the untreated group. The children's muscle strength in their arms and legs was recorded to determine whether the drug was effective.

At their first exams, there was no difference between the two groups in muscle strength. But by the end of the study an average of seven months later, the children who had taken the drug had lower strength scores than the children who did not receive treatment. After adjusting for factors that could affect the results, such as age, sex, other treatments the children received and their strength level at the first exam, the researchers found that on a scale of 0 to 20 that grades muscle strength throughout all four limbs, the strength scores of children who received the drug worsened by 0.2, while the scores of those who did not receive the drug improved by 2.5.

The researchers also looked at the strength score of the weakest limb in each child and found the difference in this score from initial examination to latest follow-up was worse for children who received the drug than those who did not.

The drug was well-tolerated by the children, with the number of side effects similar between those receiving the drug and those who did not.

A total of 91 percent of the children were sick before developing acute flaccid myelitis, with 71 percent having fever and 73 percent having respiratory symptoms. Weakness started an average of 8.5 days after the start of the illness.

More than 40 percent of the children had an enterovirus in their system, with 36 percent having EV-D68. A total of 57 percent of those who received the drug had EV-D68, compared to 14 percent of those who did not receive the drug.

Messacar noted that the study has several inherent limitations in that it was looking back in time, patients were not chosen at random to receive the treatment or not and doctors and patients and their families were aware that they were receiving the drug. In addition, the small number of patients may make it difficult to draw definite conclusions.

###

The National Institutes of Health provided support for investigators involved in the study.

Learn more about brain health at BrainandLife.org, home of the American Academy of Neurology's free patient and caregiver magazine focused on the intersection of neurologic disease and brain health. Follow Brain & Life® on Facebook, Twitter and Instagram.

The American Academy of Neurology is the world's largest association of neurologists and neuroscience professionals, with over 34,000 members. The AAN is dedicated to promoting the highest quality patient-centered neurologic care. A neurologist is a doctor with specialized training in diagnosing, treating and managing disorders of the brain and nervous system such as Alzheimer's disease, stroke, migraine, multiple sclerosis, concussion, Parkinson's disease and epilepsy.

For more information about the American Academy of Neurology, visit AAN.com or find us on Facebook, Twitter, Instagram, LinkedIn and YouTube.

Media Contacts:

Renee Tessman, rtessman@aan.com, (612) 928-6137

Michelle Uher, muher@aan.com, (612) 928-6120

Disclaimer: AAAS and EurekAlert! are not responsible for the accuracy of news releases posted to EurekAlert! by contributing institutions or for the use of any information through the EurekAlert system.


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I’m not afraid of my scars, they beautify me – Ihuoma, polio survivor | Punch Newspapers.

[Published November 10, 2018]

At the age of three, Susan Ihuoma’s legs were affected by poliomyelitis. She tells TOLUWALOPE KAREEM about her journey and how she has managed to push herself in life despite her physical disability

Could you share the story of your physical challenge?

I lost my legs at the age of three to poliomyelitis because I was not given vaccine for prevention of the viral disease as a child and this was due to lack of awareness in Kano, where I was born at the time. Their misconceptions about vaccination can be deadly, which is why education campaigns are crucial.

I was born in Wudil Local Government Area in Kano State. I had a fever and was taken to the general hospital there for treatment. I was given an injection and then I had paralysis of the legs because I didn’t get immunised as an infant. Hence, my journey with polio started. I stayed at the National Orthopaedic Hospital in Dala-Kano, Kano State for quite some time undergoing physiotherapy and learning how to use walking aids, and my mother kept on teaching me school work even while I was on my sick bed.

It must have been a very difficult period for you, how did you pull through?

I was quite young so basically it was through the support from my parents, going for physiotherapy and getting callipers to assist me to learn how to work. It wasn’t easy but after a while, reality set in that it was a lifelong journey. So I had to be the best and not allow disability to be the yardstick to use to rate me.

Did this affect your education?

