Be patient with your recovery; take the time!

Be patient, it takes time to come back from any sort of brain injury, or even to find the point of balance that becomes your ‘new normal’.

I fought like hell to get back to work after my haemorrhagic stroke.  I couldn't sit at home, essentially feeling like I was under house arrest, prevented from contributing to the world and the environment I had been helping to to shape.  I wanted to go back to work.  I was bound and determined to demonstrate that there was nothing significantly different about me, my memory or my cognitive abilities.  I fought to get permission to walk back in the door after only seven months.  I started back on a phased, part time schedule, which included being given the opportunity to travel to Florida for a conference.  After much confusion about how to 'track' my time and negotiation with the insurance company, I was then put back on ‘active’ status nine months after the incident.  I think it may have been better if I had waited out the full year.  That is what many of the doctors and therapists use as a rough guideline.  Take the year!  Don’t rush it.

I found that at the one year mark I could feel a profound difference in my vision, my balance and most of my cognition and attention span.  It was almost like a switch was thrown somewhere in the circuitry of my brain.

It isn't perfect yet.  How much of it is simply my age, which some doctors seem to take great delight in teasing me with, and how much are the residual effects of the brain bleed?  I don't know.  And it is the not knowing that truly disturbs me.

I’ve discovered that emotionally I haven’t always been ready to take my place at the table for the meetings that are an integral part of my job.  I've also discovered that cognitively I may not be up to the tasks I really want to take on.  It’s not that I can’t do them, I just can’t do them as fast.

So what does the ‘emotional’ part mean?  Well, to be fair, I've become very grumpy in some circumstances.  I react with ‘glib’ responses if I'm not functioning as quickly as I’d like.  In fact, I've been downright rude, and combative at times.

Sure, I'd like to find something to blame this on, and in truth there were extenuating circumstances with my return to work that are handy for hanging responsibility on.  While I was away, my peers had parcelled out parts of my job that they felt comfortable doing, and then were extremely hesitant to give the pieces back when I asked for them.  I felt like I’d lost ownership of the job, especially the parts that I felt most passionate about.  And even as this was happening, or not happening as the case may be, we got a new boss whose first introductory statements included ‘reorganization’, ‘reclassification’ and he actually presented a laundry of staff to the management group that he intended to have removed from the organization.  To his credit, he showed concern for my health, encouraging me not to rush things.  His concern for my well-being was genuine, I believe.   In my already defensive posture I interpreted much of what was presented as evidence of his kid-glove approach, especially the parts where he left me alone while working closely with my peers to hammer out a new strategy, were platitudes of condescension.

On balance, when I look back at how I feel, I spend way too much of my time being angry.  It is totally possible that this is a side effect from the stroke and part of my recovery, but it is also possible that my brain chemistry has changed.  It’s gotten to the point that I'm not sure that I like the person I’m becoming.  I'm an unpleasant, combative old man too much of the time.  If I'm engaged with what I’m doing, and success comes easy, or the conversation fits with a part of my world view, then everything is fine.  Any sort of deviation and my mind starts locking in on certain thoughts and phrases that ricochet around the vacant the corners of my mind, spilling out into the real world at inconvenient and inappropriate times.  Calm acceptance of circumstances beyond my control has become a struggle that I'm not used to.  I have to consciously throttle thoughts and reactions.

I have been experiencing deep sadness, skirted the edges of anxiety, and generally become quite concerned about my mental health.  It reached a point where I went to my doctor to get some medication to help even out the roller coaster ride.  He prescribed something, but after reading about the drug, I became fearful of starting them.  In my lopsided view, I need quick fixes, not a protracted course of treatment that starts with a full two weeks of taking a drug before any effect would be seen or felt, and then would require a month or more to come off the drug safely.

I made a decision; I'm going to do this on my own.

We’re kick starting an exercise regimen, we’re watching our blood sugar closely, ensuring that we’re eating proteins on a fairly regular basis, and we’re cutting out the drinking as much as is practical.  No more scotch for a while, just to see if we can identify a difference.

Negotiating the back to work protocol

Well, I am happy to report that there have been some real successes in the last couple of days! Two of the key successes are that a) my certain people on my rehab team are actively negotiating a graduated return to work protocol, and my employer is embracing the parameters and the graduated return to work plan. So now it's full steam ahead.  My employers’ HR team has a return to work specialist  who will have the job of convincing the provider of my Long Term Disability Insurance that this is a good idea at this time.

