Today, for the eighth consecutive year I had the privilege of talking with[via ZOOM] future stroke clinicians.

Author portrait Brian A. Beh
Author portrait Brian A. Beh Stroke Foundation New South Wales
Monday, May 13 2024, 7:33PM

 

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Here are my Top Ten (Or so) Questions I have been asked during my lectures about my Stroke over the past eight years.

 This morning[at 9 am precisely, I spoke{via ZOOM} with Final Year Physiotherapy students at the Australian Catholic University, North Sydney Campus at the invitation of Associate Professor Simone Dorsch.

Joining me on the digital podium was Ms. Stephanie Ho, a fellow stroke survivor who also spoke about her stroke story, her rehab journey and insights, which to me is the epitome of courage and resilience.

This is the eighth consecutive year that we both have had this privileged opportunity. An activity I still regard as a rare honor and as I have stated frequently, a perk of being a stroke survivor.

 I estimate that I have met with[either via ZOOM or face to face] over 1,200 student clinicians at several universities throughout Australia since 2917.

 I have been invited to address students (via ZOOM unfortunately) at the University of East Anglia, Norfolk UK, where I am an investigator on two clinical trials on Post Stroke Emotionalism {PSE}.

                                                    Question & Answers Sessions.

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 At the conclusion of our presentations, we hold a Q & A. session which we both relish as it demonstrates the quality of the future stroke clinicians and their approach to their future vocation.

Over the years there has been many searching, well thought out questions and I have put together the Top Ten{Or so} that I have been asked.

For my lectures I utilize a PowerPoint presentation for approximately 45 minutes followed by 15 to 20 minutes for questions- such is the reaction we always go over time

The questions I have chosen cover a range of topics but in the main the theme (when looking at them) tended to focus on the impact of my stroke on myself, lifestyle, and my surroundings- which when you think about it is not surprising.

So now I present the Top Ten (or so) Questions.

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                                   You have mentioned that as a result of your stroke you changed in some                                             ways, however did you find that your family and friends changed towards you?

A good question that requires an honest answer!

Yes, In relation to my family most definitely - I, at the time of my stroke had been married for 45 years, so I was a bit like grandmother’s chest of-drawers”, solid, reliable, always there in the corner{figuratively speaking] and my family to be told on the night of my stroke by the doctors ’ he may not be going home” certainly changed their attitude towards me!

Don’t misunderstand me, I was a happy camper in my then current life, we had a happy household

The initial result when I arrived home (after four months) was to go to the other extreme- to try and wrap me in cotton wool, baby me- which was something I didn’t want- a perfectly natural result on their part. After a period of negotiation, we developed a happy medium.

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                                      You mentioned that your reading has been impacted by your stroke?

Yes, it has. Prior to my stroke I was a voracious reader, what helped was that when I was at school, I took a speed-reading course which meant I could read a normal size novel in about 90 minutes with an 85% level of comprehension. Obviously for business reading, I reverted to normal speed.

Since the stroke I can only read in  4 -minute blocks, then I must put the book down for about 10 minutes- which blows out my reading time!

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                          What was the most difficult challenge you faced in rehab?

Without a doubt. It is learning to walk again.

I had that task as the primary objective of my rehab plan. We take walking for granted, it is something we learn in childhood when the brain is functioning normally- but as a stroke survivor, when you are forcing the brain to find a new pathway to your right side it is a monumental challenge.

It was clearly the hardest challenge I have faced in my life. But I overcame it – with a plan and some amazing physios in Bankstown Rehab gym.

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                         Could you quantify some of the changes in your life after you left hospital?

Certainly could!

I only had the use of my left arm and hand, my stroke impacted the entire right side of my body, and I was right hand dominant, so there were challenges in my everyday life. Everything I did, every task had to now be done with my left hand, eating, shaving, dressing, tying shoelaces, etc.

Plus of course even though I walked out of hospital, I was mostly in a wheelchair, so I had to focus on my walking, building up the strength in my right leg.

My wife has to help me with showering every morning,

Fast forward to today my walking has improved dramatically and my wife no longer has to cut my food into bite size pieces. I can even butter my own toast!

