Sometimes it just needs to be about you

Sometimes your right to think about yourself, it doesn't have to be all or most of the time, just on occasion it's justified and right.

After surviving a stroke on 22nd August 2010 I can understand why one would ask the question, "Why me?"

If you don't have an answer with a very short time-frame, a few days, then you need to stop looking for an answer.

I'm recovering from being struck down with a chronic condition, I had a stroke on 22nd August 2010. Although I haven't made a complete recovery YET! I know that this will come. I strangely can be classed as having two ages, my birth date is 28th Jan 1966 but there are pieces of me that had there memory wiped and they can only go back to 22nd Aug 2010.

You wouldn't expect that after doing something extremely complex for a few months you'd be as good as someone would been doing the same thing for 40 years. Why then expect to undertake the same things at the same level. Don't be hard on yourself, it's easy to be critical of the things that you can no longer undertake, realise the many things that one can.

I know that there are activities & things I used to undertake, but I can't now. I started this journey in saying to myself that I'll recover everything, however I've undertaken so many things throughout my life, I don't think that I'd be able to undertake some of the things even if the stroke hadn't have occurred. But it did, like or not this has happened so I haven't a choice but deal with it.

By accepting the situation not trying to align blame, this has allowed me to be positive in my outcomes. I can see that it would be extremely easy to feel sorry for my situation, be angry and allowing myself to be depressed.

On coming home I immediately wanted to find a way forward, I felt lost and wanted to be led to a road, I was hoping that once finding the road to recovery then I'd follow signs. I was directed on an initial road, the assistance soon stopped and I was left on this road. Not sure whether it was the correct road it would have easy for me to stop and hope for a passer-by to help but instead I kept going, there were crossroads and instead of pondering, I chose a direction and kept going. Who knows if the other route woud have been easier, i don't really care, I've got this far and can either stop or keep going.

Ya know what, I'm going to keep going and I have a smile on my face.

Wow! What a couple of years (part 3)

Whilst in the pool I became aware that  the water was taking most of body weight and I realised that I could start hopping and wouldn't be having a negative affect on my body. So I started hopping in the pool and continued doing this as part of my rehab back home.

We came back home, it was in early November and I was starting the next phase of the journey of my rehabilitation. I joined a Pilates class, went to a swimming pool to hop around, continued with my writing and computer sessions, as well as reading a book aloud.


During this time I was not working, spending a lot of time at home and decided to build a retaining wall as part of my rehabilitation. This took about 4 weeks to undertake, it wasn't an activity to undertake quickly and carrying and moving the sleepers around the garden were excellent therapy for me.

So at the end of November I caught up the the CFA Brigade Captain, Pete, and caught up for a chat and a coffee. We discussed what my aim was and what be ahead of me if I was to choose this path. I turned up at the station on the Sunday and felt like this was a huge mistake but I needed to persevere and meet what was a huge challenge, both mentally and physically.


Over the next couple of months I was slowly ticking off the mini milestones I'd set out whilst in my first weeks from hospital. One of the milestones was to go for a bike ride. Oh my, that was an experience. I unsteadily set off on the ride and chose to take a bike path, at the end of bike paths there's sometimes posts in the middle to prevent cars accessing them. Well I was unsteady, not being able to control my right leg perfectly and became focused on this post that I was slowly approaching. When learning to ride a motor bike they instruct you to look at in the direction that you want to travel and not at the obstacle and you'll always keep going: Don't do this and you'll hit the obstacle. Well the saying is true as I hit the post, not hard and uninjured and an undamaged bike, but I ended my journey, cycled home and didn't attempt to ride a bike for another 14 months. It worked out well and I can now ride again.

It was my birthday and we went up to Bright to follow through with a gift voucher that I'd received as a present over a year ago, I was going to try paragliding. I felt that I needed to prove to myself that I could still undertake activities and pursued in undertake paragliding, The experience was fantastic and I am really happy to have undertaken this. We'd advised the instructor of my situation and he said if i could stand and jog slowly then we'd be fine.



 It was still January 2011, we flew to New Zealand and I didn't bang my head in the cabin: Yay! progress.