I had to be away from school due to the hospital admission and all sorts of rehabilitation process. By the time I went back to school, I had to start from primary three and it was amazing because in primary six, I became the class monitor and I was also amongst the top five students in my class.

I had my primary school education in Kano State where I was born. I attended Rakad International School. I was already in nursery school before the incident. During the period that I was in hospital for medical treatment, I was not attending school, although I had tutorials with the help of my mother while on hospital bed. I had my secondary school education at Egbu Girls Secondary School, Owerri, Imo State and it was a boarding school. Then, I proceeded to a higher institution. I attended Yaba College of Technology, Lagos, where I studied Computer Science and proceeded to the University of Lagos, where I had my first degree in Integrated Science Education and a Postgraduate Diploma in Genetic Counselling.

What were some of the difficulties you had to face as a student?

For me as a polio survivor, infrastructural inaccessibility was a major challenge as I had to climb the stairs to the lecture theatres and laboratories, but I thank God that I made it.

As a student, it was a struggle for me because of the difficulty in having access to some places. I remember in my higher institution, it was challenging to climb two storey buildings for my lectures. I had coursemates who would try to carry me and support me to get upstairs. I wouldn’t eat or drink so as not to feel the need to start climbing the stairs to get to the toilet. When I got admission to study in the University of Lagos after I had my Ordinary National Diploma, I was excited but I continued to face infrastructural barriers, which made it difficult to cope academically but I was persistent. And I should note that Moremi Hall in UNILAG was designed with ramps and there was a room on the ground floor as well as toilets for persons with disabilities, which was the succour I had when I left classes till I graduated.

At the boarding school, I was placed in the most accessible hostel, although the environment wasn’t favourable enough. The preferential treatment I had then was when there was no water; the house prefect would take a cup of water from everyone who went to fetch water till I had a full bucket of water to bathe with. In all the institutions I have attended, there is no special treatment for persons living with disabilities as regards academic work; I had to study and pass like every other person and that was not a problem for me.

What are some of the difficulties you still face now?

It would be inaccessibility to public infrastructure, banks, churches, shopping malls, health facilities, cinemas and so on. Or are we not entitled to see movies? Even schools have no ramps. Instead you will find steps without rails as the only access into the facilities. These are basically my everyday challenges.

What do you do for a living?

I lost my volunteer job with Lagos State last September after volunteering from 2010 to 2017. So I am presently unemployed.

What necessary steps have you taken to secure a new job?

I did the necessary interviews in June and August 2017 to secure a job based on the Lagos State governor’s promise that 250 persons with disabilities would be given jobs. I have written to some of the ministries and also got a recommendation letter from Mrs. Abike Dabiri-Erewa (newly appointed Chairman and Chief Executive Officer of the National Diaspora Commission), but still nothing has been done. I don’t know why I have not been able to secure a job. I am calling on the Lagos State Governor, Mr. Akinwunmi Ambode, to help me, also my state governor, Owelle Rochas Okorocha (Imo State governor), and even the Federal Government to help me secure a job. I went through the same process of training with persons not living with disabilities. I sat my exams and passed after a long training in places where I climbed two storey buildings daily throughout the period.

 As a person, do you face discrimination of any sort?

Yes, I face discrimination against but maybe it is because I am not an indigene of Lagos State. If not, why would I teach as a volunteer from 2010 to 2017 in Mende Junior Secondary School and work at Ogudu Primary Healthcare Centre in Kosofe from 2012  to 2017 as a Health Volunteer, but still failed to get a job when 250 persons living with disabilities were engaged by the state government? I did interviews at both the civil service commission and local government commission yet, I am still unemployed. Both in the Lagos Eko Volunteers Scheme and the Lagos State Health Volunteer Scheme, I was the only person living with disability.

Could you share some of your saddest experiences as a person living with disability?

