Welcome to Trudy's Fund Raising page

- About Trudy -

Today Trudy Lawton is a 47 year old female who has suffered a Traumatic Brain Injury.

In 2002 Trudy was a fit and vibrant young women who was training to be a police woman.

In October that year she was struck down by brain haemorrhage. It presented as an excruciating pain which caused her to seek medical assistance. At the Medical Centre she was seen by a GP who could not find the cause and gave her pain medication. As Trudy was about to leave she collapsed in front of him.

She was flown by helicopter to A&E. A CAT scan revealed a large brain bleed. She was placed in an induced coma.

She was subsequently flown by helicopter to Wellington Hospital. Another CAT scan was completed. The result was the bleed had not increased. The Neurology team decided that they would not do anything and believed the bleeding had stopped and the blood in the brain would dissipate.

It was at Wellington Hospital that Trudy was diagnosed with a rare cerebral vascular disease known as Moyamoya.   It was so rare that only one member of the Neurology had heard about it.

After 3 days in an induced coma it was decided to take Trudy off her life support. They had great belief that Trudy could support her own life.

Trudy's recovery commenced. She would wake for short session. During this time only two visitors at a time were allowed.

Each time she woke she would recognise the voice of the people in the room. I say recognise as she was later diagnosed with a peripheral vision deficit. I don't believe she could see well at that point.

Each day was like Groundhog Day.

Trudy spent 12 days in Wellington before being flown back to Palmerston North where she spent another 44 days in rehab.

The day before Trudy was about to complete an Occupational Therapist driving assessment she failed a Peripheral Vision eye test. She had a left upper quadrant missing. There was nothing wrong with her eyes. It was the brain. Hence Trudy was not allowed to drive. She has undergone many more tests which she has failed.

Trudy was advised to take life easy and not get her blood pressure too high.

She was given large doses of pain killers and Asprin to thin her blood.

Trudy was in constant pain for 2 ½ years when we found Tom Nesser a Pain Psychologist.

Tom completed an EEGQ test that found that Trudy's brain was always switched on. That would explain her fatigue after a car trip to Wellington. She would have to rest for at least an hour. Basically everything that she saw was information overload for the brain. The brain processed it like a computer. The normal brain has the ability to filter all input. Something we take for granted. Trudy's brain could not.

Tom's treatment plan assisted with fixing this.

We read about a lady in Wellington who was diagnosed with Moyamoya Disease a year after Trudy.

This lady was very brave. She completed her degree at Victoria University. Unfortunately her son picked up the degree for her.

                                

As mentioned Moyamoya is a rare disease. We were told by the Wellington Neurology team there was only 1 in a million in New Zealand. We later found that was not correct.

After lots of searching a website Moyamoya.com appeared. Trudy built up the courage to post her story on this web site.

She received lots of comments from people overseas which scared her. We were told that to survive this she needed to have the surgery.

Stanford University in the USA had successfully completed many surgeries for Moyamoya patients.

We made contact with Stanford University Hospital. We sent them Trudy's medical records and MRI's.

We were sent back a quote for Trudy to have the surgery interventions. The quote was $340,000US.

While thinking of how to raise the funds to go to the USA we were contacted by a lady in the Taranaki.

She had a daughter with Moyamoya Disease. She gave us the name of Andrew Law a Neurosurgeon in Auckland. He specialised in Moyamoya Disease. He had more than 14 clients with Moyamoya Disease. http://www.neurosurgeon.co.nz/Index.htm .

In 2007 we met Andrew Law in Auckland. We were amazed as he was a NZ European from Palmerston North and had attended PNBHS.

Andrew was up front. He told us this was a progressive disease and Trudy should not expect to live to old age.   This was devastating news.

After an MRI Andrew says Trudy's condition was stable and did not require any medical intervention. He would monitor her.

With this information I asked Trudy where in the world she wanted to see. After a few weeks she says she would like to go to Jamaica. We began planning maybe our last big trip together.

