Learning to live in freedom and independence post stroke

 

Travelling with a disability – living your best life.

1.       Fear of having another stroke abroad 

     Opening the door with my bags packed to head to Italy with my husband was super exciting and incredibly daunting. This duality is not just limited to stroke survivors but to anyone who suffers from anxiety or phobias of flying, however, for stroke survivors the potential of a recurrence is in our minds (pun intended) and it becomes evident as soon as our feet hit the airport floor. The dreaded - WHAT IF. What if another stroke happens on the plane, in another country, how do other countries manage their health systems, how quick is the response, what happens if I cannot get home fast enough? Yep - so many what ifs...

What if everything is going to be just fine  👍

So what's the secret to successful travelling with disability?

Prepare..prepare...prepare

1. Tell your doctor when you're travelling to another country and what you will need

     i.e. medications etc. get the all clear from them before you go. They can also write a letter        for customs regarding your legal medications. 

2. If you have a medical device and it's small enough, take it onto the plane as overhead              luggage. This way it won't get lost.

3. Do not leave home without travel insurance.

4. Before you reach customs, tell them early if you have a medical device, medications or            have had a surgical implant that may trigger the sensors. This truly makes all the                  difference for a smooth transition for international travel. I failed to tell them the first 

    time and one customs officer took delight in taking apart my toiletry bag and tipping all 

    my medications out onto the bench for everyone else to see. What a jerk....

5.  5. Borrow or buy comforts for the plane. Compression socks, travel pillow, bluetooth    

         earphones, etc... these will be your saving grace. 

      

     6. If you suffer spasticity like I do, be prepared to be uncomfortable, don't wait, just take the         pain killers.

https://www.flightcentre.com.au/flights/planning-your-flight/disabilities

2. Understanding your limits

 Tips to monitor your limits

     Wearing a fitbit while you are walking or riding around international cities will not only help with the time, it will encourage you to keep going and celebrate when you have reached a goal. However, if you need to stop due to being too uncomfortable with any disability you may have, then stop. Grab a coffee, a sprtiz, lunch, or just find a park bench to stop and rest. It is crucially important not to overdo it. You may end up being too exhausted the next day to continue on your amazing adventure. So KNOW YOUR LIMITS. Not your friends limits, not your kids limits, not your partners limits .... Your limits.

3. Educating others of your needs

It can be tricky for anyone to voice what they need from others especially with a disability but, it is so important to voice your needs so that everyone has a great time. 

TOP TIPS

•      Write your needs down on a piece of paper

•      Make them simple and clear

•      Don't judge yourself or others for your disability struggles in a foreign country

•      Take some time out to think of your needs and wants and rethink again if needed

https://www.mudcoaching.com/blog/2021/5/11/how-to-talk-to-your-partner-about-your-unmet-needs

 4. Listen to your body

When we were in Siena, Italy, I almost forgot that I even had a stroke because we were so distracted by the beauty of the ancient walled city. The narrow cobblestone streets with beautiful buildings dating back centuries caught me off guard and I ended up having a horrible spasm attack in my leg. The pain was awful, but there was no other option, I had to keep walking so we could find somewhere to sit down or a least find a taxi to get back to the hotel so I could lie down and stop the spasms. This was the moment when I realised I had failed to listen to my body and the warning sign that the spasticity was going to grip by leg and render me immobile. I have learnt that when I get to this point I needed to stop much earlier before I even feel a twinge of stiffness in my muscles. 

5. Do yourself a favour

Getting around

j      Each country has its own public transport that is for their own environment. Trams, trains, buses, ferries and taxi's. In Venice, there are no cars, or bikes, taxi's or buses, it is strickly ferries, boats or gondola's. To get there it is best to catch a tram and then a ferry to wherever you want to go. 

      E-bikes are the best

Bikes for people with a disability are increasing, especially in 

European countries

https://www.themayor.eu/en/a/view/small-town-belgium-introduces-bikes-for-people-with-disabilities-10636

Bikes are more inclusive than ever in many countries. Why not take advantage of them, get some fresh air, have a great time and enjoy the amazing view. 