I live a life of gratitude but one of such experiences would be when I begged an official of the Lagos State Traffic Management Authority to help stop vehicles so that I could cross the expressway and he vehemently refused, saying that people would take his picture and post it on social media. I had to cross the road by myself and that helped me to stay independent.

What has been your happiest moment as a person living with disability?

My happiest moment was coming out tops in my postgraduate class because I was shuttling between the volunteer jobs and classes then and it was quite hectic going from school to work. The second best moment was when I received an award as the Best Science Teacher in District Two as a volunteer in 2012.

Are you married?

No, I am still single.

 What has been your experience with men, particularly in your relationships?

I have admirers like any other person because I am a human being. There have been failed relationships because of my disability, but I believe that they are the ones who lost because I am beautifully and wonderfully made in the image of God. When the right man comes along, wedding bells will definitely ring.

Would you say your disability has opened or closed more doors for you?

My disability has opened doors and taken me to places I never envisaged I would go to because I speak about it on all my social media platforms. Living in denial won’t change a thing. For the closed doors, when it is time, they will be open. Disability is the reason why I’m granting this interview, you never can tell who might help me get a job or need my help to counsel another person living with disability. I am not afraid of my scars; they beautify me.

What inspires you?

My inspiration comes from God because he has kept me through it all, I am so grateful for amazing grace.

Do you think people are getting more aware of the needs of persons living with disabilities?

The awareness is on the increase but we need President Muhammadu Buhari’s assent to the Special People’s Bill so as to harness the extraordinary talents imbedded in this vulnerable members of the society. Yet, they are too often forgotten.  When people with disabilities are denied opportunities, they are more likely to fall into poverty and people living in conditions of poverty are more likely to develop disabilities.  As long as societies exclude those with disabilities, they will not reach their full potential and the poor in particular will be denied opportunities that they deserve.

In what ways do you think persons in this category can make something good out of their lives?

First, as human beings, we should be given equal opportunities; empathy is what we need. We are educated, and poverty is associated with disability. A person is no less valuable because they are in a wheelchair or bedridden. A person is not less valuable because an illness has robbed them of the use of their body. A person living with disability is no less human because they must wear an adult undergarment. A human being is not less desirable because they have a mental illness. In many ways, persons living with disabilities can be viewed as exceptional. They fight simply to survive which makes them strong in ways that even they do not realise.

What advice do you have for mothers who have the opportunity to take their babies for vaccination and have not done so?

For those who have the opportunity to protect their children with the polio vaccine, prevention is better than cure, you have to go to the nearest health facility to immunise your babies so that we can get rid of the scourge called polio, especially in the North-East and in Nigeria at large. Do not hesitate for one moment. You and your families are beyond lucky to be able to avoid this paralysing disease.

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Intestinal Immunity to Poliovirus Following Sequential Trivalent Inactivated Polio Vaccine/Bivalent Oral Polio Vaccine and Trivalent Inactivated Polio Vaccine–only Immunization Schedules: Analysis of an Open-label, Randomized, Controlled Trial in Chilean Infants | Clinical Infectious Diseases.

[Open Access] [Published: 30 October 2018]

Abstract.

Background.

Identifying polio vaccine regimens that can elicit robust intestinal mucosal immunity and interrupt viral transmission is a key priority of the polio endgame.

Methods.

In a 2013 Chilean clinical trial (NCT01841671) of trivalent inactivated polio vaccine (IPV) and bivalent oral polio vaccine (bOPV; targeting types 1 and 3), infants were randomized to receive IPV-bOPV-bOPV, IPV-IPV-bOPV, or IPV-IPV-IPV at 8, 16, and 24 weeks of age and challenged with monovalent oral polio vaccine type 2 (mOPV2) at 28 weeks. Using fecal samples collected from 152 participants, we investigated the extent to which IPV-bOPV and IPV-only immunization schedules induced intestinal neutralizing activity and immunoglobulin A against polio types 1 and 2.

Results.

