Stroke is one of Australia’s biggest killers and a leading cause of disability. We are proud to support the Stroke Foundation as our charity of choice and want to share these 3 stores from Stroke Survivors with you.
My name is Emma, and I had just turned 29 and I had a stroke.
I had just got home from work and served my children their dinner. I sat down to watch television and noticed there were spots in my vision, just like the spots you get from staring at the sun or light. I thought to myself that it was slightly strange, but I was convinced it would go away at any second. When I realised it wasn’t going away I said to myself “this is definitely strange”. I hadn’t been looking at any light and it seemed to be getting worse, and it began to annoy me that I couldn’t see all of the television – I was even annoyed that I was missing a good part.
It suddenly dawned on me that it wasn’t normal, I got worried and called ‘13 HEALTH’ [the Queensland Health advice line], to ask what it could be. I was torn between thinking it’s nothing and thinking something is seriously wrong. As I was speaking to the nurse I noticed my hand feeling strange and told her – I was still holding onto the belief that I thought it was just mind over matter – and said “I’m fine”. The nurse said straight away “I’m connecting to an ambulance – just stay on the line”. I was still telling her “I’m fine, I don’t need an ambulance” and still wondering about my vision. I was told sternly “no those symptoms aren’t good”. The ambulance team spoke to me asking me to give my details. I gave them, but I couldn’t remember my phone number. I knew this was strange, but thought maybe I’m a bit panicky with everything going on. My only focus after that was remaining calm – I didn’t want to alarm my children or for them to see the ambulance. I didn’t want them to be anxious, especially as my eldest son, as he is familiar with tragedy – I didn’t want him ‘freaking out’. I went out to the garage to wait for the ambulance to arrive. When we heard sirens in the distance I quickly said goodbye to their dad, and said “I will be back shortly” I was still thinking and believing I was fine. As the ambulance approached, I stood on the drive-way and began to walk the short distance to the end of the drive-way. I took a few steps and as I looked down I noticed I was walking diagonally. As I looked up I saw one ambulance officer coming out of the slide door of the ambulance and another one jumping out of the front. Then I collapsed. I was confused, I remembered the officer grabbing me and yelling to the others “I think this is our patient”. I remember feeling strange, like an out-of-body feeling. It was strange as I knew what was going on, but at the same time I was unable to construct the words to communicate. It’s like I couldn’t control anything, I felt like my intelligence and thoughts had been robbed. I remember thinking they must think I’m normally like this because they don’t know me.
When I woke up in hospital I realised I couldn’t use my arm and my speech sounded different. I was petrified. The doctors weren’t telling me much, although they talked about stroke and used all sorts of words I didn’t understand, they talked amongst themselves. The doctors told me they were waiting to speak to the specialist neurologist and asked me if I had my family coming? They would talk to me soon. I still was thinking it would be nothing serious. I found the MRI scan, as it was next to my bed. I had a look and found it said ‘confirmed: CVA’. I thought yay, it’s not a stroke. It is something else and probably nothing bad. Little did I know that CVA actually meant stroke! The medical team came back with a specialist doctor and explained to me that I had a stroke and where in my brain I had had it. They gave me some resources, and talked to me about the medication they had given the night before. Medication that I’m now on for life. I was in total shock. I asked if I will see properly again and get movement in my arm back. The doctors explained they were unsure and you can’t tell with a brain injury. You have to wait and time will tell. If it starts to improve that means it is more likely to be able to make a full or near full recovery. They said I may never be back to 100 percent. Words can’t describe that sinking and heart aching feeling. I felt so sad, and sorry, as the next day was my Dad’s birthday – he would have to hear this news on his special day. I was given further tests to find a cause, and they found that a blood clot had gone the wrong way from a hole in my heart into my brain. I continued with rehab with the help and support of my stroke nurse and team, and at first I had little hope. Then I began to learn to do things with my left hand and it was my son and daughter that were the biggest heroes. They would encourage me to colour and draw with them to ‘wake up mummy’s hand’, as we’d explained to my five year-old, that my hand was just sleeping. Over time, dedication and hard work, it got better and better; improving strength – and I now pretty much have it completely back.
I find the biggest struggle in my day-to-day life is the tiredness and my memory loss. It’s not the ‘it’s been a tough week at work’ tiredness. Nor the have a glass of wine to ‘get on with it’ or the ‘have a strong coffee and you’ve got this’. And you can’t fix it with an attitude of no-one will know I’m stressed. Nope, this tiredness comes on suddenly, where ever you are, and literally, completely wipes you out.
The feeling makes ordinary things difficult, if not impossible to do. Simple things like writing or having a conversation; deep thinking and any intelligent thinking required at work is – impossible.
