People with Multiple Sclerosis – please take part in a survey for Queen’s University. This could help to improve information for the MS community.


Queens University Kingston Ontario

Queens University Kingston Ontario

Researchers at the School of Kinesiology and Health Studies at Queen’s University (Kingston, Ontario, Canada) are seeking individuals with multiple sclerosis (MS) to participate in an online research study.

The purpose of the study is to examine the effectiveness of health and physical activity messages provided to adults (18-64 years of age) with MS. For more information and to access the study website, please click on the following link:

http://queensu.fluidsurveys.com/s/msmessaging/

If you have any questions about the study, please contact Alexander Lithopoulos at messaging.and.motion@queensu.ca

This research is important because it will provide valuable information about how we should design advertisements to get adults with MS physically active and healthy. So, please consider participating and spreading the word about the study to others!


Carers Rights Day 2014 – Friday 28th November. Please share.


Carers Rights Day

Carers Rights Day

As many of you will know by now I am the carer or caregiver of an eight year old boy with autism.

So, like many of you, I take a great deal of interest in the whole area of carers rights.

So I’m delighted to put my wholehearted support behind Carers Rights Day which is organised by Carers UK.

To show your support it would be great if you could share the logo above and a link to the Carers Rights Day website. The link allows you to sign up for more information and to find out what your rights actually are.

Many thanks.


National Hospice Palliative Care Month – Eight Tips to Help Someone Grieving During the Holiday Period.


 National Hospice Palliative Care Month

National Hospice Palliative Care Month

November , as you may know is, National Hospice Palliative Care Month.

As a way of marking this important awareness month I thought it would be useful to share some recent advice provided by the National Hospice and Palliative Care Organisation (NHPCO). The National Hospice and Palliative Care Organisation is America’s largest palliative care support organisation.

Next weeks sees Thanksgiving in the US with Christmas and Hanukkah falling in December. So we thought these useful tips in how to support people who are suffering a bereavement during this period might prove very useful!

To ensure that nothing is missed I am quoting from a recent document produced by NHPCO.

“Hospice professionals, who are experienced at helping people deal with grief and loss, offer some suggestions:

  • Be supportive of the way the person chooses to handle the holidays. Some may wish to follow traditions; others may choose to avoid customs of the past and do something new. It’s okay to do things differently.
  • Offer to help the person with decorating or holiday baking. Both tasks can be overwhelming for someone who is grieving.

  • Offer to help with holiday shopping. Share catalogs or online shopping sites that may be helpful.
  • Invite the person to join you or your family during the holidays. You might invite them to join you for a religious service or at a holiday meal where they are a guest.
  • Ask the person if he or she is interested in volunteering with you during the holidays. Doing something for someone else, such as helping at a soup kitchen or working with children, may help your loved one feel better about the holidays.
  • Never tell someone that he or she should be “over it.” Instead, give the person hope that, eventually, he or she will enjoy the holidays again.
  • Be willing to listen. Active listening from friends and family is an important step to helping some cope with grief and heal.
  • Remind the person you are thinking of him or her and the loved one who died. Cards, phone calls and visits are great ways to stay in touch.

“One of the best ways to help those who are grieving during the holidays is to let them know you care and that their loved one is not forgotten,” said J. Donald Schumacher, PsyD, president and CEO of National Hospice and Palliative Care Organization. “Lending an ear and holding a hand can be one of the greatest gifts we can give.””

If you have any other suggestions it would be great to hear them. Please feel free to share in the comments section below.

Many thanks in advance!

Autism and Parenting – how does parenting influence the emotional development of children with autism? Please help students at West Virginia University with some important research.


West Virginia University

West Virginia University

As many of you know I come from a survey research background. So am aware of both value and the pitfalls of research. That being said more needs to be done in and around the world of autism. Indeed I consider surveys to be a great way of giving people in the ASD community a voice.

I few days ago I was contacted by some students studying the impact of parenting on the emotional development of children with ASD.

The study is being conducted by This study is being conducted by Hilary Bougher and Amy Root in the Department of Learning Sciences & Human Development at West Virginia University.