Life is short, go out there and get it

You can do it

     

         

Testing my limits

3.       Realizing my limits

4.       Positive mindset – change your self-talk.

5.       Educating family and other people about my limits

 

6.       The love of learning how to do things differently

7.       Educating others

8.       Listening to my body is powerful

9.       Pain is only pain until it’s reworded to discomfort. Then you can do the stuff you want to do

Recovering from a stroke can take a LONG time

 

Just when I thought I had it all together 😏

    Since my stroke I had developed an excellent routine in my stroke recovery journey. I began riding my bike that my husband who is a leading bike specialist in our area prepared for me; a good bike and correct positioning. I started small, I rode around the block, literally around the block maybe 2 kilometers. During my group rehabilitation, my balance was one side effect that made me lose my confidence in anything exercise related but improved with allied heath professionals encouragement. A bike for me was perfect and all of my allied health professionals were excited because they knew that it is an brilliant way for stroke survivers to recuperate. 

However, as per usual for someone like me, I took it too far after regaining my confidence and pushed the limits. 15 kilometers and climbing. I downloaded STRAVA and tracked my rides to watch my progress. With all my exuberance I noticed that when I rode past a certain length my foot started to go numb. Paresthesia This was confirmed by my stroke specialist.

This paresthesia progressed to pain in my muscles from them spasming. These spasms are small enough not to see them happen but enough for the pain to be real and eventually head up to my whole right side. EXHAUSTING. This took me weeks to recover from. Did I give up? DANG NO!!! I waited until I recovered, tested distances and found my sweet sweat spot and stopped there, I just ride that distance more often. 15 kms is just too far. 

Isolation feels like a safe place but you need to let people in to heal well.

Society loves perfection and if you're not looking perfect it can be easy to feel like an outcast. 

This page contains all things being human from the good, the difficult and the funny.

You need people who can make you laugh and keep things light

While I was in the ambulance on route to the hospital lights and sirens blaring, in the hospital bed listening to the tones and voices of the doctors, at rehab with my elderly mates, at home with my family who often do not take things too seriously and we all end up laughing at each other, to our animals who keep us entertained with behaving inapproapriately with visitors, I could find anything funny. 

    Paramedic: [holding up his index finger] what's this?

    Me: finger

    Paramedic: what's another name for it?

    Me: phalange

    Eldest daughter: [riding in the front seat] mum, can you be serious please?

    Me: what?

    Paramedic: is there another name for it?

    Me: haha what? [ aphasia had set in, I had no idea, I just thought it was funny]

In hospital I was identifying the doctors with characters on TV or animated kids shows so I called them by these names. So inappropriate but my husband and I thought it was just too funny how the resemblance to their look or accent was to the character, so dubbed they were. Resilience and coping in stressful life experiences can be achieved through humour, helping other people and positive self talk, the doctors didn't mind a bit. 

The nurses were brilliant too, most of them had an excellent sense of humour and if not I found their phopas funny. 

Humour is crucial for the success of neuroplasticity and rehabilitation

Don't let the behaviours of a few ruin your recovery path to a bright future regardless of whether you are fully functioning or not.

"You look so normal so everything is over then?"

Not everyone is going to say the things you need to hear, some will say things that will be hurtful, ignorant and just downright obvious but most people do not say these things to deliberately make you feel upset. 

Some friends, family, sporting club members, church goers, work colleagues and others in social circles want to say things that will hopefully aid in your recovery yet the delivery may come accross as anything but helpful. These types of deliveries can make the effort to go out, back into work, school, uni, social gatherings etc worse and can inadvertantly create a setback. So why is it so important to steer clear of negativity, passive agressive reactions and comedic puns at the recoverers expense?

Communication styles can be helpful in understanding why people behave the way they do.

All you need is love - but - choose wisely - If in doubt get out.

Why Neuroplasticity needs a caring, supportive and loving environment. 

Social support needs love not rules

For me personally I've already had experience in navagating re-entering society after trauma. I have experienced its diversity in how people reacted to me after a devastating life event. But there are skills that I learnt that I used again in my own stroke rehabilitation that may help to make re-entering life so much easier for you. It has taken me many unfortunate lessons to create this list but if it means someone else benefits then I'm good with it.

1.     There is no shame in asking for help

    

2.     It's perfectly fine not to answer the phone or a text

3.     You have permission to talk to one person at a time

4.     You can leave whenever you want

5.     Use your gut, if something doesn't feel right you can walk away

6.     Set boundaries - give yourself a timelimit, even if it is 10         minutes and or time of day -  you are in charge

7.     Being polite for the sake of it and listening to someone else go on and on is not okay

8.     If someone is making what you are going through about them, just say thank you, excuse yourself and go

9.     Take or make contact with someone you can trust and feel safe with incase things go pear shaped

10.    Find a place you can escape to, that is quiet and vacant if it all gets too much

11.    Listen to your body, if you feel tired go home

12.    Trauma can effect your nervous system, if you find sensory stimuli too much, i.e. concerts are too loud, the lights are too bright, clothes are too scratchy or the room is too crowded, you can arm yourself with strategies to help you.