I'm not entirely sure how they measure success in a situation like this.  How do the rehab specialists know that I'm able to do my job when they don’t know my job, and have no baseline measurements to use to evaluate my effectiveness.   One of the things that will end up having to do is to build out a structure that they can measure my progress and ability to do the job. What does that mean? I don't know. It's going to be about being able to demonstrate that I am effective at doing my job.
My return to work is being designed as a graduated return, in that what we will do is plug me into my job for four hours twice a week to begin with.  Then we will evaluate how I'm doing and then move to three days a week four hours a day and then just keep building on it until I'm ready to assume my full duties on a full time basis.

Consider Managing Your Own Recovery

Well, I will admit that I am beginning to get tired of all of this.  I want to go back to work, but I am having a lot of trouble getting traction with the medicos who are in charge of my care.  I don’t know what comes next.  And it would appear that the team that is supposedly managing my recovery from the stroke doesn’t know what comes next either.  In conversation I have discovered that the ‘team lead’ apparently hasn’t taken the time to map a course of action, or just hasn’t bothered to communicate it to the team.  The prevailing answer to all of my ‘what comes next’ prodding is usually some vague ‘everyone is different’ generality.  Even my case manager with my insurance provider offered up the same generality in defense of the rehab team.  The case manager has offered to bring one of their rehab specialists into the conversation to help focus our disconnected efforts.

Now to be fair, I finally did get a meeting with the team lead, a Physiatrist, who has agreed to send letters to my family doctor and to the social worker who is the interface with my employer, with a recommendation that we start discussing a graduated return to work.  What does that mean?  I truly don’t know!  Is this rehabilitation specialist with the odd designation of Physiatrist actually saying its time to go back to work, or is she saying that its time to start talking about it.

One of my expectations of the medical profession is that they will actively participate in my treatment and maintenance the same way a good car mechanic participates in the upkeep of my vehicles.  The mechanic tells me how to keep the vehicle running well, and expects me to stop in for an oil change and a diagnostic look-under-the-hood every once in a while.  When I bought the vehicle, he presented me with a plan for maintenance.  When something goes wrong, he proposes a course of action, and then executes on it when I approve it.  If there is something that runs contrary to government regulation he keeps me both safe and legal by insisting that the work be done.  Now when I have a medical challenge, I expect the same.  I get much of this from my GP (general practitioner, family doctor).  My GP is brilliant!!  He is very good with me, with my wife, with my kids, and now with my grandkids.

Stroke recovery is a tough one.  There doesn't seem to any sort of formulaic 'one-size-fits-all' recovery strategy or methodology.  With a cancer diagnosis, you can be pretty sure that there are certain protocols that will be followed, and that your doctors will give you some good timelines and timeframes to help you understand and plan and to help put things in perspective for your caregivers.  You know going in that there may be surgery, that there may be chemo and there may be radiation therapy.  But you still need to take a measure of control over the details.  The challenge with recovering after a stroke is that it doesn't fit any formula.  Each incident and each patient is different.  No one is about to say that the recovery path for a haemorrhagic stroke will take six months, or a year, or any sort of time frame.  But what is especially frustrating for someone like me is that many of these teams won't even be able to offer a course of treatment/rehab in any logical or concrete way.  They aren't going to say, for instance, that they will work on your cognitive functions for a six week period, after which they will test, and then determine the new direction.  they just don't know enough or have the manpower to work it through.  So, like reacting and recovering from a cancer diagnosis and treatment you as the individual and your primary care givers need to take a measure of control over the details.
  The Canadian Stroke Foundation website is a great resource to help you and your family manage your recovery.
 I, unfortunately, put too much faith in my assigned rehab team and didn’t bother to spend too much time mapping out my own road to recovery strategy.  Now I need to put something together and make it happen…

Command and Control culture doesn't translate well...

The Command and Control culture that is the military, that is law enforcement and to a lesser degree that is fire fighting's backbone has severe limitations when applied to organizations that require innovation and transformation to thrive or even just to survive.  In spite of what the gurus over at the Harvard Business Review have to say, the Command and Control culture cannot be layered over the existing culture of an organization successfully simply because the new CEO/CIO/CFO/COO is from another organization with a long standing Command and Control culture.  It doesn't seem to matter what post graduate degree they've got tucked under their epaulet regardless of how it was supposed to compliment the braid and embroidery.  The very notion of a Command and Control culture background fights innovation and transformation when it is coming from the senior levels of management.  There are lessons to be learned from the Command and Control world, but when its unyielding dictums are applied too rigorously to those not already steeped in the culture the application spawns fear and loathing.  By all means let's find a place for experienced military and paramilitary leaders in the mainstream of the corporate world, but bear in mind that only a special few are equipped to take a seat in the C-Suite.

