A diagnosis of autism! What was your first reaction on hearing the diagnosis of autism?

Advice for autism parents
Advice for autism parents
When I started this blog a few years back I wrote a blog post describing our son’s autism diagnosis. You can read the story here.

In the five years which have passed so much has changed. Not always for the better.

But I still vividly recall the day of the diagnosis and the pain it caused. In fact it was the 70th anniversary of the German invasion of Poland if your interested. We got the diagnosis at around 11.30 in the morning. Again if you are interested.

My initial reaction was a bit of a surprise to me. Both my wife and I had expected it. In fact. looking back. I don’t suppose there was any other possible outcome. But hope springs eternal – as they say.

After the first few moments of bleak sadness my next reaction was anger. Not just at the way we were told. Though pretty inept I doubt it would have made a difference. It was as much the unfairness of it all. Why? Because in those days I really thought my son’s life was over before it had begun.

But it’s not. Not at all. Yes it is different sure and not always easy but we lead a full family life and John has developed in many ways.

But I still think about that day and wondered how typical I am.

So a couple of days ago I posted a question on our Facebook Page AutismTalk. The results were fascinating and I thought I would share some of them with you. The ones I’ve selected have been on the basis of being representative rather than anything else. Indeed at time of writing this post we have had over 320 comments.

It would be great if you would use the comments section below.

Jason was pretty relaxed “It wasn’t a big deal to me. I still love my daughter if she was autistic or not. Even though she is classified as special needs….i don’t see her that way. She is just Julie..my daughter…no more…no less. The world is a her doorstep!”

Another reader was similar to me “Broken.. Cried.. Blame my self… But he is still my little boy… And I’m proud of him.. Very proud of him….” said Silvia.

Angela shared ” Firstly it was relief…..not because my son has asd but because at least we had finally got some where and I knew I wasn’t going mad,….i had known from an early age that my son was autistic it has just taken a while to get anyone to listen…….but then the feelings of guilt,I couldn’t help feeling that it was my fault somehow….i still do get those feelings sometimes , but at least we can now fight for my son to get the correct help he needs…..i love my son with all my heart and wouldn’t change him for anything.”

” I held it together until I got in the car. Then quietly cried the hour drive home. My husband drove us in silence. We spent that day grieving normal, the loss of what we thought things should be like for our boy…only just 3 then. The next day we woke up ready to embrace everything with a positive and easy going attitude. We threw all expectations out the window. We accepted this challenge. We got educated, we embraced therapies, learned how to step inside him. Jonathan’s now 11. Doing great. He’s a happy, warm, loving, and brilliant boy. My gem ” said another reader.

Robert mentioned “Relief in the fact that I could tell family to back off that it wasn’t a discipline issues.”

Of course emotions are strong “I cried for like 2 hours in my car after my wife my son got back home . We went to the doc they told us she cried on the way home I ask God for stenght not to cry and be strong for her after we got home I told I had to return to work I got in my car and broke down and cried . I love my boy it more then 10 years for us to get pregnant . I never asked God why or have any bad feelings what I did tell God is that ok I love my boy and accept me with all my heart just please don’t let my do this on my own help me with your love if you do this with me I know I can see anything through . It been good my wife and are more like a team now with share all my son things therapies , doc visits were never alone on anything . There are the bad days really bad day but that’s why we’re a team if she feels she needs a brake or can’t go I’m like tag me I’m in ? But there are good day to and we both share them . He’s my boy ” I love you carlosmanuel I won’t change you for anything ”

Glorie told us “Relief in the fact that I could tell family to back off that it wasn’t a discipline issues.”

Not everyone was positive “Sad. Confused. Frustrated. Lost. Hopeless. I didn’t cry, I just developed severe anxiety and depression. I’m pretty sure I have no clue what I’m doing. God help us all.”

Pauline movingly said “pride and love and knowing i was right a mother knows her child best xxxx” and another said “My husband and I sat in our car in shock and said that no one would just slap a label on our son..we expected the same for him as our other son. We had to make adjustments over the years, it was not always easy, but he is now 21 and is an amazing young man.”