Over the previous two months I was looking for a job, wanting to get back into working. When I initially spoke recruitment consultants I was open about my situation and quickly realised that every consultant was dropping me: I was a little concerned that I wouldn't get a job. Then a friend gave me a call saying they wanted me to undertake a role that helped a program manager set up his program office.


I started the role at the end of February and didn't realise what I was letting myself in for. The role itself was really simple but my own confidence and inhibitions were more challenging than I would have ever thought.

Meanwhile outside of work I'd just started a 9 month course undertaking the basic fire fighting knowledge, so Wednesday nights and Sunday mornings were now to be taken up by this course.


I was given a desk that was in the corner, which suited me as I did not want to interact with people. When I walked along the corridors i was under the impression that I wasn't walking straight and  people would notice. I didn't want to speak on the phone as I was self conscious of my speech. My typing was reasonably slow and in-accurate and my hand writing was something that I was not comfortable with. How was I going to get over this?

Whilst being back in the city and working I became aware that I wasn't improving as quickly as I had been. I therefore engaged with a fitness trainer and worked with him for the next few months. We focused on having my body undertake movements correctly and we improved not only my fitness but how the body actually worked.

I nearly raised more than money.

In March 2011 we were partaking in the Worlds Greatest Shave, we did this at the local shopping precinct and were raising money for leukemia. IT was just after 0930hrs and we had just set up and sprayed our heads, all of a sudden I was accosted by a drunk verbally, I couldn't defend myself either verbally or physically and felt quite scared. I was shocked that there were some other members of the team trying to raise money and no one stepped up or showed any signs of stepping in; I do stilk wonder if they would have done before anything happened. Thank fully as I didn't respond verbally the person walked away and no further confrontation occurred.

Back at work my confidence was improving over time, the things that concerned me were slowly improving and my confidence on the phone was improving. After 4 weeks I held my first conference call, I was nervous before hand however the call went fine and I had overcome one big concern: tick!.

The next few months passed by without any miracles happening but I was still improving and noticing my speech subtly changing. The aphasia was becoming less obvious.

At the end of July we had another week away, this time Broome, WA was the destination. We had a great time, more relaxing than anything else. Winter sun, camels on the beach and a trip out flying over the Bungle Bungles in Western Australia. 

As the next few months passed by I was improving bit by bit and eventually I'd decided that I'd out grown this role and it had enabled me to grow.  It so happened that I took a phone call from a colleague whom I'd worked with previously, he'd been fully aware of my situation and even visited me in hospital.


This phone call led to a Project Management role and leading a team of developers and testers, as well as a coffee.


In the new role had to pick up my confidence and make out to the team that I was the project manager and they could have confidence in my leadership. Not only was I back in a project manager role I was also being asked to deliver this work in a new methodology, which was completely new to me as well as the team and we had a full time coach working along side us. This coach was called John and little did I know that we'd become really good friends.


I spent 7 months with this team from August 2011 to February 2012, this is the closest that I got to a team and was saddened when we departed.

Wow! What a couple of years (Part 2)

After returning home I was contacted by my local community hospital, that was only 1500 metres from our house to undertake my therapies.

I was asked if I wanted to undertake my sessions at home but I opted to have these at the hospital, which meant I needed to walk the relatively short distance to the out-patient therapies area. This excluded the initial session for each of them. My occupational therapist (OT) was my most memorable as whilst making a cup of tea, I reached up to the cupboard to grab a mug, struggling with my right arm and hand and was then advised to use my left arm, to make my life easier. I was amazed, immediately I advised my OT that I was not going to make my life easier and I was right handed and would continue to use my right arm.

I was due to go to my first physio session on the Tuesday and so wanted to see how long it would take me to walk to the hospital. As I was still walking like a drunk trying to walk straight, the distance I covered was nearly a third more than a regular journey as I swayed between either edge of the path.

I continued to undertake physio sessions twice a week, with the focus being on my balance, leg and arm muscles. As an example as to how weak I was, I was having trouble using my right tricep to raise my arm, from behind my head with a 2 kg weight, 15 times. I can currently undertake the same exercise with 10kgs for 20 repetitions extremely easily.