Bougher and Root write:-

“ATTENTION PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER BETWEEN THE AGES OF 3 AND 11: I am currently conducting a study examining how parents of children with autism promote their children’s emotional development. We are interested in examining the unique experiences and ways in which parents of children with autism respond to their children’s emotions and teach them to regulate their emotions. If you are a parent or guardian of a child aged 3 – 11 years with autism spectrum disorder, you may be eligible to participate in a West Virginia University IRB-approved study on parenting. We are interested in learning about the parent-child interactions of parents of children with autism between the ages of 3 and 11. If you are eligible to participate, you may opt into a drawing to receive a $100.00 gift card for completing a 45-minute survey. Surveys can be completed online. Please note, your answers will be completely anonymous and no identifying information will be linked to your answers. IRB Approval is on file for this study. ”

You can take part in the study by following the link here.


Are you at risk from the ‘flu this winter? Read our interview with Dr Jonathan Pittard



Do you need a flu jab?

Do you need a flu jab?

More than half of Doctors think the main reason at-risk patients do not take up flu vaccination is because they are concerned the vaccine itself could give them flu-like symptoms, according to results of a recent survey.

53 per cent of professionals polled rated this as the top reason why they think at-risk patients – including over 65s, pregnant women and those with weakened immune systems because of other diseases – miss out on vaccination. It ranked in the top five reasons among 94 per cent of respondents.

The next biggest concern for HCPs was that patients who have not previously had flu do not consider themselves at risk, with 86 per cent placing this in the top five reasons patients miss the jab. And 76 per cent said patients being unaware of the increased risk of complications from flu were among the top five reasons.

Flu is an infectious viral illness spread by coughs and sneezes. It is different from the common cold because it is caused by different viruses and tends to result in more severe and long-lasting symptoms. Flu can be prevented through good hygiene, vaccination and, in some cases, antiviral medication.

During the last flu season, uptake of the flu vaccine varied in at risk groups with just around 40% of pregnant women and 73% of over 65s being immunised across England.


To find out more we contacted an interview with Dr Jonathan Pittard, a UK based family doctor.

PATENTTALK.ORG: Thanks for taking time to talk us Dr Pittard, can you start by telling us what influenza is?

DR PITTARD: Well influenza is a viral illness of several different strengths but you only get one at a time. Essentially it gives you a very high fever, and a very bad headache and a very bad muscle ache. So essentially for 4 or 5 days you are sneezing and snuffling a bit, you can hardly stand up, you can get to the bathroom and back to your bed and you feel pretty dreadful. It is a bit like having malaria so it is way worse than a cold.

PATENTTALK.ORG: And, what are the different types of flu and how do they infect people?

DR PITTARD: There are two classifications; there is A influenza and B influenza.  B has by reputation to be slightly more severe. The most recent A one that people will be familiar with would be swine flu, which came out in 2009-10.  We vaccinated a lot of pregnant women then because it was worst in pregnancy.  The actual illness I had in April of that year and happily it was just for the Friday, Saturday, Sunday so I didn’t miss any work but the current vaccine has a 2009 strain in and two from 2012.  One of A vaccine and one of B virus and they were identified in the States. In the case of Swine flu it came up from Mexico from pigs to humans and that’s how it has picked up.  So the World Health Organisation keeps an eye out for this like Sherlock Holmes and spots what the trends would be; the virus strains that we haven’t had in Europe and it will put the manufacturers on advice to make the vaccine to anticipate the ones we haven’t had.

PATENTTALK.ORG: Could you just tell us a little bit about the particular danger posed by the different strains of flu,  such as bird flu.

DR PITTARD: Well the biology of it seems that these viruses, similar with the Ebola virus, they seem to get into animal systems and seem to mutate there. And then there are places in China in case of bird flu there are a lot of poorer Chinese who will live with chickens in their house and because chickens are kind of valuable they keep them under their beds, you can well imagine if you stay with a chicken long enough it may share one of its viruses with you, and when the jump is made from avian bird flu to a human often the human system reacts very badly to it, and there have been one or two deaths.  So it is quite interesting biology.  In the case of the Ebola virus, it was bush meat and people were eating these animals and getting these animal viruses.

PATENTTALK.ORG: Can you just briefly outline how the flu jab works?