The view from people with ASD was interesting. Katheryn shares “Finally I have a reason why I was different and that I’m not alone ”

Anna was upbeat “My son and I heard the news together. He was not diagnosed (with Aspergers) until he was 17. We both looked at each other with that sudden dawning of understanding. Suddenly we knew the reason for all our struggles. We hugged and talked well into the night. And had many conversations about all of it.”

So what about you? What was your reaction?

Please share in the comments section below!

Pain and the Seasons – Which time of year is the worst for pain?

A tip for cooling down in the heat
A tip for cooling down in the heat
APRIL is the cruellest month, breeding
Lilacs out of the dead land, mixing
Memory and desire, stirring
Dull roots with spring rain.

Said TS Eliot at the opening of the Waste Land.

But is that true?

For many people with painful conditions the height of summer or the depths of winter are the worst times of the year for pain.

In fact there does seen to be a correlation between climate, temperature and pain levels. In fact one of the most popular post on the blog has been how to cool down in the summer.

But temperature change is not the only part of the equation.

One of the first things I was told, as a child , by my grandmother was that her rheumatoid arthritis enabled her to know when it was going to rain. Which would suggest humidity can also play a part.

The aim of this blog is to explore the whole area in a bit more detail.

Firstly it would be great if you could take the poll below. The question is “Looking back at the last year which season has been the most painful?” Secondly it would be fantastic if you could answer a few questions about pain and climate. These question are only a guide and we would love to hear from you about any part of your story you may think is of interest.

a) What is your main medical condition which causes pain?
b) What is the main change in weather which affects your pain levels?
c) How do you treat seasonally related pain?
d) Have you moved because of your pain levels? If not would you consider it?
e) Do you have any advice for somebody who has just been diagnosed with a painful medical condition such as multiple sclerosis, arthritis or fibromyalgia?

Thanks very much in advance.

Happy Australia Day to all those celebrating

Happy Australia Day to all our readers.

We thought be would take this opportunity to share some Australian Rock Art from Ubirr, Kakadu in the Northern Territory. We saw these Aboriginal paintings three years ago and were very impressed

Ubirr, Kakadu, Rock Art
Ubirr, Kakadu, Rock Art

Autism and animals. We are looking for parents of children with autism to help with some research for Warwickshire College

Autism and dogs
Autism and dogs
As you may know PatientTalk.Org has been interested in the use of animals as a therapy for people with Autism. You can check out a blog post I wrote on autism and service dogs here.

So were are delighted to be able to give some help to Jenna Lauder, a student at Warwickshire College, who is studying companion animals and the effect they have on autistic children. She needs the help with some research from parents of children with ASD.

Ms Lauder writes” My name is Jenna Lauder; I am currently a 3rd year student studying a BSc Hons in Animal Science and Health at Warwickshire College. This year I am undertaking a dissertation based on the subject of companion animals and the effect they have on autistic children. As part of my research, I am required to distribute a questionnaire.

I am looking for parents of children particularly between the ages of 4-11 who have a companion animal, but also would like those who do not have a companion animal to respond for an equal comparison.
It would be great if you have a few minutes to complete my anonymous online survey, which should take no more than 5 minutes.

Your time and contribution is much appreciated!

Please click on the following link if you DO have a pet: http://goo.gl/forms/rhBnfPujBz

Please click on the following link if you DO NOT have a pet: http://goo.gl/forms/TZoDF5Z5WE

Thyroid Awareness Month – 10 Questions to ask about your thyroid health.

January is Thyroid Awareness Month. We have covered one thyroid condition called Hashimoto’s thyroiditis in more detail here Please check the link out to find out more about the signs and symptoms of Hashimoto’s thyroiditis.

That being said it is not the only thyroid condition out there. Hypothyroidism and hyperthyroidism are both common conditions which we will be covering in future blogs for you.

Today, however, we thought it would be useful to share with you “10 Questions to ask about your thyroid health.” from the Excellent Thyroid Awareness site.

It would be great if you could use them next time you visit your Doctor. Oh and please do share.