Unfortunately, I cannot drive – I now travel on public transport, which is a perfectly adequate solution.

Mentally. I have changed- less driven, more patient. Less judgmental and sharp tongued. Sadly, I was [on occasions] not the nicest person to work with.

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                               What would your life be like had you not had the Stroke in 2016?

I'm convinced that my life would be dominated by health problems which would arise because of my sedentary lifestyle/smoking/diet and a lack of any form of exercise

It is not a subject that I like to dwell on, and I would rather concentrate on life and lifestyle that I'm living now. She understood and coild relate to my response.

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                            Why should I involve the family of my Stroke Survivor.

This question was asked by a student when I was talking about the clinician building and establishing rapport with the stroke survivor

A stroke survivor’s family is/will have to go through a period of change as a result of the stroke impacts. They can be your eyes and ears when you are not around and provide valuable feedback on your survivor’s progress.

They can provide motivation to the stroke survivor when they go home from hospital

if you think it's appropriate, they should be involved along with the survivor themselves in the development of a Rehab Plan so that they are aware of what survivor is about to undertake- to put it colloquially “they have some skin in the game”

They can provide motivation to the stroke survivor when they go home from hospital. In many instances they [the family] play a very key role in the ultimate rehabilitation of a stroke survivor. You should recognize their importance and involve them in the rehabilitation process from the very beginning.

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                          You mentioned a Mentor - It will help you - How? Even a Stroke Buddy.

 I mentioned this in a blog, and I had several questions about mentors, my response was as follows-

A mentor is a person who can support, advise, and guide you. It is someone whom you already know, a family friend or work colleague. Then again it someone whom you think could help you, but you don’t have a relationship with - then if you think this person could be a good mentor - Simply approach them,

In these situations, they will [if they need to} take the time to get to know you and the challenges you're facing and then use their understanding and personal experience to help you improve.

This relationship is additional to a manager or boss and benefits from a more personal and confidential structure. Mentors have the potential to become lifelong friends, or the relationship might only last until you've achieved a goal, there's no one size fits all.

During my career I have had three mentors, one a family member {my grandfather] and the other two were business acquaintances -a managing director and the other the chairman of a multinational corporation.

Each one helped me in separate ways.

I have had the pleasure of mentoring some people- all ages, ranging from young people who have just entered the workforce up to very senior executives currently completing the MBA [Masters in Business Administration].

The Survivor equivalent of a Mentor? Yes -It is called a Stroke Buddy!

That’s right, if you can get a stroke friend, someone whom you can talk to about your episode, your rehab. Even do your rehab together! It will help you- could be a friend, a mate, does not have to be a stroke survivor!

Try it-It worked for me!!

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Prior to your Stroke did you know anything about the causes of stroke and the after effects.

My reaction was “Strokes are for old people! And I was 68 at the time - in many quarters that is in the elderly demographic!

No, I knew nothing about the aftereffects of stroke! But I soon learnt.

Looking back and with the acquired benefit of hindsight I was destined to sustain a stroke - workaholic; sedentary lifestyle; a diet described by my doctor as an exercise in personal abuse; and the icing on the behavioral cake – a heavy smoker.

Stroke is one of those medical episodes that we become wise about after the actual event. We must change that attitude- for the betterment of society.

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                                Was it hard having to learn to walk again?

Learning to walk again was one of the hardest tasks that I have had to undertake during my rehab, in fact in my life. And yet it would appear to the uneducated eye so simple- it to me demonstrated the complexity of human experience.

As clinicians [students] you are aware, that (to me anyway) the process began by breaking down what was formerly an instinctive act into a series of interrelated steps/stages., the focusing on those steps

After some 6 weeks of doing those routines (sit to stands, thousands of repetitions on the knee extender, building up my strength in my damaged right leg, stepping) I was ready to take my first steps.

Picture the scene of me with a physio with my wheelchair behind me, one beside me and one in front in case I tumbled. And I managed to shuffle about ten metres.