I feel like I’m trapped inside my own head, and it is entirely exhausting. It’s nonnegotiable and utterly unshakeable. I want to retreat away from society in fear of people not understanding. It must be difficult for people to understand when looking at me, you can’t see the cause it is hidden. You can’t see the damage to my brain, it is not self-evident when I’m doing something and literally forget what I am doing, or why I am there or what is happening. Doctors call it cognitive fatigue and tell me there is no treatment or cure.
Four weeks after my major stroke, I had a minor stroke caused by remnants of clotting from the previous stroke and a seizure. Then came a lot more testing, an increase of medications, and heightened emotions. Doctors keep telling me how lucky I am and how important it was that I got to the hospital so early. I received thrombolysis [clot busting] treatment. They described the procedure used to break-down the clot to prevent further damage. I educated myself and found out more about FAST. Why speed and time is so important, as well as constantly being reminded that ‘you’re so young to have a stroke’ by everyone.
I learned that stroke one of Australia’s biggest killers, it kills more women than breast cancer, and more men than prostate cancer! I am so grateful to the ambulance officers, paramedics, 13Health, hospital staff and the stroke rehabilitation teams – I now realise I am truly “lucky in an unlucky way”.
I was a forty-four year old busy mother of two teenagers when I suffered a stroke
– Mandy Bowler.
Unfortunately at that time I was also a heavy smoker. I knew the signs of a stroke from seeing the FAST [Stroke Foundation signs of stroke] advertisement years before my stroke. I was also the first person on the scene when a customer where I work was having a stroke – only about a month before mine. The customer was an elderly lady and she showed all the classic signs of stroke; her life was saved by our quick thinking. When I had my stroke, I was counting the money from one of the registers (I work at store), I noticed that when I was flicking the money it kept dropping out of my hand. I was with a very young checkout operator and when I went to speak to her my words came out in a jumble. She just kept looking at me strangely. It’s at this moment I knew what was happening and that I had to get to the front of the store to get some help. When I got to the front of the store it was only ten minutes before closing, so everyone was busy. I sat on a small stool and tried to attract someone’s attention – I was struggling to move or speak.
Finally a fellow staff member noticed me sitting there. I was the service supervisor in charge of all the staff, I should have been helping them close up. The staff member came over and asked if I was ok? I shook my head – I couldn’t speak. She asked again, I again shook my head, I was asked if I wanted her to call someone. I put my left hand up and twirled my finger in the air, like an emergency alarm. Although my movements were confusing I was asked if I needed an ambulance – YES! I gave a big thumbs up. Paramedics arrived soon after, I knew the team being from a very small country town. The paramedics took me to the local hospital and asked if they had tPA (clot busting treatment)? Our hospital didn’t. The paramedic wheeled me straight back out the door and back on the ambulance, saying to me “get ready for a quick ride!” Quick indeed – within sixty minutes I was being wheeled into emergency at a major Melbourne hospital, in time to receive lifesaving clot busting medication. Unfortunately, I have had a few clots over the years from having been a heavy smoker and having what my haematologist referred to as ‘sticky blood’.
After my stroke I have had some difficulties reading, especially a book. It is a shame, as I was an avid reader, now I have no interest. Sometimes late at night I slur my words if I am tired, I suffered from depression, mood changes, a very short temper and memory issues. But on the up side, I have never touched a cigarette again!
Since my stroke I try to help others in my town. I share tips about the practical things after stroke – stuff you don’t get told. Practical things like dealing with menstruation and personal hygiene. It always surprises people how the simple things can get really complicated – everyday stuff that others don’t have to think about. Nothing is off limits with me, people can ask whatever they want. I even explain that if you have arm paralysis and you can’t wipe your own bottom, if you feel you haven’t wiped properly, just have a quick shower. Dignity can be lost pretty quickly after stroke and it can be humiliating. Family and partners of stroke patients are in shock after a stroke, everyone’s lives are turned upside down – it’s so sudden. I remind them that their loved one may understand everything they’re saying but they sometimes can’t communicate back.
They’re still there listening so please treat them normally. Tell them the news, talk about family, tell them sports scores, don’t hide anything and be open about everything. I had fantastic staff look after me, although I did have one nurse who when she spoke to me, talked very loudly. I wanted to say “I’m not deaf – I’ve had a stroke, I’m not stupid.” I feel extremely lucky, I have the most amazing husband who is my hero! He was amazing after my stroke. He never let me down, and he was there for the highs and the lows. I realise I wasn’t always easy, but he found ways to still be a family – our family.