Overall, 37% of infants in the IPV-bOPV groups and 26% in the IPV-only arm had detectable type 2–specific stool neutralization after the primary vaccine series. In contrast, 1 challenge dose of mOPV2 induced brisk intestinal immune responses in all vaccine groups, and significant rises in type 2–specific stool neutralization titers (P < .0001) and immunoglobulin A concentrations (P < 0.0001) were measured 2 weeks after the challenge. In subsidiary analyses, duration of breastfeeding also appeared to be associated with the magnitude of polio-specific mucosal immune parameters measured in infant fecal samples.

Conclusions.

Taken together, these results underscore the concept that mucosal and systemic immune responses to polio are separate in their induction, functionality, and potential impacts on transmission and, specifically, provide evidence that primary vaccine regimens lacking homologous live vaccine components are likely to induce only modest, type-specific intestinal immunity.


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Psychometric Properties of Three Fatigue Rating Scales in Individuals With Late Effects of Polio | Annals of Rehabilitation Medicine.

[Open Access] [Received December 21, 2017; Accepted March 5, 2018; Published online: October 31, 2018]

Abstract.

Objective.

To evaluate the psychometric properties of the Fatigue Severity Scale (FSS), the Fatigue Impact Scale (FIS), and the Multidimensional Fatigue Inventory (MFI-20) in persons with late effects of polio (LEoP). More specifically, we explored the data completeness, scaling assumptions, targeting, reliability, and convergent validity.

Methods.

A postal survey including FSS, FIS, and MFI-20 was administered to 77 persons with LEoP. Responders received a second survey after 3 weeks to enable test-retest reliability analyses.

Results.

Sixty-one persons (mean age, 68 years; 54% women) responded to the survey (response rate 79%). Data quality of the rating scales was high (with 0%–0.5% missing item responses), the corrected item-total correlations exceeded 0.4 and the scales showed very little floor or ceiling effects (0%–6.6%). All scales had an acceptable reliability (Cronbach’s α ≥0.95) and test-retest reliability (intraclass correlation coefficient, ≥0.80). The standard error of measurement and the smallest detectable difference were 7%–10% and 20%–28% of the possible scoring range. All three scales were highly correlated (Spearman’s correlation coefficient rs=0.79–0.80; p<0.001).

Conclusion.

The FSS, FIS, and MFI-20 exhibit sound psychometric properties in terms of data completeness, scaling assumptions, targeting, reliability, and convergent validity, suggesting that these three rating scales can be used to assess fatigue in persons with LEoP. As FSS has fewer items and therefore is less time consuming it may be the preferred scale. However, the choice of scale depends on the research question and the study design.

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Genetic Predisposition to Infectious Disease | Cureus.

[Open Access] [Received by Cureus: August 20, 2018; Peer review began: August 20, 2018; Peer review concluded: August 22, 2018; Published: August 27, 2018]

Abstract.

In contemporary medical practice, approaches to infectious disease management have been primarily rooted in a pathogen-centered model. However, host genetics also contribute significantly to infectious disease burden. The fast expansion of bioinformatics techniques and the popularization of the genome-wide association study (GWAS) in recent decades have allowed for rapid and affordable high-throughput genomic analyses. This review focuses on the host model of infectious disease with particular emphasis placed on the genetic variations underlying observed infectious disease predisposition. First, we introduce observational twin-twin concordance studies of diseases such as poliomyelitis, tuberculosis, and hepatitis which suggest the important role of host genetics. We review the well-established links between specific genetic alterations and predisposition to malaria (P. falciparum and P. vivax), Creutzfeldt-Jacob disease (CJD), human immunodeficiency virus (HIV), and Norwalk virus. Finally, we discuss the novel findings yielded by modern GWAS studies, which suggest the strong contribution of immunologic variation in the major histocompatibility complex (MHC) to host genetic infectious disease susceptibility. Future large-scale genomic studies hold promise in providing insights into immunology-pathogen links and may allow for the development of personalized genomic approaches to infectious disease prevention and treatment.


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