"I'm constantly in fear of having a stroke" ~ Lewis Black

When you have a stroke, whether it's ischesmic (a clot stops blood supply throughout the brain) or haemorrhagic (blood leaks throughout the brain tissue), makes a very big difference to you about how you will continue to live. For me, my stroke affected my frontal lobe and for much of my early hospital days was playing games with my speech. It has taken me a year to really think about what I am saying and remember most words. Sometimes, when I am trying to talk - especially when I am tired - I miss words, forget them and can't find them.

Recently I joined a new website, Enable Me, set up by the Stroke Foundation. There are goals in this website which I can set for myself. In the "Body mind after stroke" there are brain and cognitive, exercise, fatigue, personality changes, speech language, and many more. So many of these relate to me. The "My life after stroke" page gives suggestions, which, for me, includes food and nutrition, organising my life and rehabilitation.

This morning I sat down with Enable Me and started to set my own goals. This website is not particularly easy, even for me, but the end of setting a goal gives it back to me to watch. So far, in my last year, I haven't seen anything like this, even though I have tried something before I simply forget it. It's not in my diary.

Yesterday I re-found the Moreton Bay Council page for Older and Bolder. Yes, I had seen this before - but I'd forgotten it. Very frustrating for me! Earlier this year I'd done some stuff which I thought was excellent, so to re-find the brochure for the next few months encouraged me to look and find anything I wanted to do. I found a week of exercise at PCYC for free, which I have joined.

It's the week that Stroke Foundation has advertised as the National Stroke Week - 14th to 20th September. That week I will be exercising to improve my body after my stroke because of the goal I have set in Enable Me, and the event I have found at PCYC. Perhaps this stuff should cheer me up!

My Enable Me goals include making sure I keep my diary full with anything I am doing - and check it before I double-schedule anything! I have been running my diary (in my phone) at least since I moved to Moreton Bay area, but there have been a few times when I hadn't looked at it when I should have, so had either double-scheduled or just missed something. If I follow the Enable Me goals online maybe I won't do that!

I now have involvement with STEPS, Aphasia, Stroke Foundation, Synapse and, of course, BASA (please don't ask me to tell you what each name mean - look them up!). This involvement is starting to feel very good for me. After having my own article printed in the local Redcliffe newspaper recently, I am now getting my own story printed in the Synapse Bridge magazine. I am attending meetings with STEPS and Synapse. I have been invited to an activity run by CBRT (my former rehabilitation team) for the National Stroke Week. I have finished Leader training with STEPS and will soon co-lead training up my area.

All of this is far different than my (paid) work which I now don't do, but I believe that eventually I might be recovered enough to do something that I will be paid for. Now though, thanks to Enable Me, I can move ahead with my future. It won't actually "fix" me, but I think I can learn from it.

Lewis Black's quote was set up as the heading for my post this month. After my first stroke I live with my own constant fear, because I know that a stroke can get just about anyone.

If you have had a stroke, I hope you are living your best future.  

The secret of man’s being is not only to live, but to have something to live for. ~ Fyodor Mikhailovich Dostoyevsky

There are around 2% of people in Australia who have brain aneurysms. Did you know that? 

Throughout Australia it’s shown in statistics and website information pages that death as a result of ruptured brain aneurysms can be up to 20%. For those who survive because of a very good neurosurgeon, this can still be extremely scary. How many will fully recover, get back to their previous life, just get on with their future the same as they would have? How many wouldn’t completely recover?

The website for Macquarie University Hospital says that it is “uncommon to diagnose an aneurysm before it has ruptured and most people with aneurysms are unaware that they have an aneurysm until it bursts.” That was what happened to me two years ago – I was totally unaware of what was playing around in my brain when my first aneurysm was found in a CT scan which was not directed at aneurysms.

During my surgery, 293 days after CT’d, I had some heart problems and a stroke in my brain. It seems this is very unusual result at a neurosurgeon’s operating theatre. How many other people in this country had the same issues that I had?