10 questions to ask about your thyroid health
10 questions to ask about your thyroid health

World Leprosy Day – find out more about Leprosy and its impact on the planet. #BeatLeprosy

World Leprosy Day
World Leprosy Day
Tomorrow is World Leprosy Day

We thought this year we would share with our readers some facts and figures produced by the excellent Leprosy Mission in the UK.

  • Leprosy is a mildly-infectious disease caused by the bacillus Mycobacterium leprae (a relative of the tuberculosis or ‘TB’ germ).
  • Mycobacterium leprae multiplies very slowly and the incubation period of the disease is about five years. Symptoms can take as long as 20-years to appear.
  • Leprosy causes nerve damage and, if left untreated, leads to a loss of sensation in the hands and feet. This can lead to disability and, sometimes, the amputation of limbs.
  • Leprosy can damage nerves in the face causing problems with blinking, eventually leading to blindness.
  • Leprosy is not hereditary and it cannot be caught by touch.

  • It is most common in places of poverty where overcrowding and poor nutrition and housing allow people to become more susceptible to infection.
  • The last case of indigenous leprosy in the UK was diagnosed in 1798 and although it can no longer be contracted in this country, around 12 new cases are diagnosed in the UK each year.
  • Leprosy is curable with multidrug therapy (MDT), which was developed in the early 1980s.
  • Within one day of starting MDT there is no risk of the disease spreading to anyone else. Lack of education, however, means many people affected by leprosy are still stigmatised, even after they have been cured, especially if the disease has caused irreversible disabilities.
  • There are around three million people worldwide disabled as a result of the late treatment of leprosy.
  • Leprosy is commonly diagnosed in a person’s 20s or 30s. Six to eight per cent of new diagnoses, however, are in children aged 15 and under.
  • The most recent World Health Organisation figures state that in 2013 there were 215,557 new cases of leprosy diagnosed. That is approximately one every two minutes. More than half of these were found in India.

To help us promote the day please do share this page and the image we have used to illustrate this blog post!

Moebius Syndrome Awareness Day – please like and share to show your support and read our post to find out more.

Moebius Syndrome Awareness Day
Moebius Syndrome Awareness Day
Tomorrow (24th January) is Moebius Syndrome Awareness Day

So what is Moebius Syndrome?

Well according to The Many Faces of Moebius “Moebius Syndrome is an extremely rare congenital neurological disorder which is characterized by facial paralysis and the inability to move the eyes from side to side. Most people with Moebius Syndrome are born with complete facial paralysis and can’t close their eyes or show facial expressions. Limb and chest wall abnormalities often occur with the syndrome. Respiratory problems, speech and swallowing disorders, visual impairments, sensory integration dysfunction, sleep disorders and weak upper body strength may also be present.

People with Moebius Syndrome are of normal intelligence, although their lack of facial expression is often taken to be due to dullness or unfriendliness.

It is estimated that there are only between 5,000 to 10,000 cases of Moebius syndrome worldwide.

Last year’s Moebius Syndrome Awareness Day was a resounding success and saw participation from every continent on the planet – the main focus was to create awareness via the media, and dozens of news stories hit the headlines, wound up on the airwaves, and blasted off into cyberspace via various print, TV, radio and social media news publications!

Family, and the importance thereof in the lives of individuals who have Moebius syndrome is the focus of this year’s Awareness Day. “It is a tribute to the many families around the world who are often the unsung heroes of our lives” says Tim Smith, President of the Many Faces Of Moebius Syndrome, who himself has the condition.

“There is no substitute for a loving, supportive family whether that family is biological, or our worldwide Moebius Family. Knowing someone is there to support and fight for you when the going gets tough makes living with Moebius Syndrome a little easier” says Vicki McCarrell, President of the Moebius Syndrome Foundation.

Moebius Syndrome Awareness Day is held annually on the 24th of January, the birthdate of Professor Paul Julius Moebius, the doctor who first diagnosed the disorder in 1888.”

PatientTalk.Org – We’ve got a new look. What do you think?

A new look for PatientTalk.Org
A new look for PatientTalk.Org
Welcome to the new look PatientTalk.Org.

While still keeping you up to date with medical news and healthcare information we have decide after two years it was time for a facelift.