After 7 months we were forced to see Andrew again. An MRI revealed Trudy's condition had deteriorated. The only option was to perform brain surgery. The procedure recommend was EDAS. Encephaloduroarteriosynangiosis to be correct.

In 2009 Trudy underwent bi lateral EDAS. One side in February and the other in June. Each surgery was five hours and it was very scary sitting waiting around.

The surgery was successful. Trudy began leading a normal life. She went to the gym 3 - 4 times a week and she would have her coffee fix each day. Trudy still suffered from fatigue and became fixated with sleeping tablets. They ruled her life. Trudy could not work due to fatigue. With fatigue came confusion, a very volatile combination.   We went on our trip to Jamaica in 2010.

In 2012 Trudy lost her mother and then in 2013 I lost my father. Life had just dealt us more pain and misery.

In April 2013 we visited Andrew Law. After an MRI he was delighted with the previous surgery and said that he could see no reason why Trudy should not live to old age. He also convinced her to stop taking sleeping tablets.

With this latest news we were planning another overseas trip in the near future.

In August 2013 one afternoon I finished work early and called to see if she would like a coffee up town. I knew as soon as she spoke she had another stroke. I rushed home and called 111.

Once again I kicked into action. Rallying the family as this may be it. We arrived at A&E. As you know life is not fast at A&E.

A CAT scan revealed another bleed. I contacted Andrew Law and he says he had been contacted by A&E. The approach was to use a passive treatment, meaning they would just monitor Trudy. Any surgical intervention was high risk due to her previous surgeries.

This was the correct treatment plan. The bleeding stopped by itself.

Trudy's had the symptoms of a left brain stroke, a droopy right face and no movement in the right side. She could not walk and all this was symptomatic of a Traumatic Brain Injury.

Trudy spent the next 44 days in the Star ward. She had to learn how to walk, eat left handed, shower and dress herself and walk.

Trudy communication was limited and she had to learn how to talk again. This has improved but she still has difficulty finding words. She has difficulty hearing words as well. We have developed techniques to assist her. eg writing things down as she can read.

Trudy suffers from chronic pain. This is managed by pain medication but the balance has still not being found.

Trudy's mobility is slow. She can walk unaided but has difficulty with steps and stepping up from the road to the footpath.

She has lost another visual field. This causes her to not see things down low on her right side. She bumps into sandwich boards if they are on her right. She just does not see them.

Trudy was assessed by a Neurologist which showed she had a 54% life style impairment.

Trudy cannot be left alone for long periods of time. She is capable of doing most things but requires assistance. She can do unsafe things without thinking. We have had to hire a person to be with Trudy for at least 4 hours while I work. Trudy is a very private person and it takes the right person to work with her.

I am a Sergeant at the Feilding Police Station. The NZ Police have been amazing. I had nine months paid off work. They did not pressure me and were very supportive.

We recently saw a 60 minute program on a controversial stroke treatment as per link below.

http://sixtyminutes.ninemsn.com.au/stories/8834224/reverse-stroke-the-controversial-and-incredible-new-therapy-for-stroke-patients

The treatment is controversial as the drug Etanercept is used for treating chronic arthritis.

Dr Tobernick's research shows that when a person has a stroke there is a chemical in the Brain TNF that has the similar properties as an inflammation. Etanercept works on clearing this inflammation.

His work is still to be sanctioned and tests need to be completed with patients given placebos. Some say it is a money grabbing treatment.

The program was very positive. We made contact with Dr Tobernick's clinic in Florida.

After a telephone conference they say Trudy is a good candidate for treatment. Her Moyamoya disease does not pose a risk.

We were told there were no guarantees and that 1 in 5 people do not respond to the treatment. The lady on 60 minutes is the only one out of 700 patients that has responded so well. We are aware there are side effects from using this medication.

They recommend two injections as we are travelling from New Zealand. The choice is ours. One should give improvement but two is preferable

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