After that momentous day, there was no stopping me-I had made an objective to walk out of the gym on my discharge day, and with the skill of some amazing clinicians,

And I DID.

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Because you are so driven did you ever have to scale back your rehab or were you ever told you were being unrealistic in your rehab plan?

No, never.

Yet on several occasions I was confronted with a degree of skepticism by the doctors about my rehab objectives, for example I was told by a doctor that, in his words “It is highly likely you will ever walk again”

When I announced in my first week in rehab I would walk out on discharge day, that was met with a degree of derision. Yet I proved them wrong. I refused to allow their attitudes to temper my motivation to overcome my deficiencies.

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                         Were you worried about whether you would survive your stroke?

That is a good question and requires an honest answer!

No, I was not worried at any stage of my treatment/rehab- in the ambulance; in the ED or when I was transferred to the Stroke Ward. I was in no pain, the treating doctors in the ED were calm, professional.

Nothing seemed to make sense-Armageddon was happening in my skull, yet I was unconcerned as I lay on the bed with a crowd around me. I knew I was having/had a stroke, but it did not mean anything at that time.

I hope that makes sense, I said to the student.

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                     You seem to enjoy what you do! Why do you do these presentations?

Again, a good question!

I am no stranger to public speaking, I have in my corporate life spoken at what seem [to me anyway] countless conferences, industry conventions- the one that stands out in my mind is to an audience of 7,000 at a Financial Services Conference in Boston, Mass.I also have coached executives in presentation skills[ public speaking] and dealing with the media

Couple this with my desire to “Give back’ as a means of repaying the clinicians who were responsible for my rehab, I will NEVER refuse a request to talk to stakeholders in the Stroke landscape.

The thanks and feedback that I receive from these activities is humbling and amazing -I talk about one such event in this clip- Why I do what I do. This was recorded in 2021 and is still relevant today.

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         You are involved in a lot of research activity surrounding stroke. Is this satisfying for you?

Good question, yes, it is very satisfying for me, it is part of my Giving Back strategy whereby I attempt to repay those clinicians who helped put me back together again after my stroke.

Currently I'm involved in nine research projects, clinical trials both here and in the UK.

And a pleasing aspect is that I'm now being invited to be involved in clinical activities outside the scope of Stroke where I can put my corporate experience to even greater use. I talk about this in my recent blog 'The Downstream Effect of My Stroke”

 

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You mention your ongoing rehab journey. Do you ever see that journey coming  to a completion?

Good question, as I have described a stroke rehab journey is different to a sprained elbow or a dislocated finger- all of which have a sunset clause. With my rehab I describe it is a long and winding road , so I will be doing my rehab routines for the rest of my days. That’s why I have integrated them into my daily life

 In my blog I wrote to mark the eight anniversary of my stroke, I outline the current challenges[opportunities] that I encounter on a daily basis which require an ongoing commitment to daily rehab.

It is indeed a long and winding road- but it is a journey I look forward to.

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Your blogs are very interesting, and do you have a Favorite? How long have you been writing- you seem to have a talent

Thank you, I am glad you enjoy them- most of them are stroke related and detail my journey, my learnings, and insights, so that stroke survivors and clinicians can learn something from my Lived Experience - that sounds a bit presumptuous on my part. but it’s not meant to be!

In terms of a Favorite, that difficult, because at the time of writing the one I am creating was my Favorite, but after some thought, I would have to say the one titled "My Desire for Solitude is special for personal reasons. Followed closely by “A Long and Winding Road’ and the poem” Friends of My Morn”

I started writing poetry when I was about sixteen, the odd essay and have had several published eons ago. Since I retired and my stroke it has become a significant and relaxing pastime.

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                                Music is also important in your life - Am I correct?

Spot on! Music is particularly important; it gives me the opportunity to drift away for a while, helps me relax whilst I write. I have an eclectic taste- from the British Invasion of the sixties, opera and at this very moment I am listening to some amazing Russian Choral Music.

My Favorite contemporary is Robert Zimmermann, (AKA Bob Dylan), my Favorite classical piece is Beethoven’s Pastorale Symphony.