• earplugs
• tinted glasses
• stand near the exit
• dress to suit your sensory needs

This YouTube clip is excellent in explaining how trauma gets trapped in the nervous system

Trauma and the nervous system explained

Please watch this next YouTube clip on understanding trauma. Strokes effect the survivor and those closest around them. If you or someone close is showing signs of immediate trauma try to start a conversation.

9 signs of unhealed trauma

If life gets too much, open up to a trusted person to help you make

contact with your doctor, hospital or help you make a phone call to any 

24hour online or phone service.

 

Lifeline  13 11 14

https://www.lifeline.org.au/?gclid=Cj0KCQjwof6WBhD4ARIsAOi65ajMEJbnLPybmLJ0YGcOzGlYRwC8VdohC1ARcZ3VSlVQ_IHTerPS7akaAgY9EALw_wcB

Beyond Blue 1300 22 4636

https://www.beyondblue.org.au/

Below is a table that you can use to document how well you are improving each day. Everytime you improve on your time you are creating new pathways in your brain. Hooray

Click on the links to see what to do and how to do them. 

*** always do the standing exercises with someones support if you need it***

    Rehab table click to download 

Neuro physiotherapy

Hand exercises

Hand exercises part 2

Leg workout exercises

Coin exercises

Balance and co-ordination

Card games for memory

7 Balance exercises using props

🥰 THANK YOU FOR VISITING MY BLOG AS A GUIDE TO HELP YOU ON YOUR SUCCESSFUL RECOVERY JOURNEY 💓

We are fearfully and wonderfully made - The gift of neuroplasticity

 Do I really have to go to rehab?

In one word - YES

Depending on what part of the brain was effected and what side, stroke affects EVERYTHING!

While I was in the accute stroke ward I was monitored 24/7. What does stroke effect?

https://www.neofect.com/us/blog/understanding-the-brunnstrom-stages-of-stroke-recovery

• Blood pressure
• Oxygen saturation
• Blood sugar levels
• Heart rate
• Pupil dialation - vision
• Paralysis on one side
• Speech
• Anything sensory
• Emotional stunting and disregulation
• Memory
• Balance
• Spasticity - muscle spasms due to the brain misfiring to the paralysed muscles - this hurts

Everything on this list I was effected by, yet the brain is incredible. IT ADAPTS

https://www.hopkinsmedicine.org/health/conditions-and-diseases/stroke/effects-of-stroke#:~:text=Right%2Dsided%20weakness%20or%20paralysis,organize%2C%20reason%2C%20and%20analyze%20items

As soon as I was given the green light I was told to get out of bed and start moving. 

So move I did. BUT I was also doing things while lying still in bed that also added to working my brain. I played games on my phone. 

This worked my:

1. concentation
2. co-ordination
3. processing speed
4. muscle memory
5. muscle strength - this was hard because I couldn't feel my finger hitting the glass on the phone and I had to hit hard for my brain to send the right message to my right hand.

https://rehabandbeyond.org/rehabilitation/video-game-therapy-for-stroke-and-brain-injury-survivors/

Rehab and group therapy - worth every second

No one is going to understand what you are going through except those who are going through the same thing!  

What happens at rehab in an outpatient setting?

Basically - with the supervision of nurses, occupational thearapists, physiotherapists and social workers - you are relearning how to do everyting again and building new pathways for your brain to send messages to your body bypassing the damaged areas that were effected by the stroke. This is - Neuroplasticty - at least 8 weeks

Every week, twice a week you need to get stronger, faster, last longer and smash a personal best. 

Does it hurt? sometimes

Is it worth it? Yes a million times - DO NOT GIVE UP

 Balance and stairs for balance and                                                              strength

 Co-ordination and balance and Ergo for                                                       arm strengthening

 Building muscle

Next blog: The benefits and pitfalls of social support. 

Feel free to share to help anyone who may benefit from stroke and stroke rehabilitation.

Can someone tell me what's going on? Stroke investigation

Tests, watching and monitoring

From the moment the symptoms were clear, I was packed up and rushed into another ambulance with lights and sirens to a hospital that was equipped for monitoring and emergency surgery. There was a lot of waiting, watching and 24 hour monitoring of my vital signs. I was hooked up to multiple machines that took my blood pressure, oxygen saturation, injected blood thinners and took my heart rate. I lay straight with my bed head lifted in the low Flowler's position to avoid blood rushing to my brain. I was told, "Don't move!" for anyone who knows me, this was hard. I did what I was told, I didn't move. 

https://www.heart.org/en/news/2018/05/01/head-position-after-stroke-up-or-down#:~:text=HOUSTON%20%2D%2D%20Keeping%20the%20head,suggests%20it%20may%20not%20matter.