A thought for survivors

" I am not what happened to me. I am who I choose to become.”

—

Carl Jung

Living in my head and dealing with self-talk since the 'incident'.

There are a lot of rooms in my head, and always have been, but since the cerebral hemorrhage/stroke I have been taking inventory, visiting each of them to ensure that they aren’t empty, that everything is still there.  Oh sure, there is a certain amount  of disarray in the mansion that is my mind.  Its actualy quite roomy, and hasn’t been a studio type apartment for decades.  I haven’t really checked the place out for a while, so why would it surprise me to that  furniture has been moved around, and there are a lot of dust covered knick knacks and objet d’art, old books, music and odd little items that I had forgotten about that are demanding my attention?  There is  still so much more that needs exploring and re-examination to truly bring myself up to date on who I have become and how I got to here.  To be totally honest and truthful about it, I am spending way too much time in my head instead of getting on with the business of living my life as it is now.  And quite seriously, there isn’t a whole lot wrong with my life, even post stroke.  I’m not a stroked out zombie, even though I am still questioning part of my cognitive capabilities and ‘executive functioning’.  And of course, there is always the question of what to do about the ‘attention deficit’ which I continue to insist was there before the stroke.  If it didn’t or doesn’t hold any interest for me I have always been apt to promptly dismiss it, selfishly in some cases, and often the dismissal has been dependant on who was presenting.  The stroke has just become a convenient point for my family to leverage it, to be able to get me to focus on it without unduly riling me.  But as I explore the rooms in my head, I have discovered that I am easily irritated when disturbed.  My patience wears thin with the basic situation I am in.

Oh yes, and I do find myself obsessing about some things, like the status of my disability insurance claims and the technologies in the house that need updating and replacing, and the bloody awful weather, not to mention my dependence on family and friends to get around.  Complicate it all by stirring in the promises that I made to myself about what I would actually try to accomplish while I was off work, and the new dramas and traumas that are being reported to me by my team at work, and the antics of my darling wife’s family.  The frustration of my visual deficits just completes the distortions of an otherwise charmed life.

One of the core challenges with being off work, socially disconnected and forced into a situation that I have caught myself describing as being similar to ‘house arrest’, and the ‘living in my head’ is the temptation and the ease with which I can fall into patterns of negative ‘self talk’.

‘Self-talk’ itself is an interesting phenomenon.  I’m starting to think that self-talk is not that different than openly talking to yourself, the only difference being that at some point you cross the line to wanting to be able to speak it, and hear it, to understand the statements and questions you’re making.  So what is ‘self-talk’?  Well think of yourself sitting on the sofa watching television, be it the latest Ellen DeGeneres episode, or some sporting event.  At some point you get up to get a beer, or a cup of tea.  Normally you’d do this fairly instinctively.  Self-Talk is when you actually form the sentence in your head; “I think I’ll have a beer”.  It’s not about the getting up and getting it.  Its about the forming of the sentence in your mind that you then respond to.

I’ve heard the old saw that goes something like “at least when I talk to myself I know someone is listening, and I usually get the answers I want”.  But not all self-talk is as innocuous as it would seem.  Self-Talk in stressful situations and especially after a brain injury is your mind finding an alternate way to process thoughts and could be construed as a way that you are adding structure to your thinking by consciously forming the sentences in your head, that may never be spoken out loud.

As I wander through he rooms in my head, I indulge in the self-talk, often with statements like ‘well, that was dumb’, or more positive affirmations like ‘I can do better than that’.  But self-talk as a focusing mechanism has the downside of amplifying as well as focusing and in a lot of cases, we’re not at our best and we use the self-talk to focus on and amplify our less than stellar behaviours.  Remembering the assumption that we are the sum of our experiences, and that our core values and beliefs guide us through our day to day activities, self-talk latches on to those beliefs and values and can amplify and distort how we behave.  All that stuff that we have been internalizing over the years to help us move easily through the world and the way we interact with society and the people closest to us can become huge liabilities as we pursue recovery.  Our basic thought processes which are guided by our internalized learnings become the basis for self-talk which then become the situational reactions that those around us see.  On one level it becomes a bit frustrating because where we function perfectly well without self-talk on a regular basis, except for the occasional affirmation, when we’re ill, or dealing with the aftershocks of something as traumatic as a brain injury or stroke, we use self-talk a lot to get things back in perspective.  Is this the right approach or is it wrong?  I don’t know, but I do know that it has been helpful to me especially in the early days when I was coaching myself along the path to recovery, but now I’m finding it out of control.