DR PITTARD: What happens is the myth that the survey shows, people object to the flu vaccine on the one ground is maybe that they think it will give them the flu.  Some viruses are actively vaccinated into us.  Polio used like that – it was audited in a way that it didn’t make you ill but it gave you immunity for life.  With the flu vaccine they extract the infectious part and they just give you the virus ‘skin’, to give it to you in simpler terms and it then prompts your immune system to look out for that virus when you meet it live in the future. So after about ten days you meet the live virus your immune system won’t take a hold because it will recognise the skin, the armour if you like, and will destroy it before it starts with the  Interferon that is the body’s anti-viral.  So it is a dead vaccine, it won’t give you the flu.

PATENTTALK.ORG: So is it a myth, then – that you may develop symptoms of flu by having the jab?

DR PITTARD: Yes, I think what happens is when people go to the doctors they pick up a virus in winter, they are incubating it they get hit in the waiting room or the supermarket on the way home, and it coincides with the flu vaccine and for a few patients they say “Oh, well that is what has given me the flu, I should not have had the flu vaccine”, and so they become adverse to it.  Most of our patients don’t subscribe to that but that is what the survey, Ipsos Moray GSK Survey showed.  And so we are really keen to expose that as a myth.

PATENTTALK.ORG: Are there any possible complications from having the flu vaccine?

DR PITTARD: Well the headline objection that’s very rare is that if a patient has true intolerance to eggs, and you might not like eggs, you might not like egg soufflé or egg fried rice or omelettes but that is not an allergy an allergy is where your tongue swells up, your eyes close, you need adrenalin, and you get very asthmatic I mean that is very rare to eggs it is probably as rare as being allergic to milk but because the vaccine is prepared using live hens eggs which is un-purified there is a theoretical objection to that, but that is the only headline issue. If for example you are very allergic to rare ingredients in the flu vaccine, the preservatives in the other vaccines you have had a reaction to tetanus, you have had a reaction to pneumonia vaccine, then possibly your doctor will know that.  These are very rare 1 in 10,000 or 1 in 1,000,000 cases.  For the bulk of us, none of that applies. If you can tolerate eggs, you can tolerate the flu vaccine.

PATENTTALK.ORG: Who is particularly at risk from believing in these myths?

DR PITTARD: The best way to answer that is the “at risk” population. Most GPs are concerned with the over 65’s because you tolerate flu worse and worse as you get older.  The rest of your biology is compromised by aging; heart, lungs and so on.  You are more likely to get pneumonia and you are less likely to be able to look after yourself.  Younger patients that battle on are a bit stronger I guess.  So the national policy is to vaccinate the over 65’s and also vaccinate people with pneumonia and bronchitis risks, diabetic risks, heart disease risks and one of the two groups like care workers and ambulance drivers.  These are the people that need the vaccine and they are the ones that are likely to object for grounds of getting the flu from the flu vaccine, which is not true.  The other objections that the survey showed is they thought that they never got the flu so they didn’t need it. Of course eventually, it is like Russian roulette, they will get it.

PATENTTALK.ORG: Final question, what is your advice to anyone who might be worried about getting the flu?

DR PITTARD: Well, the national policy which had thousands of patients seeing their GP’s in October / November and the GP’s keep the flu vaccine in their surgery, their special clinics, and kept in touch with their practice, if you have moved area just talk to the reception staff and they will make it very easy for you to get your vaccine.  If you are concerned that you may have a particular risk then you can have a consultation with your GP by phone for example, and they can often phone you back, book an appointment to talk about it or if you are outside of the risk group that the NHS will vaccinate you then you can still go to pharmacy chains and buy the vaccine for about £10, maybe less, and have it yourself. There are very few contraindications of having this, it is a very safe procedure.

 

One third of the planet do not have basic sanitation say WHO. Is this a major health threat?


Is basic sanitation a human right?

Is basic sanitation a human right?

Years ago I was at a conference having a conversation with a potential client. The conversation moved on from boring market research to rather more interesting topics.

He asked me a very interesting question. Did I know what was the increase in average human lifespan from beginning to end of the Twentieth Century and why?

Well he explained that it was on average 30 years per person. And the two reasons for this he suggested were antibiotics and clean water.