As part of my OT I also had to learn to build up my fine motor controls and simple functions with my right arm and hand. I couldn't draw a continual straight line  or trace around lines, my hand shook like a persons with  multiple sclerosis and my writing was similar to that of a 5 year old's. Once I'd improved to such an extent I tried to write, however I tried undertake some joined up writing and found I didn't know how to join to letters. I then took out the books that I'd previously asked my daughter to purchase, which were to help educate pre-schoolers. I then used these to trace and copy, which eventually led to me being able to undertake partially joined up writing.

In the same time span I was accepted as an out patient for speech therapy, I was undertaking these sessions once a week, with reading aloud, tongue twisters and provided with exercises and reading to undertake. I was not happy with my speech and one of the areas that I wanted to resolve quickly as I wanted to fell confident on the phone and in interviews.

I continued with these activities until early November when I was advised by all my therapists that they were recommending that I didn't need their expertise and the physio said that I was not a danger to myself or to the community and therefore I would be released. I was not happy with this and felt that I was only 80% recovered and still couldn't jog.

During this period my wife had bought me a computer program called "Brain Fitness Program", to which I was undertaking at least an hour a day exercising my brain. I struggled at some aspects and noticed my wife watching a listening, knowing that I wasn't doing too well. To her credit she tried  not to show it and I never spoke about my noticing her reactions. I continued to undertake this until February 2011.

At the end of October 2010 I wanted to go for a run, knowing that I wasn't perfect but felt the need to try and achieve this task. I was still having a problem with my gait but not aware as to what the problem was.

 I went out on my own, walked to a starting point and started to try and jog. I immediately new there was a major problem, my right leg was like a very compat piece of rubber and every step caused a pain in my hip: my leg had no suspension, the muscles were either fully on or fully off. I walked back home, wondering how I was going to resolve this.

My wife arranged for us to take a break, a week away in the sun. I was reasonably comfortable out and about but going to an airport and enduring these crowds was a new experience. One experience I remember was whilst taking my seat on the plane. After placing my bag in the overhead locker I went to take the centre seat. I'd forgotten that regular height people had to duck their head's a bit and banged my head on the overhead locker; this was just one of the experiences I was going to have to relearn.

As we were next to the beach, I new that walking in the soft sand would be a good test for my balance; this did and I found walking quickly draining. What I didn't know was that walking in thongs would be difficult. I was expending energy in holding on to the thong with my toes and ended up taking these off as again my energy for walking was being drained. I'd commented that I'd now be wearing sandles.

Whilst on holiday I was also wanting to test out if I could still swim, I walked into the pool, stepped slowly down the steps, whilst holding onto the side and was now in the shallow end of the pool. Wow, was I apprehensive about trying to swim, I seriously thought that I'd end up going around in circles. I took the plunge and I could swim, slowly, but I could swim, YAY!

Whilst in the pool I became aware that  the water was taking most of body weight and I realised that I could start hopping and wouldn't be having a negative affect on my body. So I started hopping in the pool and continued doing this as part of my rehab back home.

In November 2010 we were going to attend the annual Country Fire Brigade (CFA) function, my wife had just completed her first full year as a fire-fighter and it was also the first time that I was going to go out with a group of people. I was nervous about attending, I was still not comfortable on my feet, my balance was okay but very unsteady if I was bumped. My speech was still not good and the aphasia meant I couldn't easily be part of a conversation. The evening went without drama but I was so taken with the way the members responded to me, they were really nice and made me feel like a member of the family. It was the next day that I decided to speak to the Brigade Captain and ask if he'd support me trying to become an operational fire-fighter.

To be continued..........

Wow!, what a couple of years (Part 1)

It was July 2010, I'd handed my notice in at work and was looking forward to a months break. I'd also recently just signed a contract for the car of my dreams, a  brand new BMW Z5.

I picked up the car on my wife's birthday, I'd arranged the days events previously and was then advised at the last moment that the car would be available to be picked up. I enjoyed the next few weeks driving around in this awesome car; life just couldn't get better.

