World Stroke Day 2014

WORLD STROKE DAY: Wednesday October 29, 2014

Today is World Stroke Day and it is also 4 months after Dom had his stroke!  The journey through rehabilitation and recovery has been long, and at times felt never ending.  The light at the end of the tunnel has teased us by coming closer and moving further away.  Specialist appointments result in a barrage of feelings from anger and frustration to elation and positivity.

Over the past month, through a host of specialist appointments, we have discovered that Dom's stroke resulted in a number of factors aligning at the same time - factors which were unpreventable.  I think this is the hardest part to accept - that we couldn't have done anything to prevent his stroke, and that there is not a lot we can do to prevent another one except ensure he takes his Warfarin.  Its the helplessness that is the hardest to process.

As a wife I want to take care of my husband, look after him, make him happy, love him for my whole life.  Some days it feels like stroke is the dreaded rain cloud hanging over a day of outdoor fun.  Its not something I can forget, seeing him in the hospital - so sick, and me being unable to do anything to change that for him.  I would do anything to switch the roles, to have the stroke so he doesn't have to go through all this.  Although when I think about that properly, Dom would probably prefer it not be me that had the stroke - I can be a moody bitch at the best of times, let alone when I'm sick or injured.

The World Stroke Organisation http://www.world-stroke.org/  is using the 2014 World Stroke Day for their 'I am Woman' campaign:

"The World Stroke Organization (WSO) is calling for immediate action to address the global epidemic of stroke. 

The “I Am Woman” campaign reinforces the fact that while stroke does not discriminate between sexes, women are more at risk of

having a stroke and in many cases are the primary caregiver to an affected husband, father, partner, daughter or son."

http://www.worldstrokecampaign.org/get-involved/campaign-advocacy-brochures.html

 Objectives of the World Stroke Campaign and World Stroke Day - http://www.world-stroke.org/advocacy/world-stroke-campaign

• Raise awareness on the profound and universal impact of stroke on human life and suffering;
• Increase understanding of the solutions that exist. Prevention is the most readily applicable and affordable part of knowledge. Key actions must be made to encourage healthy environments to support healthy behaviors.
• Translate knowledge into action. Transdisciplinary teams must be encouraged to develop expertise and translate evidence into practice. Establish simple but comprehensive stroke units. Stroke units have long proven their worth, even in their most basic form.  And, work towards building a healthcare system that responds to the needs of each individual living with the impact of stroke.

Generate a movement that stimulates collective responsibility and action. Families, community-based groups, professional societies, national governments and the international community all need to support the delivery of programs and services to all persons affected by stroke, as well as fight for better access to basic health services.

- See more at: http://www.world-stroke.org/advocacy/world-stroke-campaign#sthash.Q6Ft89ul.dpuf



1 in 6 people will have a stroke in their lifetime.  Women are at greater risk than men of having a stroke, but women are also more likely to be carers of a stroke survivor.  So today, World Stroke Day, take a moment to think about your loved ones and how 1 in 6 could effect you and the ones you love - what are you going to do to prevent becoming a stroke statistic?

Unite with me and Dom in the fight against stroke.  Contact me if you would like to purchase a Stroke Solidarity String or purchase directly from the Stroke Foundation - funds raised are donated to the Stroke Foundation.




I am woman...stroke affects me.  But I am thankful for the second chance Dom has at life, we will not waste it.  Help me raise awareness to fight stroke by sharing this blog with everyone you can.

We are still raising money for the Stroke Foundation via our Everyday Hero account; please donate if you can, and share this link so others can also donate: 

http://challengestroke.everydayhero.com/au/jessanddom 

Our Wedding Day - January 7, 2012.

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.

Home Sweet Home

Dom walked out of the Sunshine Hospital at 11am on July 17; 23 days after having a stroke, 25 days after having emergency surgery.  23 days prior I worried about how I would get him home from RMH (thinking he’d hurt his back – nothing else).  25 days prior I thought I’d lose him forever…but here he was, sitting on the couch with me in our lounge room!  This was strange.  It was the first time in just over 3 weeks that I was able to sit and not have to worry about what traffic would be like getting to the hospital, did I have everything packed that Dom needed and requested, did I feed the dog and would he be ok being left alone again.  But Dom was home…more tears – happy ones this time! 