So I was very interested to cast my beady eyes over a report published by the World Health Organisation, published yesterday, The UN-Water Global Analysis and Assessment of Sanitation and Drinking-Water. Granted an uninspiring title but from a worldwide health perspective one of great importance.

I thought I’d share some of the key finds. I don’t suggest you read the stuff WHO have produced because NGOs indulging in self-justification of their own existence in an unedifying sight!

WHO states “2.5 billion men, women and children around the world lack access to basic sanitation services. About 1 billion people continue to practice open defecation. An additional 748 million people do not have ready access to an improved source of drinking-water. And hundreds of millions of people live without clean water and soap to wash their hands, facilitating the spread of diarrhoeal disease, the second leading cause of death among children under five.


Many other water-borne diseases, such as cholera, typhoid and hepatitis, are prone to explosive outbreaks. Poor sanitation and hygiene can also lead to debilitating diseases affecting scores of people in the developing world, like intestinal worms, blinding trachoma and schistosomiasis.”

So we are looking at around one third of our planet’s population which is more than concerning. This is particularly the case in rural areas. They share “While a vast majority of people who lack access to basic sanitation live in rural areas, the bulk of financing continues to benefit urban residents.”

They go on “Investments in water and sanitation yield substantial benefits for human health and development. According (their) estimates, for every dollar invested in water and sanitation, there is a $4.3 return in the form of reduced healthcare costs for individuals and society. Millions of children can be saved from premature death and illness related to malnutrition and water-borne diseases. Adults can live longer and healthier lives”.

All of which may be true but my question is how can we deliver clean water and sanitation to fellow global citizens? It is a serious question and I would be keen to hear your answers in the comments section below.

Many thanks in advance!

Looking for parents of children with autism! Please help a student at The Irish Centre for Autism and Neurodevelopmental Research with a survey.


Over the last

Irish Centre for Autism and Neurodevelopmental Research

Irish Centre for Autism and Neurodevelopmental Research

year we have help promote a number of research projects run by the Irish Centre for Autism and Neurodevelopmental Research (ICAN) . Which is part of National University of Ireland.

A few days ago one of their PhD students, Arlene Mannion, contacted us to ask for some assistance from our readers with a survey she is running on sleep problems or gastrointestinal symptoms in children with autistic spectrum disorder (ASD).

It would be great if you could help her with the research as we think it may prove very useful to all the ASD community going forward.

Mannion writes “Does your child with autism spectrum disorder (ASD) experience sleep problems or gastrointestinal symptoms?

Some children with autism have both sleep problems and gastrointestinal symptoms, while other children have one of these issues or none at all. The Irish Centre for Autism and Neurodevelopmental Research (ICAN) in National University of Ireland, Galway is interested in hearing about your experiences with your child or adolescent aged 3 to 17 years with autism. We are interested in understanding how sleep problems and gastrointestinal symptoms affect both child and parent. Even if your child doesn’t have sleep or gastrointestinal problems, we can still learn a lot from your information on why some children have these issues and others do not. If you wish to participate, please use the link below.

https://docs.google.com/forms/d/1rdm3IrSWzZcrG14jezW1FjrjoF5T62zUH4cX26ecs2k/viewform?c=0&w=1

If you need any more information on the survey you can contact Ms Mannion at a.mannion3@nuigalway.ie.

Thanks very much in advance!


Poetry and Multiple Sclerosis – Michelle MacDiarmid shares a poem she wrote about her mother’s MS.


 Multiple Sclerosis  and poetry

Multiple Sclerosis and poetry

A couple of days ago Michelle MacDiarmid send us a copy of her brilliant poem about her mother’s journey with multiple sclerosis.

Ms MacDiarmid has very kindly given permission for us to share her poem with you.

“When my mam woke one day not feeling right,
So started the process of worry night after night.
And so too came a series of tests,
Ending with the dreaded diagnosis “I’m sorry it’s MS”.

I remember the weeks mam had overnight stays,
In hospital to find answers,
Those were long days.

We were not yet told why mam wasn’t well,
She put on a smile & laughed when she fell.

I remember the days I would see her in tears,
Heaven knows how she handled all of those fears.
She’d brush them aside not wanting us to see,
Not wanting us to worry about the things that might be.

As years went on we still didn’t know,
Until we noticed mam was getting that little bit slow.