It was now the middle of August and I'd just started looking for my next role, being choosey about what I was willing to apply for and was holding out for a good salary. I'd thought I'd found a role, applied for this and had an initial interview on 16th Aug 2010 which went really well and was to lead to a second interview on the 23rd Aug.

I'd had an Operation on the 17th Aug 2010, which was a reasonably simple Out-patient appointment that still required a general anesthetic, with my wife giving me a lift home. I was given Opiate based pain killers and used these as prescribed to keep the pain away. On the Friday night my wife advised me that she would be sleeping in the spare room as my snoring was too much,  especially whilst taking the Opiate based pain killers and my excessive weight causing me to have sleep apnea; she'd had a horrendous night on the Thursday and really benefited from a good nights sleep.

We had a pretty good day on the Saturday, around the local shopping centre, having a pretty relaxing time and I remember that we were looking at spectacle frames. We finished the day off by going around a friend's place for dinner. It was an enjoyable night, I didn't drink because of my medication and we left around midnight and went home to bed. I woke up about 0230hrs needing the bathroom, finished up and little did I know that my life was about to change dramatically in about 3 hours.

At 0530hrs on the 22nd Aug 2010 I awoke and was just suffering from my first stoke. I regained consciousness around 0730hrs and was in an Emergency ward after suffering a second stroke, being transferred via ambulance and being resuscitated.

I was taken into the High Dependency Unit (HDU) of the Neurology ward, unable to speak, swallow or move my right had side and all I wanted to do was sleep: my second stroke had caused hemiparesis to my right had side. Although I was extremely sleepy my memory of the MRI will remain with em forever.

I was wheeled down the corridors to undergo an MRI, I couldn't move and was on my back watch the lights go by overhead, I remember thinking this is like on the TV. I was moved onto the MRI machine flat on my back. I was very concerned that I may choke and was extremely frightened when my head was placed in a frame so that I couldn't move. The bed moved onto the small cylinder and all i could see was a small mirror that enabled me to have a tiny view out of the machine. I was extremely close to having a panic attack and was feeling the most scared in my life. The noise was extremely loud and the time in here was definitely the worst in my life so far. I returned from the MRI saying that I didn't want a second MRI and it was really scary, I've never been so frightened of being sick, not being able to swallow and not being able to communicate to someone that I couldn't see.


 My wife and daughter were advised before they departed that I may not see the night out and that they wouldn't be able to provide any prognosis until there had been no depreciation over 24 hours.

When my family came in the next day my condition hadn't changed. This was to be day 1 post the stroke and the next few months were counted by additional days rather than dates or days of the week.

My improvement started on day 3, when I could move the very tip of my thumb and bend my knee very slightly: talking aloud to my hand and fingers did not appear to be making any difference. over the next few days I was placed on my legs, achieved covering 3 metres walking but could not control the muscles in my right leg and hyper-extended my right knee when trying to take steps, this remained for over 60 days.

In my first week at the hospital I'd had Scans, and MRI and an analysis of my heart. My blood pressure wasn't high, my cholesterol wasn't high and there were no reasons that could be found that had caused my strokes. It was day seven and I advised my wife that I was having a blue day, asked her to leave me on my own, after only an hour of visiting. After about an hour on my own I rang my wife again and asked her to return, I started crying and didn't stop for the next hour, sobbing aloud an causing a relative who was visiting another patient who tried to console me. This day was the turning point of my recovery: the day I realised that it was I that could accept my situation or strive to recover.

During the end of my first week my daughter made a suggestion of undertaking the "Run Melbourne" 5 Km in July 2011. This was to be one of my major goals to undertake this in either a wheel chair, partially walking or undertaking the whole event. So the three of us agreed that we would undertake this

I remained in hospital for a further week, daily escaping in a wheelchair with my wife pushing, and going to the hospital coffee shop. On day 15 I was transferred to a rehabilitation unit, by ambulance as I couldn't transfer from the wheelchair to the car.