Trauma, fight or fight and crowd staring.

The trauma of a sudden stroke at a young age affects everyone. From my eldest daughter who calmed her nerves to serve me when assessing me and the hand over to the ambulance officers, to my middle daughter who rested her head on my chest in the trauma room sobbing, to my youngest who carried my weight to the car. The one who I think has suffered the most is my husband. He did not leave my side.

https://www.beyondblue.org.au/

https://enableme.org.au/community/strokeline

At 3 am in the morning I woke to the monitors alarms going ballistic. My leg was uncomfortable so I tried to get the blanket off my foot. My husband asked to help me, "no, I really want to do it myself." My blood pressure rose to 175, my husband raced off and an intern rushed in. She asked questions for me to answer but I could not move my mouth. I knew exactly what I wanted to say but I couldn't say it. My right side started to fail again, I began fitting from my legs up. My heart rate went through the roof and I was breathing heavily. The curtains dividing the beds flung open and I had a crowd of at least 10 doctors staring at me with the red cart. THEY JUST STARED!!! Although they were NOT JUST STARING, they were preparing to go into action as soon as the team leader said so. The threat of having a second stroke was raised.

https://trauma.reach.vic.gov.au/guidelines/teamwork-and-communication/trauma-team-structure

https://www.stroke.org/en/life-after-stroke/preventing-another-stroke/recognizing-a-second-stroke-and-making-an-emergency-action-plan

Apraxia

https://www.hopkinsmedicine.org/health/conditions-and-diseases/stroke/effects-of-stroke

https://www.healthline.com/health/stroke/seizure-after-stroke#:~:text=If%20you've%20had%20a,you%20to%20have%20a%20seizure.

Miracles can happen when no one is watching.

With the instruction of a young empathic intern, I was rushed off to another CT scan. Compassionately picked up like a wet bag of cement and flopped onto the trolley I was left the room by myself. My right arm was missing, I couldn't feel it at all and I could hear it flopping onto the side of the trolley so I had to grab it with my left hand. The panic subsided, I could sense an intense peace. Hang on, "no" I am not ready to go. The sense of an NDE is something I don't wish on anyone. The sounds of the CT were changing from whirring, clunking, whooshing and spinning. I focussed on the noises and the lights gently flicking around my eyes. Focussing on something other than on panic or fear inadvertently redirected my brain pathways and I relaxed into a state of calm then I was sent back to my ward leaving the doctors confused with why I crashed in the first place. Total mystery. The next morning I woke to being back to normal, I could feel and use my right arm, I spoke albiet I sounded drunk and my husband was asleep in the chair next to me - I was able to turn my head. Miracles happen when no one is watching!

https://www.cnbc.com/2017/08/14/steven-kotler-explains-how-to-turn-anxiety-into-focus-in-3-easy-steps.html

https://www.med.umich.edu/1libr/Stroke/StressManagementAndRelaxationAfterStroke.pdf

Why did I have a stroke at such a young age?

Stroke is increasing in numbers every year for people 54 and under. This year 24% of Australians have suffered their first stroke before 54. A stroke occurs every 19 minutes and that is alarmingly predicted to grow. 

            Get to know your body and anything that is not normal 

for you get it checked by your doctor, if you still have a 

nagging feeling, get a second opinion. 

https://strokefoundation.org.au/media/juuba3qm/no-postcode-untouched-30-october-final-report.pdf

Risk factors for stroke:

https://www.betterhealth.vic.gov.au/health/conditionsandtreatments/stroke-risk-factors-and-prevention

Anyone can have a stroke

even babies

Next blog

I will continue to educate on rehabilitation and the gift of 

stroke rehabilitation group therapy and social support.

The road is long but you're not alone

 What type of stroke did I have?

Early this year on a day when it wasn't torrentially raining, I went bushwalking with my husband and our dog. The sun was warm on our backs, the birds were grateful for a break in the rain, chirping happily but the soil was sodden and there were leeches everywhere. We both thought it was both revolting and hilarious that these leeches were reaching up to hitch a ride on our shoes. Yuck, I screamed like I was getting attacked by miniture monsters. I reached down to flick one off my shoe with a stick, turned my head to see where my husband and my dog were and felt something strangely odd in my neck. I stood up to what felt lilke I had moisuriser leaking into my eye.  There was no sting; only blurr, like my vision was pixilating in my left eye. This was the exact moment my left artery in my neck tore in the middle section, there were no other symptoms - Yet. Stroke type - Middle Cartoid Arterial Dissection

https://www.neura.edu.au/health/stroke/?gclid=Cj0KCQjwzqSWBhDPARIsAK38LY_KmKFK08bJi2fsKAeC8r6n9Ywgaf4GvPtqIVReCBTGb5P4kDz3dvYaAk7mEALw_wcB

From bushwalking to uneasy feelings.