Our brain aneurysm Facebook, Brain Aneurysm Support Australia, only has around 830 supporters. How many is this of actual aneurysms? According to Macquarie University Hospital, in Australia there are “more than 1,600 aneurysms rupture each year.” How many people, either BASA or any other groups throughout Australia, are there because of an active aneurysm, whether fixed or not yet? How many are there because they were – so luckily – found to have an aneurysm in their head? How many are fixed properly?

Some of the personal stories (other countries, not here unfortunately) agree that they didn’t want to give any information about their aneurysm, yet after their operation they “see the light” and talk about themselves and what happened. For me, this is essential – aneurysms exist and must be talked about. This is pretty much what we do every day on BASA. Brain Aneurysm Support.

I have written (almost finished) a book called Aneurysms with Aphorisms, which is very similar to this blog, but right now I don’t have any confidence that it will get printed and people will read it and learn from it. Personally I believe that every person who has had problems because of their aneurysm should write about it if they can. Should publish about it. Should have a website about it.

And every person in the Australian population who has a very high, very comfortable income, should help these survivors to pass the information onto everyone else in this country.

Information about brain aneurysms is essential for you to know. Start with Macquarie University Hospital, move on to Brain Foundation who support brain aneurysms in amongst so much involving the brain, find a neurosurgeon in your area (I’ve put Dr Jason Wenderoth in here as he is a supporter in BASA), and find out who you can contact for support and care.

And then help me to get my book published and buy it!!!

Things are never so bad they can't be made worse. ~ Humphrey Bogart

This morning I had a headache. It was worse than I have had for a long time, but I still didn’t think it would affect my aneurysm – my second one sitting in my brain.

Many years ago – not too long after I’d been going out with my second husband – I had to call off a sexual intimacy because an orgasm had given me the worse headache I had ever had. Now that I know that this sort of thing was the ‘thunderclap’ which lead into brain aneurysm, I suspect that, even so many years ago, I had had a small haemorrhage that day but I’d never known about it.

Since the hospital in April last year, after my op and stroke, I haven’t really had a headache since then. Today it’s uncool, but I still don’t think it will affect my aneurysm. Why? Because if it does affect my aneurysm I would rather want to die than go back into the hospital for a second aneurysm operation and possibly another stroke which might just make me completely invalid.

This is a weird thought, yes I know that, but in the last year I have done an about-face for aneurysm operations unless every neurosurgeon will operate on every person who are CT’d with an aneurysm, straight after that happens. I had to wait 293 days. I don’t believe I would ever have had a stroke. If I end up in brain aneurysm surgery and have another stroke, a very bad stroke, I would rather die than be left invalid.

Sparky Henderson said: “People who live in the past generally are afraid to compete in the present.” He thought longer, but these words dug into me. I live alone and have a long, long few hours every day thinking about what I do like, and I think I live in my own past, my childhood and much more. So many years I wish to forget, but I can’t. I have relived the memories. I remember so many things from my old past, when things from my present and very near past I forget.

I saw a different quote which says “I smile and act like nothing is wrong; sometimes it’s called dealing with shit and staying strong.” This used to be me, for most of my life, until I ended up in hospital. I had never planned that, but neuro managed to talk me into signing the elective form and kept me waiting for 293 days. I’ve re-done that quote because it sure reflected me.

I drafted a brochure a few weeks ago, with the intention to print of thousands and travel all around Australia and hand them out and talk to heaps of people, but I know that won’t happen. No money. This life is very sad. Maybe not for everyone who has been through BA, but there are a lot like me.

With my headache and no future, I can just wish you all your own future. I hope you have your family and friends and are not entirely alone. I hope you are all getting better without a headache or feeling so cold.

Like Humphrey Bogart (Rick Blaine in Casablanca) said, "Here's looking at you, kid." Have a lovely week if you can.

Life begins on the other side of despair. ~ Jean Paul Sartre

Sometimes I really feel this. Recently I went down to my worst depression (see my Whacksworks blogs from July - first and second) but I have had some wonderful recovery from that in the last week. I was talking okay before I went downhill, and I'm now on my way okay again.