I spent 20 days in the Victorian Rehab unit, undertaking physio-therapy, speech therapy, occupational-therapy for my upper limb and water-therapy. As well as walking myself as far as I could, covering distances from 30 metres to a distance of approx 100 metres over the weeks. On day 26 I was allowed to have a day out with my wife and conquered transferring to the car although extremely tired I now wanted to go home

It was my first week at home and I wanted to go to a Stroke support group, there happened to be the Stroke Association of Victoria support group that held it's meetings not 500 metres from my house, I touched base with the secretary beforehand and went to the group. I was amazed, they were a friendly bunch but when the chairman asked what the group had achieved that during he last fortnight, the biggest accomplishment was that someone had received a watch for their birthday. I walked out of the group and back home, promising myself that this was not going to be my life.

After returning home I was contacted by my local community hospital, that was only 1500 metres from our house to undertake my therapies.

To be continued...................

Inspirational? I 'm working it out.

I've been told on a couple of occasions as to how inspirational my story iss, so I'd thought I'd work on something and see how it goes.

Inspire:

• To influence with an animating, quickening, or exalting influence. produce or arouse, fill or affect a feeling, thought, etc.

To go through 3 hours of one's life and not realise that basic functions, that one thought were thoughtless processes, were being rendered unworkable without a worry is astonishing.

After just 3 hours to be left with these symptoms is unimaginable:

• Unable to move the right arm
• Unable to move the right leg and foot
• Unable to swallow correctly
• Unable to sit up
• Unable to talk properly

To recover most of these functions completely sounds wonderful but not really astounding to a lay-person.

During the next few blogs I'll break each of these components down so as to share what it has taken to my situation today.

A TALE OF DISAPPOINTMENT

A few months ago I was asked if I would speak at a National Stroke Foundation event, I pondered over this for a few minutes and thought to myself that this could be really good. I went back to the person and gratefully accepted stating I'd be really pleased to do this.

After this brief conversation I walked away from this thinking I should read up a bit on public speaking and prepared myself mentally with standing up in front of 100 or so people, talking in detail about my stroke, what happened, how this affected me, setting the scene and going into details of what I went through in the hospital, rehab and the subsequent 10 months. Overall I thought that this would go for at least 30 mins;So this was about 4 months ago and the daunting event was heading directly for me during this time.


I asked my wife to come with me as I felt I needed this moral support and we'd been through this journey together. So we both had arranged with our employers to take this day off, Jac infact had to postpone a day in a spa that she'd been awarded through work.
 
So today I realised that I hadn't informed the NSF that I'd be bringing one guest and called them, I was informed this would be fine; so that was sorted. I was then told I receive the run sheet for the event as I'd asked about the duration of my session.

I received the run sheet and was gob smacked that I was being asked to speak for 5 mins. I was being asked to travel over 2 hrs one way by my own car to stand up for 5 minutes to talk about the most serious event in my life that had taken the past year to overcome. OMG how insulting.

I then immediately rang them and advised them that I was not attending for a 5 minute stint on stage to act as the "Stroke Survivor" roled out to be presented to a paying audience. So although I believe that having someone to speak about an event that has taken both mental and physical endurance to the edge of tolerance could be really great, I will not be a poster boy as a "Survivor" as this doesn't benefit anyone.

I am not desperate to stand up in front of an audience for 5 mins, I imagine it would go something like this: " Good afternoon, my name is Tony, I'm 46 yrs old, married, 2 adult children, worked as a project manager was a little overweight and have had a stroke."

Wow AA seems like a real walk in the park.

Yay, I've been offered a PM role

I'd been thinking that I wouldn't want a Project Manager role again, thinking that I'd be going ahead and making a difference but I've realised that this isn't going to happen quickly and I need to have an involvement within before I can actually make a big difference.

I'd be really happy to be involved in a small amount of voluntary work to make me feel better in myself, as well as take on a full-time PM gig.

So I had a chat with an old colleague and he told me about a position he had, after a brief chat and coffee I was sold. I got to thinking about being in a PM role again and having the ability to make decisions and that really excited me. I'm now very happy to move on and undertake something with a bit more responsibility as I'm not really enthralled about being the SIM card delivery boy.

This role that I've undertaken has been really good, it's enabled me to gain confidence and improve on most aspects of what the stroke took away. I'm actually really excited to be in a PM role again and can't wait to be involved again.