We ditched leeches, the endless mud and slippery moss for stable ground on the bitumen road back to the car. With a slight etherial feeling filling the air (acutally my brain but I didn't know it) a mild headache began to build. I thought nothing of it, put it down to the experience of fighting muddy minature monsters. Both hungry we stopped at a cafe where our labrador was welcome to join and sit under the table with a bucket of water and a good sleep. My breakfast burger was greasy yet yum, I put the sickly feeling in my stomach down to the bacon and a sugar filled bread roll. My headache was still present but not too bad, I have a very high pain threshold so thought nothing, literally nothing of it. My left eye was still blurry, no pain, no sting, nothing. I commented on it to my husband while rubbing my eye testing to see if it would just right itself. 

https://www.stroke.org/-/media/Stroke-Files/Lets-Talk-About-Stroke/Life-After-Stroke/Lets-Talk-About-Stroke-and-Vision-Sheet.pdf

A nanna nap could have been the end of me

Headchaes are not uncommon for me neither is tiredness or lethargy. Naps are a daily routine and a ritual that is predictable. I mentioned when we arrived home that I was going to have a rest. Swallowing 2 nurofen I lay down with my left eye still blurry and fought my body to rest. Something, no, someone much bigger than me I'm sure of it, stopped me from falling asleep that day. I rose off the bed because our youngest had mentioned that she wanted to spend her hard earned money at the shops before school the next day. She had been asking for days to go so I couldn't let her down. I pushed myself passed the lethargy and growing sense of dread. Hopping in the car I drove us to the shopping centre and we walked and walked. I was getting more exhausted by the step.

Mum, why are you limping?

I have a tendency for pepetual optimism. It is a great trait although it can lead to ignoring danger. While buying tank tops, disassociation had well and truly set in. That feeling that you are here but not here, I knew then that this was the beginning of something awful. My steps were slowing down, my daughter in her excitement took off with my instruction. "I'll meet you there, I'm just a bit tired." Dreamy thoughts, slow movements and steps, starring into nothingness, I made my way to her destination. I sent her a text, wait, why can't I use my fingers properly. My fingers started to feel numb.  My daughter reached me puffed and showed me her purchase. I looked at her and whispered, "We have to go now, I'm not feeling very well." We made our way toward the stairwell to the carpark.

        "Mum, why are you limping?" 

"I don't know." From that moment my young daughter had to assist my every move until we reached the car. 

Miracles are interventions

The fact that our eldest daughter had studied the stroke pathway in her university nursing lecture the week before my own stroke is I honestly believe, no coincidence. I intsructed my youngest daughter to phone my husband, she put it on speaker and I tried excruciatinly hard to tell him what was happening but what I said and what he heard were two different things. Our eldest was home at the time, "put her on speaker, mum say that again." I said what I thought I said, "that's not right, she's having a stroke." with that very instant she was on the phone to the ambulance service. They both drove to where we were parked. Bolting out of the car, my amazing daughter, took my obs with her knowledge, used her phone light to check my pupils, asked me lots of questions and told me to complete a bunch of physical actions all while on the phone to ambulance service. Arriving in what seemed like a flash, they took over what our daughter had started. I couldn't walk or talk, the right side of my body started to fail. 

https://strokefoundation.org.au/about-stroke/learn/treatment-for-stroke/early-treatment-after-a-stroke

The end is not nigh

The journey from now on is hectic, without medication stroke survivors may not survive at all. There is a 3 hour window to avoid permanent disability or death. I am at the mercy of everyone, the only thing I have control over is the decision to recieve immediate thrombolysis that could save my life. I will continue to blog about my journey to help those who are survivors, carers, health professionals, allied health practitioners alike. The aim is to encourage, inform, educate and inspire for the promotion of stroke prevention. Please be kind with all comments and responses. 

https://www.stroke.org.uk/what-is-stroke/diagnosis-to-discharge/treatment#:~:text=Some%20people%20with%20ischaemic%20stroke,medicine%20is%20known%20as%20thrombolysis.