4 years later

Each year the anniversary of Dom's stroke gets less recognition from us.  I feel like it is similar to the death of a loved one - its not something you celebrate, it is just something that on that day I think "oh yeah, its been ... years since I lost them - wow thats gone fast", and then I go on with my day.  This year however, June 25 came and went and I didn't even think of the significance of that day.  I was a little busy with our almost 3 year old daughter and our new baby girl.  We welcomed Emily into the world on June 17, 2018.  So I may have been a little sleep deprived on June 25 this year! 

Four years on from that fateful day in 2014 and we now have two kids!  I remember at the time of Dom's stroke thinking that we would never have kids.  We'd been trying to conceive for about 6 months before Dom had the stroke.  And to have those negative pregnancy tests before the stroke, well, I just thought there's no way children will be possible for us now.  Then once Dom had recovered, well I was very unsure whether I really wanted to have children as the chance of Dom having another stroke will always be there, I just didn't know whether I wanted to be a single mother.  Turns out, my desire for children overrode my fear of raising them alone.  I didn't want to get to the point of being too old to have children and look back and regret the choice to not have them just because Dom might not be able to be part of that journey in our lives.  I thought "what if he is still here and healthy when we are in our 40s...I will regret not having kids".  So now we have two of them!  And my god do they keep us on our toes, but we wouldn't change it for the world!!

We were robbed of so much because of the stroke and then the epilepsy, but we haven't let that define us.  We have survived it and we are stronger for it - both together and individually.  I am a hell of a lot more resilient than I ever thought I could be.  I have always said "if you asked me how would you handle Dom having a severe medical emergency that would threaten his life, I would have told you that I would fall to pieces".  But that's not what happened at all.  I held it together.  I wouldn't say I thrived, thats not the right word, but I didn't just survive it, I accepted the challenge and kicked its arse!  I was heartbroken, devastated, petrified, uncertain, determined and hopeful all at the same time.  I look back on what I went through watching Dom go through those horrible couple of years and I am still shocked that I survived, that I came out the other side.  I didn't come out the same person - those couple of years changed me; not for the better and not in a bad way either, but I definitely changed. 

Dom was (still is) my everything.  But I now have the quiet confidence that I would be ok without him if that situation ever arose.  I remember conversations we have had over the years, before the stroke, that I would demand Dom die after me, that I could never handle losing him.  That I wouldn't survive and didn't want to go through that.  I still demand that he not die before me, but not because I wouldn't survive - I am confident I would...but now I just think he owes it to me after all he put me through to wait til I pass before he does.  Fair is fair isn't it? haha. 

So, we are we at now? Well we have two beautiful daughters.  Dom works full time, one day per week from home which helps him to battle and overcome the residual tiredness (thanks stroke).  He drives himself to and from the train station.  He gets up to Grace in the middle of the night, he reads her stories, plays games with her, guides her through her gymnastics classes when he can get to them and teaches her all about the solar system (her obsession - his as well coincidently).  He changes Emily's nappies, has fed her bottles on the occasions she has them (she's exclusively breastfed), he sings her songs, settles her down when she's upset.  Yes, he has some limitations but nothing overtly noticeable to the girls or anyone other than him and I.  He's an amazing father - as I knew he would be.  He hasn't let the stroke or epilepsy take that away from him. 

He is a wonderful husband.  He supports me, encourages me, helps me...he's everything he always was.  Yes, there are some slight changes in his personality compared to before the stroke, but I'm really the only one aware of them and in the past 4 years I have fallen in love with Dom 2.0 as I call him.  Some of the changes in him are a result of the stroke and some are a result of the medication.  I don't particularly care about the cause, or even the change.  Within him I can still see the man I fell in love with when I was 18 years old.  I can still see us growing old together and I look forward to each and everyday in between.  Yes, some days are not great - but I don't think the stroke or epilepsy is to blame - I think there are good days and not so good days in any relationship.  We disagree, but don't fight - we never have.  Some days I think "my god, I'm going to kill you" ...but what wife doesn't have those thoughts? I'm sure he wants to strangle me at times too.  We have a healthy relationship and a healthy outlook on life.  Our work-life balance has changed to life-focused, as opposed to work-focused.  Our girls, health and happiness are our priorities and that's the way it should be. 

 

 

What it means to be a Stroke Survivor.

Sorry its been a long time between posts!  Life has kind of gotten in the way....in a good way!  We have been very busy with our beautiful baby girl...she keeps us on our toes and she's not even walking yet!  She is a few days off being 11 months old, so I am well under way with planning her first birthday party and I can't wait!