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                       Has the stroke changed you and if so in what way?

The stroke has definitely changed me.

Firstly, my lifestyle -I have discarded/eliminated what I would term high risk behaviors smoking, I was a heavy smoker, 20-30 cigarettes per day; I no longer drink sugar-based drinks [previously 3 - 5 cans of coke per day, I now consume approximately three litres of water per day.

I now have one coffee when I wake, as opposed to several during the day pre stroke, which were described as having the ability to euthanize a rather large farm animal.

I have spoken about my walking routine- 12 to 15 kms every day and having integrated my rehab routines in my everyday life.

I am fitter and healthier than I have been for years!

As a person, I like to think I am more patient, less arrogant, driven and demanding. I am now aware of the consequences of having a sharp, sometimes sarcastic demeanor on my workmates and fellow acquaintances. A lapsed workaholic is one description  a mate whom I respect described the Post Stroke Brian.

So, in short yes, I have changed and for the better

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You mentioned that you have changed spiritually as a result of your stroke? Please explain.

That is an exceptionally good question and as I promised to answer all the questions I shall explain. I grew up in a traditional Anglican home and like many of my generation rejected during my teenage years the teachings of this church

Since my stroke I have become aware of the fragile link between this life and whatever lies beyond it and because of my medical episode I've become more curious about the answers.

As a result, I'm looking towards the Eastern faiths and Judaism as a means of obtaining the answers to my questions.

Readers of my blogs will often see me say ‘To keep moving towards Enlightenment because that's where the answers do bide” I believe that.

Thank you for that question. I really appreciated the opportunity to talk about it as it was a definite residue of my stroke.

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You mentioned in your talk today that you were a child of the sixties. What does that mean and how did it impact you?

Again, a good question.

The sixties. [from 62 to 69] was a time of profound change for teenagers, but it's not only music, fashions social attitudes, the growth and realization that young people were a force to be reckoned with in this world

You must recall that much of society was very conservative and strait laced. I must admit thrill seekers and fellow time travelers for a young lad growing up on a dairy farm in the Hunter Valley, I embraced it totally.

I'm not afraid to admit I smoked those funny cigarettes and unlike many politicians who claim otherwise I inhaled and as a result experienced some amazing sunsets on Newcastle beach after a day's surfing in the mid to late sixties

Looking back, I would not have swapped it for any other generation or the experiences of that. These days made me the person I am today -slightly irreverent and tilting at the odd windmill

Thank you for the question.

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How do you still stay motivated eight years after your stroke?

That is a question that I have been asked several times previously. Once I realized [early on], that the rehab process would be quite long, I adopted a ‘marathon’ mindset - what that means is that I set myself some long term, realistic, relevant, and measurable rehab objectives. Then I settled in for the long run. And it seemed to have worked.

 My blog ‘My long and winding road’ outlines the time frames involved. As you can see Thrill Seekers and Fellow Time Travellers, I am quite a ‘numbers nerd’

 Remember nothing is more motivating than PROGRESS - To see you are getting stronger, fitter, able to do those tasks that were rudely stolen by the stroke. That's what has kept me motivated

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  Do you ever worry about having a second stroke?

 I now exercise and enjoy a Stroke friendly diet and importantly I have a stroke friendly mental attitude I have realized that I you cannot eliminate the chance of a second stroke, but I have reduced the chances of it occurring.

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Do you often think what your life would have been like if you hadn't had the stroke?

My daughter asked me this question some weeks ago and my answer was now I have accepted my post stroke life and look forward to the rest of my days. I have accepted the fact that I cannot drive so I use public transport.

So rather than looking back I look forward to the future- much healthier! The past is past; you cannot change it; but you can learn from it.

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                            Can you tell me about your “special place” that you often go to?

This question came from a reader of my blog, in which he told me about his special place, where he practiced Pilates.

My special place is a bench in a park on Lambert Ave, Panania. On my afternoon walk I will go and sit by myself on this bench for about 45 minutes.

It's where I isolate myself to a certain extent from the business of the day; the noise of suburbia and just focus, on what's going on in my head.