Home is where the heart is :-)

Now our focus turned to more extensive rehabilitation.  We didn’t want to lose what he had achieved at Sunshine, we wanted to build on it.  The first week of Dom being home were fairly quiet and it was nice to settle into a new kind of routine.  We were worried Dom would get bored, frustrated and without having external things to contribute to that he would become depressed.  So we came up with a list of ‘things’ for him to do when he was sick of watching TV.  He could play his guitar again, play his PlayStation, watch YouTube…we only came up with a small list and were thankful we had Foxtel. 

There were lots of things to organise now Dom was home….GP appointments, filling prescriptions, blood tests, finance management and decisions to be made.  I changed my work schedule to only going in to teach my classes, so I could come home to Dom during my free sessions. He was still getting used to the amount of concentration he needed to pay to simple everyday tasks, like getting his breakfast.  But he faced it one day at a time and set himself small goals to work towards each day. 

Dom threw himself into physical therapy.  He did two sessions a day in our home gym working on building his core strength and gaining back the muscle mass he lost during his hospital stay.  He still had weakness in the right side of his body compared to the left.  He had full movement but not the strength so he worked on increasing it while on the waiting list for outpatient rehab at our local hospital. 

Dom had lots of visitors during his first couple of weeks home and this motivated him to continue to improve, it was uplifting to have people come and visit and remark how much they couldn’t believe Dom had had a stroke a month ago…he looked so good and was so much like his old self, it was remarkable. 

Dom was so positive about his rehabilitation – he couldn’t wait to get into the outpatient program to further the progress he was making.

Recovery Stage 1

From HDU to Stroke Ward

On June 30, when I went in to visit Dom he looked pretty good - he seemed more alert and responsive than he had the previous few days.  When I arrived I spoke to him...asked if he missed me (he nodded his head 'yes').  I told him that I missed him and was dying for a hug!  He brought his left arm up to my right shoulder and pulled me down to him.  I cried on him while he rubbed my back.  Amazing how you don't realise how important a hug from your husband is until you can't have one whenever you want one anymore!  I quickly pulled myself together and focused my attention back on Dom and his recovery.  He was so happy to have the cerebral drainage tubes removed, he could feel them sitting on his pillow but couldn't move around to see what they were so they were a point of frustration for him.  It was such a small thing to have done, but seemed like a massive step in his recovery.

On July 1 he was assessed by the physio, Rosy, and she determined that Dom needed to sit in a chair.  As he hurt is back during the seizures he was hoisted into a reclining wheelchair that would allow him to lay back enough to take the pressure off his back.  He was very alert in the chair, but tired very quickly as he was in a position to visually take in more than he had been able to whilst lying in bed. Also, he was still in a bit of pain despite reclining the chair and this wore him out pretty quickly.  

Sitting in the wheel chair for about an hour each day became part of his routine.  Along with his neurological observations which consisted of questions like:

- What day is it today?

- What month are we in?

- What year are we in?

- Do you know where you are?

Dom explained to me a couple of weeks ago that he couldn't understand why the nurses kept asking him these questions.  At the time, he said he remembers thinking, why didn't you write the date down when I told you the last time?  And he said the "Do you know where you are?" question was so frustrating because he wanted to tell them that obviously it was a hospital and did it really matter which one...he wasn't going anywhere so he didn't need to know which hospital he was in.  He said that he remembers sometimes just pretending to be asleep and not answering the nurses when they'd come to ask their questions because he "couldn't be bothered with their stupid questions", he explained, "I knew the answers were in my head so that was enough for me".  

Dom was moved out of the High Dependency Unit and into Stroke Ward on the 2nd of July.  This was excellent news as it was another step in the right direction for his recovery.  He had a little more privacy and didn't have to be monitored as closely by the nurses. 