I wrote back in June about the groups I have become involved with.  These are very good for your life, even if you only go there on your own rather than with any of your family. Fairly recently I had been in touch with Synapse and I get their magazine. In volume 19 for June they have in their magazine and on their website a lot of information about Bang on a Beanie. Today I went into town on the train and caught a bus in Adelaide St and went to Synapse in West End to buy a beanie. These hats are fundraisers for the Brain Injury Awareness week which will be country-wide between 17-23 August this year. Every single person in any of the groups I have mentioned - BASA, Aphasia, STEPS, Brain Foundation, Stroke Foundation, Synapse - and any other group which supports brain injuries, this week is for YOU!

 Synapse had an old magazine in their office, Volume 8 from September 2012, which had some articles in side columns that I believe give so much information that every single person should learn from. The first one, Brain Injury, talks about the devastating impact to an ABI sufferer. The second one looks at Coping Strategies. At the start it says "A brain injury can be likened to a drop of water, as the effects radiate outward to families, friends, the workplace, the local community and even the nation". So true! But will this ever be believed by people you might meet who have no idea what a brain injury is like? Do they know anything about cerebral aneurysms, brain tumours, autism, narcolepsy, stroke.... or any of the other 400 illnesses which are included in the USA National Institute of Neurological Disorders and Stroke? Do many - or most, or all - of these illnesses reach onto DSP in Centrelink? Why? Or why not?

In the 18 months since I started this blog, and the last six months when I have been involved with BASA (Brain Aneurysm Support Australia) as administrator, I have done so much Googling for information about aneurysms and stroke, mostly because they are my illness. I have found so much information from other countries, including USA, Canada, Holland, South Africa, Japan, England and more. Every single country seems to have the same sort of problem that we have here in Aus: that very few people even understand aneurysms unless they or a family members might get diagnosed, or, sadly, end up in emergency with a rupture which can simply kill them. I would share this blog with anyone that you know who doesn't really understand aneurysms, strokes, brain tumours or any of the other 400 illnesses which are listed.

Finding out about these and getting to know them are essential. And please, don't ever disagree with anyone ending up applying for DSP. This might be exactly what they need.

Oh, and don't forget to tell them to Bang on a Beanie for the Brain Injury Awareness week on 17-23 August this year!

Nothing in the world is ever completely wrong. Even a stopped clock is right twice a day. ~ Paulo Coelho

I am back! Well, at least to this Aneurysm Aphorism blog, when I should have been on here regularly with news about what is happening with aneurysms and strokes. And anything else I have been involved with. Sorry, yes I am, but you know what? I have done heaps.... not paid, just heaps!

In February I had my second aneurysm CT'd again, and I'd turned up to see Dr Webster for a report on it. He was in an operation and wouldn't be back too soon, so I went home. An hour back to my present home (now Scarborough, same Moreton Bay Council area as Woody Point where I was last year end) and to my dog, who would pine for me. They should have my aneurysm CT'd every year, and I should go in to PA or closer to get a report from the neurosurgeon. I should be contacting PA, but I haven't written it down and I keep forgetting about it! PA Hospital rang me that evening and said I didn't need to reschedule with Dr Webster. I think they did that to me because I was so far away from them. That time I thought they were really thinking for me, but a bit later I started to think, I really do need it every year!

My course at Metro Health in North Lakes was about stroke personal self management, called "Dream, Believe, Achieve", which I found so very helpful. There were, most days, 8-10 people, either survivors or carers who attended and spoke about the problems we (they) all suffered. I have a booklet from that group which I can read through whenever I forget anything. I feel so good that I passed, and even  every person who stayed there for the 6 days over 6 weeks would pass! This course was run by Stroke Foundation, and I found out such a lot of information about this organisation... more coming in the future!

Last year I had joined the Aphasia group, and I meet them every month for a coffee and chat. After 8 months I am finally starting to remember some names! Last month I'd met a newby, I think his name is Sumil. This month he came with Tamara, from CBRT! She had helped me for 3 months last year with my speech pathology. She is a lovely woman, and I am sure that Sumil will come forward with her.