Be it a task or some of the many strokes’ projects/a blog or poem that are swirling around in that creative morass I sometimes call my brain.

It is that little break that we take where we can be with ourselves. I highly recommend it. It is very therapeutic and then at the end of it I get up I go back into my reality.

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                                               What makes a Good Stroke Clinician?

I was lucky - the interaction with stroke clinicians in Bankstown hospital was exceptionally good. What made them good? Well for a start they were always there on time ready with my rehab every morning with a smile and a” Good Morning”.

We spent 5 minutes gossiping about football or some other topic which was all good and helped build the rapport.

Then when we got into the rehab schedule itself, they were professional, they adhered to the plan that we had agreed on.

They ensured that I did all my exercises, stroke repetitions in accordance with my rehab plan; they continually gave me feedback and encouragement; and the end of the day both parties went our separate ways knowing that we were achieved that day’s targets

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                     You talk a lot about Lived Experience-Why is it so important to you.?

Again, another question following my blog on Lived Experience the perfect trifecta. Anyone who has attended my lectures or read my blogs should be aware of the role that Lived Experience plays in stroke research

Any stroke research undertaken with an absence of Lived Experience runs the risk of being a theoretical talkfest. I may be naïve with this statement but the longer I work with clinicians and researchers the stronger my passion for the involvement of Lived Experience.

 

For me there are no better examples of this philosophy in action than Associate Professor Simone Dorsch from the Australian Catholic University, North Sydney, a Director of StrokeEd, a clinical collaboration and Professor Coralie English from the University of Newcastle, a leading stroke researcher.

I have had the pleasure of working with these outstanding people- in fact it was a chance invitation from Simone in Bankstown hospital to address her physio students at the ACU in 2016 which was my introduction into Lived Experience- the rest as the adage goes is history!

Yes, Lived Experience is important always was and always will be.

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When you were being taken in the ambulance to the hospital were you scared or worried? Did you feel any pain?

No, I did not have any pain at all. I just had no strength in my entire right side, I could not talk

it was like an out of body experience.

During my trip in the ambulance the paramedic told me that “when you get to the hospital you are going to be famous” meaning that there would be a lot of people around me in the Emergency Department however he said “Don't worry there all they are all going to help you get through this ”“You’re lucky you're going to Bankstown hospital- It is one of the best in the business for the treatment of stroke”

When I arrived, it was like he described, I was floating in and out of consciousness and to me it was the perfect example of organized chaos

I remember certain parts of it - going for the scan, being injected with the Clot Buster and then I woke up in Intensive Care, where I spent 3 days.

Incidentally, my BP peaked at 228/182 – a record which I would rather not have!

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                               Has the Stroke changed your attitude to your mortality?

This question was asked by a close friend whom I had not heard from for several decades but had recontacted me after they had heard of my health episode

I must admit that it did set me back on my backside because it was not something that I would have been expecting to be asked. In truth I did think about it privately, so I will share with you the exact answer that I gave the person involved

In terms of close shaves, I've had three of them in my life.

The first was when I was eight years of age, I had a serious accident on a tractor on the farm I fell under the rear wheel of the tractor and the tread scraped my skull to the point that I have tyre tracks indented in my skull and a distinctive scar on my left hand.

The second time was in 1988 when I was working at about 150%, I had an episode with my heart and the third time was a stroke in 2016.

The first one I was too early to appreciate what happened; the second time I was too busy to understand the ramifications and ignored it.

But the third time was different.

It made me realize how tenuous our hold on life is hence I guess the reason I have become so committed [ some people say addicted] to my rehab is I've run out of chances, so I don't want to chance my luck the next time

Until Next Time

Thank you for reading my Questions and Answers.

 

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Brian A Beh, Stroke Survivor, Advocate, Investigator and Lecturer

Lived Experience Stroke Researcher

Life Member of the Hopalong Cassidy Fan Club

Poet, Philosopher and Child of the Cosmos

Survivor of the Sixties

Winner "Improving Life After Stroke" Category

Stroke Foundation of A

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