But being from a research background we thought we would find out what you think about the site. Some of the new site is under construction but we are keen to hear what you think about the new look and feel.

We would really appreciate it if you would share your opinions about the new site in the comments section below.

Good or bad we want to hear what you think about the new look blog.

Thanks very much in advance.

Tetralogy of Fallot Awareness. How one woman with Tetralogy of Fallot is set to compete in Special Olympic Competition

Special Olympics World Games Los Angeles 2015
Special Olympics World Games to take place at Los Angeles in 2015
Welcome to the first in our series of blog post preparing the way for the Special Olympics to be held in Los Angeles this year.

In this post we will be looking at the story of Deborah Bolinger – a Special Olympic competitor.

She was born on 31 December 1965 with Tetralogy of Fallot, a congenital heart defect where there are four abnormalities inside the heart. She has undergone various operations, including open heart surgery at Glenfield Hospital and is now set to compete in a Special Olympic Competition, run by the Riding for the Disabled Association (RDA).

At the age of two, Deborah had her first heart surgery in the United States. After moving to the UK aged nine, she had 12 hour heart surgery for total correction and now at 49 she is still in the care of Leicester’s Hospitals.

Due to complications and surgeries undertaken on her spine and right knee, Deborah does not have full mobility and has to walk with the aid of a walking stick.

In 2007, Deborah underwent a procedure to insert a new heart valve at Glenfield Hospital, following a period of ill health. Deborah’s dad, Malcolm Campion comments: “The support and care provided at Glenfield Hospital was superb.”

Malcolm explains: “In 2010 Deborah had a setback when her relationship with her partner broke down and as she has a learning disability, she didn’t cope well with it. She started to neglect herself and put on a lot of weight. This prevented her from doing the one thing she loved in life, riding horses.”

One morning Deborah was found by her Carer, short of breath and her colour was blue. She was rushed into hospital and stabilised, and put on medication for heart failure.

Following this incident Deborah decided to turn her life around and with regular check-ups and support from the staff at Glenfield and her family, she started to rebuild her life. After losing almost five stone in weight, Deborah returned to horse riding at the
Riding for the Disabled Centre in Scropton, Derbyshire.

Malcolm explains: “It was a long and challenging haul but her determination was amazing, and she wanted to prove to all the doctors at Glenfield that she could do it. She has always said that without the dedicated staff at Glenfield she would not be here today. Their support has been so important to Deborah; they have a laugh with her and always ask about her riding. To Deborah the doctors and nurses are her friends.”

In April 2014, Deborah returned to Glenfield for a new replacement heart valve. This time doctors were able to implant the new valve using a keyhole catheter technique rather than an open operation and Deborah was discharged from hospital the very next day. Since the procedure, Deborah is out of heart failure and no longer on needs to take anticoagulant medicines.

Malcolm continues: “We as both parents and carers for Deborah we are very proud at what she has achieved and despite all her setbacks we remain positive and optimistic about the future.
“Once again we would like to thank all the doctors and staff at Glenfield for all their care and continuing support. Should Deborah require any further surgery, we know she will be in the best place possible.”

Deborah’s heart specialist, Dr Aidan Bolger, said: “It is fantastic and inspiring what Deborah has achieved. We wish her the best of luck in the Special Olympic Competition.”

Multiple Sclerosis and the Future. Are you upbeat about the future for People with MS?

The future of multiple sclerosis
The future of multiple sclerosis
This year I will have been working in the patient information over for ten years. For those 10 years one of my major areas of interest and research has been the views of the multiple sclerosis community.

One thing I realised was that I know lots about the current situation (and a bunch of stuff about the past) but I have not explored what PwMS think about the future.

So January struck me as a good opportunity to start a conversation asking a very simple question. “Are you upbeat about the future for People with MS?”

There are two ways you can help. First it would be great if you could take the poll below. It asks the question – “Thinking about today are you positive or negative about the future for the multiple sclerosis community in general and yourself in particular?” Secondly please use the comments section to tell us a bit more about how you see the future for the MS community. Good or bad. Or maybe a bit of both.

Thanks I really look forward to reading you comments and ideas.

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