Stroke in the Top End by Nicole

I suffered multiple strokes in my cerebellum in October 2016 because of a vertebral artery dissection, I was 28 at the time.

We believe that the dissection was caused by neck manipulation during a Thai massage I received a week or so before the onset of my initial symptoms, but we can’t be sure. It was a month before I was given a diagnosis of stroke.

My son was 4 years old at the time, and I was fit and active, so stroke never crossed my mind. Unfortunately, it must have been the same at Emergency because I was sent home three times without treatment, they thought that I was suffering from migraines.

Because so much time had passed, there was not much that the hospital could do to treat my strokes other than give me aspirin and I was discharged the following day. I left hospital without a management plan, just some advice to take two weeks off work, avoid some types of exercise and attend follow up appointments with Neurology in due course.

I was petrified. I had a young child at home, no family support and my husband had his own business, which was booming, so he had little ability to stay home. My deficits are invisible, so I found it hard to explain to people that I needed help, and without a discharge plan, had no idea where to go or what assessments I needed.

I found it hard to cope with my chronic fatigue and pain, as well as the changes to my balance, coordination and personality. Also, my emotions were all over the place. It was terrifying as I had no information about the challenges that I would face, if I would recover or where to get help. It was tough on my husband too, he didn’t know how to help me.

I went back to full time work four weeks after my diagnosis and was told I would be fine. I managed to squeeze in three private acupuncture appointments for my neck and shoulder, and the Neurology Team started me on medication for my migraines and sleeping issues. I did not seek help from a GP or another health professional during this time. I muddled along like this for eight months before falling pregnant with my daughter. It was then that my dentist referred me to an excellent GP and things started to improve. I honestly don’t know what I would have done if this hadn’t happened. This GP changed the direction of my recovery and my life.

My new GP referred me to a Rehabilitation Specialist at the new Palmerston Regional Hospital. Although I did not get to see this doctor until two years after my strokes, he was amazing and very understanding. He recently referred me for an assessment with a visiting Neuropsychologist. The assessment took place on 26 June 2019. I am currently awaiting the report.

He also organised appointments with some allied health professionals including a psychologist and a physiotherapist and linked me into support services including Beyond Blue and the Stroke Foundation. Finally, I was getting the help and direction that I needed.

Now I feel that is time to give back. I don’t want other people to face stroke recovery alone, and I know that peer relationships are a huge part of that. So I have started an online stroke support group for people in the NT and northern WA.

We know from the Stroke Foundation’s Audit Report regional Australians are 19 percent more likely to suffer a stroke, are less likely to receive specialised treatment in a stroke unit and are also more likely to die or be left with a significant disability because of stroke.

I have learned a great deal from my strokes and ongoing recovery, I want to share what I have learned with survivors in the Top End.