The other group which I joined is STEPS - Skills To Enable People and communitieS. This is related to the ABIOS (Acquired Brain Injury Outreach Service) which helped me when I left the BIRU ward and still couldn't talk. I am very happy with the relationship, and I have asked the leader, Areti, for information about whether or not I can train as a Leader for my group. Fingers are crossed!

And one other group I have joined with is Synapse, which is a brain injury group based in Queensland. There is a lot of stuff in this group that I could become involved with - just leading up to Bang on a Beanie which is advertising the Brain Injury Awareness week, 17-23 August this year. Check Synapse out, and buy a Beanie!!

On 10 June I had an article printed in the Redcliffe & Bayside Herald, which wrote about me living my own personal long road and the reasons why. It was so very good, and I have had a few good comments from people about this, including from my volunteer leader, Angelique, at the Redcliffe Art Gallery. That volunteering I still do, and now I am there on Monday and Friday mornings. I love it!

This week I received a phone call from Lilly who runs the CBRT (Community Based Rehabilitation Team). She was "in charge" of me when I came up to this area and went to CBRT. Now, she told me, she has had a call from someone who works with brain injuries, who read this article and want to come and interview me!!  I am so looking forward to this, I really believe that I can go forward to talk about brain aneurysms, ABI (Aquired Brain Injury), TBI (Trauma Brain Injury), Stroke and depression. This is stuff which I really know about now and I really do want to educate people about this!

I'm off again just now, but I really am hoping I don't forget this again!! Have a wonderful weekend everyone!

'Name the different kinds of people,’ said Miss Lupescu. ‘Now.’ ~ Neil Gaiman, The Graveyard Book

What is today's date? Have I forgotten it? It certainly seems like my history and future have merged together. My last blog was on 6 November, after I moved to Woody Point! But right now I feel pretty good, I have a future that is making me feel much better.

I mentioned, last time, that I said farewell to my CBRT team, but I didn't mention the Dolphins Gym which one of my lovely team people introduced me to. This was just "me", and I love it! Every Monday and Wednesday there has been a Heart Care class, which works as well for me looking after my stroke lifetime. The leader has rung people about me, and has given me some warnings about how I shouldn't be trying to get back to where I was. That's frustrating, but she already knows that I go for my next CT in January next year so I have to believe her.

The Heart Care class is set up very well. I do treadmill, exercycle and weights, then join the class for a fun activity and cool down. I have a training paper which I haven't had for years!

The CBRT person who brought me into the gym also joined me a couple of times with a swimming group, Aqua Fit, which I love. I have also been swimming 40 lengths (one km) in the pool. It frustrated me to start with when I only did 20 lengths (half a km) - I used to do 80 (two kms) before my operation, but I will stick with 40 for now. At the moment I am holding off because I have an earache. Very annoying!

I joined some brain aneurysm groups on Facebook. The first one I enjoyed because it was a community group, so able to be joined by people who simply want info. A couple of the others are closed groups, but, for me, that doesn't mean so much information but just a few games. The first one I joined is called Brain Aneurysm Support Australia, started by Maya, and I have been taken on as an admin! I am enjoying it all, as I have made, for myself, one thing to do - every day I post up some information. It is information that probably many people would not know, and is a safety for my language problems.

This is a wonderful group for aneurysm people and for so many other people who should find out information about aneurysms.

A few weeks ago I started my voluntary position with Redcliffe Art Gallery, on Friday mornings, and I enjoy it. This little gallery is different - very small, but so full of all sorts of art stuff, not just paintings. I have two weeks off over Christmas and New Year, then back into it.

So can my life look "normal"? Perhaps that is because so many people don't know what happens after an aneurysm - including a stroke. I found information from www.strokeassociation.org which is (another) USA organisation, but is pretty up about strokes to do with aneurysms. I didn't understand, until very recently, that I risked death with my stroke. Stroke Association wrote:

The [subarachnoid] hemorrhage may also damage the brain directly, usually from bleeding into the brain itself. This is called a “hemorrhagic stroke.” This can lead to: weakness or paralysis of an arm or leg, trouble speaking or understanding language, vision problems and seizures.