Lately I have found myself thinking a lot about what it means to be a stroke survivor.  I'm not the one that had the stroke and survived, obviously, but as I was explaining to Dom the other day when things happen to him they happen to me too...good and bad.  When things happen that make him happy they also make me happy.  And so, when he had the stroke and spent time with paralysis that also happened to me, in a way.  I found myself thinking about the possibility of life with partial paralysis and what that would me for us.  For example, how would I be able to help Dom?  How would Dom be able to help himself?  Would he ever be able to work again? Play his guitar again?  Walk the dog again?  Cook with me?  Clean the toilets...because that's just eeewwwwww and I don't do it!  haha.  Thankfully these questions never really had to be answered because of Dom's remarkable recovery.  But I still find myself thinking about what it must mean to so many people out there to say "I am a Stroke Survivor".

Do they say it with pride?  Do they offer it up as a way of explaining their shortcomings?  Do they use it as an excuse of some sort?  What about their loved ones, partners, children, parents?  How do they interpret the term Stroke Survivor?  Its only been in the past few weeks that I feel I myself have changed my interpretation of that term.  I used to offer it as an excuse or explanation for Dom.  I would often say: "he had a stroke"... but not in a proud way.  Don't get me wrong, I have never been ashamed or embarrassed by Dom or the fact that he had a stroke...I just used it as an excuse I suppose.  But lately, I have found myself thinking more along the lines of: my husband is bloody amazing...he is a stroke survivor!  I think it is important for Stroke Survivors and their loved ones to recognise the feat of surviving a stroke, despite the lasting impacts said stroke may still be having on their lives, as something remarkable! Despite the cause of the stroke, medical complications, lifestyle choices...whatever the cause, be bloody proud of yourself!  You beat the stroke!  You are alive!  You are here, you wake each day, you see those you love, they see you.  You may be in the early stages of your recovery and are struggling to find the motivation to ace your rehab...take it one day at a time, one rehab session at a time, one milestone at a time...but take it!  Fight for yourself!  Get back what you can and make do with what you have.  Life is wonderful, don't give it up.

For us, life after stroke has not been easy.  We had an initial cruisy six months and thought we were all well and good, we even conceived our daughter, our first child, but then it all went to shit...or so it felt!  Dom started having seizures, which led to him falling into a depression so deep at times it seemed like there was no way out.  Today, two years after the stroke, we still have challenges, but we have each other!  There isn't a day that goes past where I regret Dom's survival, despite the hard times we've had.  He survived a stroke!  He is a Stroke Survivor and I couldn't be prouder of him and the battle we have fought to get back what the stroke took!  We haven't always been upbeat and positive, there have been times where we have both been furious, frustrated and on the brink of being defeated, but we have kept on fighting and we will continue to do so.

Don't let stroke defeat you.  Fight.  Be proud to call yourself a Stroke Survivor.  I am proud of you.

Stroke Week: Raising Awareness through Dom's Journey.

On Wednesday September 10 Dom & I got up nice and early to go into RMH to attend a presentation Dr Matt was giving on Dom’s stroke.

It was an amazing experience to sit in a presentation being delivered to professors, doctors, surgeons, scientists, registrars, medical students and I’m sure a whole host of others we weren’t even aware of!  We got to meet and thank Professor Davis, and also Mo, the Neurosurgeon responsible for the successful hemicraniectomy procedure on June 27. 

Dr Matt explained that he chose to present Dom’s case as it was Stroke Week and he thought it was a great way to contribute to raising awareness about stroke.  Dr Matt explained Dom’s background - you know the key stats i.e. age, pre-existing medical condition etc.  He then went on to detail Dom’s journey from his arrival in the RMH ED right through to his transfer to Rehabilitation, stopping to explain all the CT scans and MRI/MRVs in between!  I had a strong understanding of this whole process as Dr Matt was remarkable in ensuring I was kept up to date and informed about each scan and what they were considering in the early stages of Dom’s treatment.  Although I’d explained all this to Dom (and of course he read my blog!) it was a fantastic chance for him to hear about it all straight from the Dr! 

Dr Matt showed these CT scans along with many more.  As you can see the clot is quite obvious (of course once I knew what I was looking for it became obvious - kind of like a pre-natal ultrasound I suppose...it all looks like a black & white mess until the obvious is pointed out!) 

This scan shows the affected area of the brain - this isn’t a bleed, although there is a slight one, this area is the part of Dom’s brain that was affected due to the clot.

This scan is after the hemicraniectomy – as you can see quite a large section of the skull was removed and now that it’s out of the way, the brain has swelled to outside the area enclosed with the skill!  This was obvious after the surgery – one side of Dom’s head and face appeared to be swollen – turns out it was!