Dom was still unable to move the right side of his body.  He had sensation in his arm, leg, hand and foot, but no movement.  He didn't seem to be too concerned about this; just a bit pissed off that he couldn't get his arm and leg to do what he wanted them to do. I didn't question him about the movement, I just kept reassuring him that it would get better and he would be ok.  I couldn't imagine what it would be like to go to work one day and then the next thing you are aware of is being in the hospital with paralysis in the right side of your body and part of skull missing. It would be so scary and so the last thing I wanted was for Dom to worry about it.  

On July 4 Dom was visited by some staff from the Rehabilitation clinic. They did some assessments and told Dom he was now on the waiting list at Royal Park and also Sunshine Hospital.  This was great news!  However, their assessments brought to Dom's attention how much paralysis he had and exactly what sort of condition he was in.  He hadn't been sheltered from his condition, the stroke, surgery or the paralysis...but all of the time I'd been spending with him I was positive and kept reassuring him.  The rehab staff spoke to Dom during the midday rest period when visitors were asked to leave the ward.  So he was left alone to ponder their questions about transitioning home. When I returned for the afternoon visiting period he was very frustrated, angry and depressed.  The rehab staff asked him questions like "Is there anyone to care for you if you leave rehab still requiring a hoist to move from a bed to a chair?"  I was not allowing myself to dwell on what sort of movement and mobility Dom would have when he came home - we'd just been informed he was on the rehab waiting list, I'd been focused on him getting better not worrying about what he'd be able to do when he came home. These questions were a big blow to Dom's confidence and mental state - he was no longer as confident in his ability to recover as he had been prior to their visit.  

Dr Matt came in and asked Dom if he'd allow Dr Matt to video tape some neurological assessments to use in a presentation he would give to his colleagues about CVT as it is so rare he wanted to take the opportunity to present it to others in the field.  Dom was hesitant to agree - he felt like it wasn't fair that all this had happened to him and he didn't want to be videoed doing things that he couldn't do.  He nodded agreement to Dr Matt and after he left us I spoke to Dom about looking for a positive out of all this. We needed to focus on how we could make the best of the shit situation.  If a positive was that we could help educate other doctors so that they could be aware of the symptoms of this type of stroke then perhaps other young couples wouldn't have to experience what we had.  I explained to Dom how lucky we were that he had the stroke at the Flinders Street station, because this resulted in him being taken to RMH where the Neurology team were directed by Professor Davis who was familiar with CVT and the treatment of it.  We were so lucky that Dom's gastroenterologist has had other UC patients suffer CVT and he was in contact with the Neurology team treating Dom.  We were lucky this whole thing happened the way it did.  Its horrible it happened but it could have been so much worse.  That's what I keep telling Dom to this day...when it all seems to be a little too hard we always think about how much worse it all could have been.  

You're not alone

Two months ago my 30 year old husband had a stroke.  I have spoken with him and he agreed to my writing this blog to detail the journey we've been on so far in his recovery and rehabilitation in a hope to help us process what has happened but also to reassure any stroke victims and their families that you are not alone.  

This has been such an unpredictable and scary event in our lives and we were fortunate to have had amazing medical staff to guide us through this roller coaster of decisions and emotions.  We were also very overwhelmed by the amount of love and support offered to us by family and friends.  It is true, during times like this you realise who your true friends are!  

I am not claiming any expertise here, nor am I preaching to you about what you should do or how you should deal with this.  I am simply wanting to share my story with you in the hope that it can provide you with an insight into one person's stroke journey.  

If you, or anyone you know needs assistance call Lifeline: 13 11 14:

"Lifeline is a national charity providing all Australians experiencing a personal crisis with access to 24 hour crisis support and suicide prevention services.

Somewhere in Australia there is a new call to Lifeline every minute. People call Lifeline’s 24 hour crisis line
13 11 14 about:

• Suicidal thoughts or attempts
• Personal crisis
• Anxiety
• Depression
• Loneliness
• Abuse and trauma
• Stresses from work, family or society
• Self-help information for friends and family"
  
  Source: https://www.lifeline.org.au/ 

Forgive my inconsistent posts - it's hard to find the time between my own full-time work and assisting my husband through his rehabilitation.  

Join me in the Return from Stroke journey my husband and I are embarking on.