I struck trouble speaking my language and I still have it, and I also have some vision problems which are annoying, but I am certain that I am not completely in trouble - I met too many stroke people in North Lakes; read my last blog.

Right now, for my exercise and swimming, writing for BASA, volunteering at RAG and Christmas day which will be spent with my daughter and in-law, I am feeling good. With my CT in January I can only hope it will be okay.

Have a merry Christmas everyone. Wish me luck for the New Year!

Great spirits have always encountered violent opposition from mediocre minds - Albert Einstein

I have never realised that I have mislaid Aneurysm Aphorism. Actually, I never mislaid it, I just simply forgot it. My last blog was written on 1 July 2014, after I was released from BIRU. In the last 3 months I have moved, gotten a different pathology team, discovering my new precinct, going to North Lakes for stroke events, swimming, driving.... so much! And yet I am not fixed.

My surgery resulted in my stroke. I didn't know I'd had a stroke for a few days after ICU. In fact, it was probably when I was locked into BIRU. I, however, became a great patient, with some weekends off and an early (6.5 weeks??) discharge. I continued doing speech and OT pathology at PA Hospital, but it felt like repeated dosage. Probably was. When I moved to Woody Point I was taken into Redcliffe Community Health (my CBRT), and the team there were so much better than the PA people. No offense, just I believe the Redcliffe people had a few less patients than PA, and seemed so much like "people" to me.

The last 3 months has been experiential. At PA Hospital my then-lawyer, while he was waiting for the QIRC appeal, dropped me. I think he thought I was bad future. It certainly meant less money for him. Sad. I am seeing QIRC by myself. Who knows if it will work out? It would be great, but I am certain that there are a whole lot of people with aneurysm and strokes who have been set aside, just like my ex-employer did that in advance. Whoever has brain aneurysm with or without a stroke, people need to understand how this thing is changing lives of many.

There are quite a few of supporters for aneurysms in Australia. The Brain Foundation included some good literature on the aneurysms, but doesn't include the stroke.  The Brain Aneurysm Foundation (US) noted that some strokes are caused by ruptured aneurysms: "Ruptured brain aneurysms account for 3 – 5% of all new strokes." This still doesn't talk about someone like me - an unruptured aneurysm, still leading, in surgery, to my stroke.

After my internment I was giving a couple of Aphasia cards. I had no idea what they were used for, even though the cards did say. After CBRT sending me to North Lake for an event last month, I was feeling a lot more okay to check out my internet. I found Aphasia Australia, which says aphasia is: "Language difficulty caused by damage to the brain." It seems that's sort of where I have been - and still am. You know what? I am not feeling as bad now as I did in hospital, out of hospital, staying at home, and so many things I hated not being able to do.

A couple of weeks ago I got my driver's licence returned, after 7 months. Yes! I felt great! I can drive - I just need to be very careful. I am very aware of my loss of vision out of my car windows if my thoughts moved on, so I have to just watch. Yesterday, at a stroke club coffee also at North Lake, I met up with so many more stroke victims, some of whom are so much worse than me and will probably never drive again. So many of people that I was able to talk to in my usual stroke language! Who am I grateful to? Well, my CBRT team, my new GP - and me. I sometimes feel almost normal, but I think I am well aware of what can play on me. I know, now, that I go to bed very early - sometimes 7.30 - and I sleep most of the night. That is such a very long time since I ever did that. I don't feel bad about it, I know that my body is working hard to try to make me better.

I said goodbye to my CBRT yesterday, but I know that it's not "farewell". I can ring them, I might even get to swim with one or two of them! So far they have set up some new roads for me. I still have contact with my ABIOS person, which I think is essential. Right now I feel like my future is opening, and this is because the support people are always there.

That's not something that "normal" people ever seem to find out.