It was amazing to see this pictures as part of Dr Matt’s presentation and very educational!

Dr Matt went on to show these video's he took of Dom six days after surgery.  It shows how severe the paralysis was (although movement had begun to return when Dr Matt recorded Dom).  It also shows how confused Dom was.  When Dr Matt asks how long Dom has been in Australia for Dom begins to go through his numerical process where he would normally solve this type of problem by taking the current year, 2014 and then subtracting the year of his arrival from it.  He continues to repeat ‘2014’, and he either cant remember his arriving in 2000, or he is unsure what to do after determining ‘2014’.  This is hard for me to watch because as Dr Matt moves on and asks the next question I can see in Dom’s eyes that he is still thinking about the previous question and trying to work out how long he has been in Australia for.  He is unprepared for Dr Matt’s next question and cannot move on from the previous question.  It’s almost like he gets stuck and can’t let it go to continue answering other questions.

This visit to RMH was Dom’s first since being transferred to rehabilitation.  It was good for him to go back – he remembered sitting in the wheelchair in the cafeteria with his visitors.  He remembered going up and down in the elevator when we would ‘escape’ Stroke Ward for a break and fresh air.  This visit gave him a bit of closure as he was able to ask questions and continue to piece the memory fragments and bits and pieces from my blog to form full days.

Rehabilitation

On August 11 Dom had his first appointment at the Rehabilitation Centre at our local hospital.  This first appointment was an assessment interview and he did some physical tests with the physio.  Dom was really looking forward to the rehabilitation sessions as he was finding the exercise program he brought home from hospital too easy now that he'd been doing them everyday for three weeks.

Happy to be back in the garden, and a very happy dog too!

Dom and his physio found that his back pain was preventing him from fully undertaking the physical therapy program and asked him to have an x-ray done to see if that showed anything.  It showed something alright!  His has a compression fracture of his L1 vertebrae and after a bone density test has now been diagnosed with mild osteoporosis - a result of prolonged use of prednisolone.   And so now he is also taking Vitamin D and Calcium tablets each day until we find out more from yet another specialist on October 9.


The news of the compression fracture affected Dom more then the stroke diagnosis.  I don't know if this is because he is more alert than when he was diagnosed as having had a stroke or if it was just because he was told of the fracture in the middle of a rehab session where he was feeling really positive...he doesn't know why.  What I do know is that for a period of about 24 hours after being told of the compression fracture Dom seemed to sink into a depression.  He couldn't see anything that could be positive and for this brief amount of time he lost his motivation, strength and determination.  I found this hard to watch as he'd been so determined to get better from the get go, I didn't know how to help him.  I kept reinforcing the positives about his situation, and he finally began to see them and recognise these for himself again.  For this brief moment, a day and night, I was worried about how he was going to keep going, I was worried about how I was going to keep going.  It was tough being so positive in the hospital when I could see others weren't as positive as me, but once Dom was on the mend and interacting he was just as positive as me.  But this news knocked him for six, and for a little while I was being positive all on my own again.  But Dom snapped out of it, not to say he isn't still pissed off, and we both think occasionally "why me?" but, that isn't going to get Dom better, so we never think that for too long, or expect an answer!

An afternoon at the beach to cheer us up!

This moment of negativity led us to the National Stroke Foundation website : strokefoundation.com.au where we both found comfort in the inspirational stories available and the information easily accessed through the site.  It opened our eyes to a community of STROKE SURVIVORS (not victims!) and has helped us in Dom's recovery.  It led me to wanting to write this blog to possibly help others - to continue to community.  We are both now passionate supporters of the National Stroke Foundation and are using our work contacts and social media pages to help the National Stroke Foundation raise awareness of stroke.




Today is the first day of National Stroke Week and we have already helped to raise over $500 for the National Stroke Foundation through https://challengestroke.everydayhero.com/au/jessanddom We hope to be able to raise even more money throughout stroke week.

We are both taking the National Stroke Foundation's 'Challenge Stroke' seriously and are working at achieving it's goal of "Be Healthy. Be Aware. Be Your Best".  Please join us and share our fundraising link: https://challengestroke.everydayhero.com/au/jessanddom, the link to this blog: strokeat30.blogspot.com.au and take up the Stroke Challenge!

I'm wearing my Stroke Solidarity String to support this amazing charity!

Now that my blog is up to date with our present day activities, I will post again after the weekend as Dom has a pre-admission appointment with RMH Neurosurgery and a follow up appointment with RMH Neurology this week so hopefully we will have some positive news to enjoy and share with you.