Cognitive models basically suggest the following sequence and interdependencies.  So let’s assume we are presented with a ‘situation’.  Our powerful minds dip into our life experiences and teachings and sift through the core beliefs, learned responses and cultural biases to present the conscious mind with the automatic thoughts we’re used to using to move forward in the world, or with the language of self-talk to help us focus.  The automatic thought generation or the self-talk is a precursor or complimentary response to the overall reaction to the situation.  The Reaction is usually emotional, behavioural or physical.

The challenge with self-talk is that it both focuses and amplifies, and self-talk can then become very harsh and negative and can reinforce a slide into depression by amplifying anxieties.  We must maintain control.  Some of our beliefs and values about who and what we are may become unreasonable or unfair in light of a life changing event such as a brain injury.  We have to become flexible and compassionate about ourselves and our capabilities.

Buying a new car...Volkswagen in Canada, Norden Autohaus, and the Tiguan

We've recently had a most satisfying experience buying a new car.  We hate buying cars.  The experience usually leaves us angry and totally frustrated with the concept of 'commission' sales and extremely disappointed with the salesman, the sales manager and the dealership in general.  We've been 'burned' in the past and resolved not to go through it all again.  In fact we had threatened to make our son-in-law handle our next vehicle acquisition.

We've been dithering around this decision for the last year but we did finally decide that it was time to seriously investigate replacing our ageing Jeep Liberty.  Our Jeep has served us well.  Imagine our disappointment when we came to realize that Chrysler/Jeep had decided some years ago not to continue to make the Liberty but instead chose to produce inadequate products like the Patriot.  Hell, we might even have considered the Jeep Commander if we had determined that it met our needs as an urban four wheel drive alternate to the Liberty.  

We did our due diligence; we spent time trying to visit as many of the dealerships in our neighbourhood that had vehicles of the class and in the price range that we thought were appropriate for us. Even this simple act of window shopping was a huge challenge for us because of our schedule, and the severity of the local winter this year.  I do have to say that the arrogance of the dealerships that decided that they wouldn't be open on Sundays in a regional culture that supports Sunday shopping were all given a miss when it came down to the final decision making.  I mean, for heaven's sake; I can go spend thousands on furniture, electronics and almost anything in this community including a new home on a Sunday, but then you tell me I can't shop for a new car.  Somebody out there is out of touch with the reality of this community and region.  

So we did the research on line and especially with the help of the latest Consumer Reports for the 2014 model year and weren't able to get near more than two dealerships before we narrowed down our choices.  

Those dealerships that refused to be available on Sundays probably saved us from a repeat of the anguish and anger we've experienced in the past with slick sales guys, intractable sales managers and  the pushy business managers masquerading as finance guys with their incessant attempts to up sell on us on all the little things that have the most margin for the dealership, like extended warranties and rust proofing and upholstery conditioning and rock chip protection.  Quite honestly, if those items are so damned important but a vehicle manufacturer doesn't see that it is important enough to build it into the basic product then I don't want the product, as it is obviously substandard and what's worse is that their own sales and distribution network doesn't even trust the product. 

 Anyway after the analysis using on-line resources and the Consumer Reports documentation We decided to take a detailed look at and try to arrange a test drive of a suite of four choices; the Volkswagen Tiguan, the Hyundai Santa Fe with a quick look at the Tucson for good measure, the Toyota Highlander and the Jeep Cherokee.

We went with the Valkswagen Tiguan from Norden Autohaus.  The Hyundai product was a strong second choice, and in fact we might have considered the Tucson.  The Toyota Highlander is a lovely vehicle but a bit pricey.  We have no idea what the Cherokee is like.  Speaking of arrogance, what is with Chrysler running that massive ad campaign and then not providing vehicles to the dealerships to meet the demand?  Oh, and probably the tipping point that drove us away from the Cherokee was running into another of 'god's gift to vehicle sales' which didn't help the Chrysler/Jeep dealership's chances at at all.  We're very disappointed with Chrysler Jeep.

The sales team at Norden Autohaus were exceptional!  We'd recommend visiting them any time you are in the market for a vehicle, new or used.  Seriously.  give them a look.  they are part of the GoAuto network and they seem to work really hard.

So now in our garage we have two Volkswagens, being an EOS and a Tiguan, and then of course there is the obligatory motorcycle, while languishing out on the parking pad we have the Jeep Liberty which I can't quite bear to part with just yet.  Wait?!  What?!  The motorcycle isn't obligatory for a guy on the wrong side of fifty?  Who said?!!  They must be wrong.  Its definitely more important than a darned boat when you live this far inland and away from any decent lakes.  And those ATVs and sleds are just plain silly if you don't have some decent recreational property to tear up.

