60 Minutes blog

Liz Hayes: Wiped Clean

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There have been times when I’ve woken in the middle of the night in my hotel room somewhere in the world and had no idea where I am.

In fact it’s taken me a minute or two to figure it out.

It might have been jet lag, but trust me not knowing where you are, if only fleetingly, can be quite alarming.

So imagine what it must be like to wake up every day in your own home and not recognise anything….not the room or the clothes you’re wearing, not even your partner or your children.

But that’s what happened to Nicole Caird and Claire Robertson, both of whom have been struck down by Herpes Simplex Encephalitis, an inflammation of the brain caused by the common cold sore virus.

I didn’t know this, but apparently many of us carry the virus and plenty of us don’t know, especially if you’ve never had a cold sore.

But instead of making itself known as a sore on the lip when the body is under stress, the virus can attack the brain.

And when that occurs, the result can be catastrophic.

For Nicole and Claire it’s been a frightening and frustrating time. Their intellect and memory of so many other things are intact. .. even telephone numbers.

But their life memories before the illness have largely been erased.

And Claire has lost all ability to recognise faces, even her own. There have been times that a mirror has confused and unsettled her.

When we visited we all wore name tags. And apart from our Australian accents it helped Claire enormously that our cameraman Mark Munro had banged his nose and was sporting a large band aid. All were memory clues for Claire who would regularly forget why these strangers were in her house.

Family and friends of Claire and Nicole have also struggled with what’s happened, and in particular their children.

For them, actually for everyone, it’s like a death. The mother, the wife, the friend of before is gone, and now there’s a new person in the house.

And for Nicole and Claire it’s the same.

You can only imagine what it must be like when so little of your life, the home you live in, including those in it, are all strangers too.

Their lives are now based on trust. Trust that everything they’re being told is true.

This would be an incredibly sad and distressing story if it weren’t for the determination both Nicole and Claire have to get back their lives, and the love and support given them by their families.

These are people I will never forget.

User comments
Thank you so much for airing this. I had HSV Encephalitis in 2007 and it really changed my life. THe headaches were incredible and being in hospital was awful but the worst thing is the memory loss afterwards. I am in no way as bad as the people in the video but friends often comment on my memory loss and some have been very angry with me when I've forgotten things. Simply because they didn't understand what happened to me. I've sent the link of this video to everyone I know... I never realised so many people were affected by it. I've always felt so isolated. Thank you so much!!!
This is such a sad story of these women who suffer with memory loss. I can't imagine how awful it must be for their husbands and children. One of the wonderful things about sharing memories is the spontaneity of sharing them with your loved ones. It brings me to tears watching Nicole especially, not know what her virtual existence is.
5 years ago my mother was the only person with this illness in Australia. It took doctors 4 months to figure out what was wrong, a very rare illness called Autoimmune Limbic Encephalitis which was confirmed by testing her antibodies and sending them to Oxford University, where it has been researched. My mothers symptoms are exactly like Nicole’s- extreme memory loss (primarily short term memory loss) and massive confusion affecting her cognitive abilities. But she never forgot who I was. I first heard about Nicole on 9 news last year, and got in touch with her husband and advised him to see the Head of Neurology at RBH Brisbane. Because after 20 months of trying a series of treatments, they gave my mum a treatment that made her better- the same as she was before the illness struck her down. Her memory was restored almost instantly and she has recovered almost 100%. I wanted to re-iterate to Nicole’s family there is hope. If my mum can get better, so can she.
I WATCHED THIS EPISODE AS I WAS GOING THROUGH SOMETHING SIMILAR MYSELF AS I AM SUFFERING FROM DEPERSONALIZATION. FOR ME TO REMEMBER THINGS IS A BONUS BUT NOT TO REMEMBER ANYTHING AT ALL IS SO DISHEARTENING. I ONLY HOPE THAT THERE IS SOME SORT OF CURE FOR THIS, AS DEPERSONALIZATION MYSELF I DONT RECOGNISE MYSELF AND THIS IS BAD ENOUGH. IF ONLY PEOPLE KNEW WHAT ITS LIKE TO LIVE LIKE THIS, AS I HAVE BEEN THERE AND DIDNT KNOW THE HUMAN BRAIN COULD BE SO CRUEL, I WISH BOTH LADIES THE BEST OF LUCK.
16 years ago I was in a medically induced coma with under 1% chance of survival, my Doctor tripled my medication and I fought hard. They said I'd need 24 x 7 care. 3 weeks later I slowly walked from hospital and I had to relearn everything. Everyday I'd say "Encephalitis didn't kill me so Nothing is going to stop me". I slowly put my life back together, piece by piece. Like an actress, I had read the script and now had to play the part of myself. You feel alone and lost. I had issues with memory, balance, vision and hearing. I remember sitting at the table with a pen in my hand wondering how to make it write. I'm good with numbers so I'd walk my kids to school by counting the steps and corners then reverse them to get home. From having no short term memory, I learnt to use all my senses and analytical abilities to reach my goals. My Doctors still marvel at my full recovery and career achievements. It's been hard but I had my goal to be 100% and I wasn't giving up !
Hi, On Nov 15, 2010 I came to in my bed at around 3am facing two paramedics and my husband. I had just come around from a seizure that lasted about 15mins, my first words were "why is my father here", I thought my husband was my dad........that night I was in a small regional hospital undergoing numerous tests to work out why I had the seizure, my memory was shot and I was incredibly tired. At the end of the week the diagnosis was viral encaephilits caused by herpes simplex virus 2!! Always had cold sores ever since i was a child, the virus lay dormant in the base of my spine and then attacked the brain, it was very traumatic and even five months later i am on oral medication after a month of intraveneous drips plus still tired and my memory is certainly not the same. they said it was one in a million and really i am one of the lucky ones.....it is so sad for those other ladies, I still have my life but it is forever changed. thanks for the chance to talk about it - karen
Setting aside but not down playing the recent tragedies occuring across the world,your feature Wiped Clean was heart rendering to say the very least.The look of anguish and the need for confirmation on the faces of these young woman mirrored their torment.We can only hope that small steps of recovery assist in restoring some of their lost life.
Thank you for your story raising the awareness of E. I had E 3 years ago and and feel the need to mention that the initial treatment for E is very simple, but is often delayed unnecessarily because of the rarety of the disease. The earlier the treatment, the better the outcome. Outcomes do vary greatly, from death (at quite high rates) to almost full recovery. My spelling, noun recollection and memory aren't what they used to be, and every day I wonder how different my life might be if I wasn't misdiagnosed for 2 days by a gp and an emergency department at a hospital. Inspire.com has a great section for those who experience E - it has about 1,000 paticipants from around the world, and misdiagnosis is a common talking point.
My sister Suzanne contracted HSE1 whilst on holiday in Thailand in August 2008. She was a very fit 47 year old who had never had a serious illness in her life. For several weeks she lay in a Bangkok hospital unaware of what had happened until she was stabilised to be repatriated to Adelaide. For the next 20 months she under went intensive therapy at the Brain Injury Unit at the RAH Hampstead. During this time she amazed the medical staff with her steady improvement to where in May 2010 she moved out to live independently in her own home with the assistance of family and carers. Unlike the two ladies Suzanne has retained much of her old memories. She has however no memory of her time in Thailand or the weeks she spent in the RAH. Her impairment from this devastating illness is physical as well as mental. This once very fit women now relies on a walker or cane to get about and has difficulty remembering names of people and items.
I was one of the lucky ones I only lost 4 days worth of memories when the virus attached itself to my brain 18 months ago. I am grateful every day.

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