As I was having trouble with short term memory my husband made a board so everyone in the family wrote where they were going, and what they were doing for the week. As my kids were teens it saved me asking the same things ten times a day, and have them roll their eyes each time I asked! In our walk in robe he put a set of drawers, and numbered them one to six. 1. Undies, 2. Bra. 3. Leggings. I couldn’t dress myself but I felt more in control, I had trouble working out what and where everything was, but our numbering system made it easier. I count my lucky stars every day, we tell people about the signs of stroke (FAST) as often as we can – hopefully we can save another person’s life.
Peter and Maggie’s Story.
As told by Maggie
In May 2013 my partner and I were enjoying our four month of our caravan trip around Australia, we had just arrived in Murray Bridge after crossing the Nullarbor. I woke one morning to find that my partner Peter couldn’t speak and was looking very confused. I didn’t know the site number nor the name of the caravan park we were staying so I rang my son’s fiancée as they lived close by, and told her I needed to get Peter to hospital right away. Luckily, she was there within 10 minutes – the longest 10 minutes in my life. Peter, at that time, was still able to walk leaning on me to stay upright and by the time we arrived at the Murray Bridge Hospital he was dragging his right leg. I rang the emergency bell and wouldn’t let go until someone came, a nurse did eventually come and told us they were busy with someone else. I told her this was urgent and explained the situation, within five minutes a doctor was there and had ordered an urgent CT scan of Peter’s brain. The results were not good, Peter had a life threatening bleed so the treating doctor rang a hospital in Adelaide who sent a chopper [helicopter] to take him to the hospital there. By the time I drove to Adelaide less than two hours later Peter was in intensive care on life support. The hospital also told us it didn’t look good, by this time Peter was paralysed down the whole of his right side. He had a probe in his head to keep an eye on the pressure as they may have had to open his skull if the pressure didn’t subside. Luckily it did after the third day in intensive care. On the fifth day, Peter was moved to a stroke unit.
Peter still didn’t have any feeling in his right side so we started stretching and massaging his right leg and arm, the doctors weren’t sure whether he would ever regain use of them. We would
stretch and massage Peter’s right arm and leg every 30 minutes. Later, I would also put coins on the bed table and Peter would try and pick them up. When Peter was cleared to eat soft foods I would fill a spoon with the yoghurt and put it in Peter’s left hand and help guide it to his mouth. Once Peter was able to master this, I encouraged him to try and fill the spoon to feed himself. We never lost our sense of humour and that has been a blessing. The first time Peter drank some water I said “cheers” and Peter said in a barely audible voice “Big Ears” – we laughed and laughed.
Peter continued to slowly improve, and we celebrated the day when Peter could have a cappuccino, he was still unable to speak but he was aware of his surroundings.
After a time, the couple were flown home to Perth to continue Peter’s treatment. Back in Perth – and still in hospital – Peter slowly started to learn to stand and was allowed to sit in a chair; this would tire him if left for too long. Peter was soon transferred to a rehabilitation hospital and remained here for three weeks.
When Peter got home he continued his rehabilitation. This was when Peter learnt to answer a phone again, and all daily things we take for granted. The neurologist kept saying how amazed he was at Peter’s condition considering the severity of his stroke.
We were told that slowly over time the other part of his brain would take over for the area that was damaged, so we decided to build bridges [over the damaged areas] ourselves. I went out and bought books that young children use to learn to write between the lines – it felt like Peter was back at school in first grade. I bought Peter easy books to read and once he mastered them he went on to reading novels with simple storylines, as he would have trouble trying to remember the all characters. Now he’s reading books on Gallipoli and history books on Rockingham. Peter has had to re-learn how to walk, talk, answer the phone, use the computer, eat, drink and use money – everyday things we all take for granted. Peter doesn’t drive as he had one seizure and prefers for me to drive. Peter continues to suffer from fatigue and he has a nap during the day – it’s a small price to pay for what could have been. Peter doesn’t have the strength in his right arm/hand, but that’s ok. There are times he has to search for a word, and just when I don’t think he could improve any more I notice something else and I silently put another ‘tick’ on his progress in my mind. I am very proud of the progress that Peter has made, I often think to myself about how surprised his neurologist was that he survived such a deadly stroke – Peter’s survival is a miracle. The bleed was so big that ‘by right’ he should have died or at least have a permanent disability. I truly believe that he is doing well because I got him to the hospital within 30 minutes.
Stroke kills more women than breast cancer and more men then prostate cancer. In 2017 Australia will experience more than 55,000 and there are more than 470,000 people living with the effects of stroke. With your support the Stroke Foundation will partner with the community to raise the awareness and work to prevent, treat and beat stroke.
Phone: 1300 194 196