She wanted to protect us by just getting on,
Protecting our childhood from things going wrong.

Looking back now I wish that I’d knew,
Maybe there’d have been things i’d be able to do.

I remember the day she sat us both down,
“I have something to tell you” she said with a frown.

MS is a disease of which many don’t know,
But it affects more than you think, maybe your friends or your foes.

Imagine if you can my mam said to me,
A life taken away where you’re no longer free.
Things folk take for granted will be no more,
Waking up each day with something else feeling sore.
To wake each day with so many worries,
Ones that actually matter and not just about money.

Time has gone on now and mam cannot walk,
Even sitting is a struggle; even having a talk.
Her eyesight has reduced so she’s partially blind,
In constant pain, each day is a grind.

I don’t think I’d have her strength if this happened to me,
Mam’s always there with a smile, a joke, and a hug or three.
She no longer feels bitter or angry or sad,
Those emotions have left her & now she feels glad.
She told me she feels a little bit of luck,
That her illness wasn’t too progressed until we were grown up.

I’m so proud of my mam for not giving up,
Times have been dark but she still acknowledges her luck.

Maybe we should all think when we’re having a grumble,
That really there are others whose lives should make us humble.

Don’t take freedom for granted, enjoy all aspects of life,
You never know what’s coming be it happiness or strife.

I had a fab childhood because mam hid her worries so well,
Now I know each day she was going through hell.
I thank my mam for always thinking of us,
When really it was you that deserved all the fuss. ”

One of the interesting things we have noticed is the number of people in the multiple sclerosis community who share the thoughts and feelings in verse. If you have written a poem about multiple sclerosis please feel free to share it in the comments section below or email to us at patienttalkblog@gmail.org and will will showcase in another post.

Many thanks in advance!


World COPD Day 2014 – what to do if you are diagnosed with chronic bronchitis or emphysema?


World COPD Day 2014

World COPD Day 2014

Today is World COPD Day 2014 which is organized by the Global Initiative for Chronic Obstructive Lung Disease or GOLD  .  You can find out more at their website here

For some background on the signs and symptoms of COPD (which stands for Chronic Obstructive Lung Disease ) check out one of our previous posts here.

In this blog we would like to focus a bit more on what you should do if you have been diagnosed with COPD (also called chronic bronchitis or emphysema). In fact GOLD have produced a very useful check list which we share below:-

a) Stop smoking!
b) Get a ‘flu shot.
c) Be prepared ! Plan your course of action if your breathing gets bad!
d) Keep the air at home as clean as possible! Try and open your windows!
e) Regular exercise and a health diet!
f) Go easy on yourself. Don’t push too much.

Do you have any other tips?

Please feel free to share in the comments section below.

Thanks in advance!


Anti-Bullying Week 2014 – Autism and Bullying – How can we stop bullying of people with learning disabilities?


Anti-Bullying Week 2014

Anti-Bullying Week 2014

As many readers will know this week sees us in Anti-Bullying Week 2014. While not, per se, a health issue it is , in fact, related closely to the objectives of the blog.

To explain , as you may know, I am the parent of an eight year old boy with autism. One of the things that worried us after his diagnosis was the idea that he would be bullied because of his autism.

In fact we have been very lucky. For the last couple of years he has been attending a ResourceBase unit for children with autism within the mainstream system. This means his fellow students in mainstream are aware of the nature of autism , take it in their stride, and so far neither her nor his friends in the ResourceBase has been on the receiving end of bullying. And , of course, we hope that it stays this way!

But that is , sadly, not true of so many people with learning disabilities. The aim of this blog is two-fold. Firstly to try and discover the extent of bullying of people with learning disabilities and, as importantly, to provide our readers with an opportunity to share how they dealt with such bullying.

Please use the comments section below to share your thoughts on the subject. You might want to think in terms of the following questions:-

a) What is your main learning disability?
b) Have you ever been bullied because of your learning of other disability?
c) Where did the bullying take place and in what context?
d) How was the bullying dealt with by you and any authorities?
e) What one piece of advice would you give to somebody who is being bullied?

Thanks very much in advance for sharing.  Please note that we are also very interested in the views of parents and caregivers on the subject!

For more information on Anti-Bullying Week 2014 please go to their website here.


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