Taking care of the care givers can be costly...but it is worth the cost!! ;)

And while we all love the dedication and support of our caregivers, and quite possibly would not make it through all of the challenges we are presented with without them, we do have to be mindful of the costs involved in properly showing our appreciation for their devoted service.  For instance, my wife, partner, companion has been my chauffeur, always on standby, always ready to take me hither and yon, adjusting her own schedule and obligations to ensure that I don't feel too much like I am under house arrest because of the stroke and the complications of an unusually severe winter.  As payment and payback, especially given that celebrations of our wedding anniversary suffered and the usual valentine's day festivities were a bit stilted although I did manage to get out and get a lovely bit of lingerie for her, we dipped into our savings and inked a deal to replace an ageing and potentially unreliable  Jeep used heavily during the winter because of its 4x4 capabilities with a VW Tiguan AWD. On balance, it is a small price to pay...  ;)  And she does like our new Tiguan. 

What are you doing for your caregivers?  When was the last time you sent them out to a movie with their friends, or treated them to a mani-pedi, or even made the phone calls to have dinner delivered?  Give it some thought; how would your current life be without them?

And it keeps turning...

Well, in spite of the silliness of so many of the world's leaders, their inability to engage with the people whom they govern, and their clumsy interactions with the other leaders they absolutely must deal with, the world keeps turning.  Yes, well, we've got a volcano with renewed activity out there showing that the planet is developing indigestion likely from the antics of its parasites, and some pretty confused and confusing weather patterns.
But on the home front, things are becoming a bit more stable and the future is looking far less bleak.  We are exercising regularly, in fact it is becoming part of the routine, which coupled with the rehab efforts, including the continued use of Lumosity.com website's exercises, is by all reports, making a difference.  The potential for personal financial calamity is decreasing, and we are making some headway with the filing of benefits claims on the various disability insurance policies. I still question the bureaucracy that surrounds the way the claims are processed.

One of the high points of recent days are the Olympics, and Canada's medal count and the potential for continued success in curling and hockey.

On a more personal note, high points of the Family Day weekend included time with one of the grand daughters and the two grand nephews.  The visit with one of the grand nephews was made so much brighter by his introducing me to the world of Bey Blades. Wow; battling tops, revisited 40 years later!  So much fun!

I don't mind a challenge or two, but this morning we've reached the point of 'enough!'

I guess that just challenging fate by surviving cancer and working through the effects of this damned stroke isn't enough... the universe has to pile it on higher and deeper.  So, with the stroke comes the responsibility to tell the ministry of transportation that there has been a life altering change in my medical status.  I did that yesterday.  Now it's official; I cannot drive until the doctors sign off on my 'fitness' to get behind the wheel.  Let's layer on the mess with my disability benefits coverage for the mortgage.  Add the general embargo on 'working' which will eventually affect how I return to work, coupled with the unsuitability of my home work station to get done the writing that I really want to be working on, and the continued sense of being under 'house arrest' because of the loss of independence by being forced to rely on others to get any where and let's not forget to mention how the bloody cold keeps me and any relatively sane human being from just going for a quick wander around the neighbourhood to shake out the cobwebs.  Its actually been so restrictive that I haven't been able to get out to get anything for  Valentines' Day. You know, on balance, I think I can cope with all of that and I may even be able to contrive something acceptable for Valentines.  But continuing to sift through the other layers that the universe is piling on... G.'s family in the UK is having some significant issues, and she is emotionally affected, largely because she isn't there to help or to intercede, as the case may be.  Saturday evening while we were hosting some young friends who have returned from Wales to make a home with their three year old daughter here in Canada, an old friend of G's and part of a past life died in Vancouver.  There was of course the thankfully brief personal recriminations about not being there when she passed.  Now there is a bit of drama around the timing of the Memorial service, and how G. and the others who were close to the woman on this side of the mountains could get there.  Somewhere in all of this, my G. has gone missing.  Where is my G., the woman that I married and with whom I have lived a full and somewhat tumultuous life.  I miss the woman who was so full of joy that she practically pranced around the house being obnoxiously 'positive' and trying to find the good and the meaning in all that happens.  And then yesterday she was feeling physically beat, not just emotionally whipped, but her core ached;  she put this down to over doing it at the gym in the past week.  Her muscles hurt, and generally she had no energy and not much of a spark at all.  We didn't get out at all, which considering the cold it wasn't surprising that we chose cocooning, although it was more about be inactive than cocooning.  G. spent time on the phone with contemporary of her mother's who with her radiologist and slightly hypochrondriacal husband has lived here for a good 40 years, talking about the challenges they are facing with the real health issues he faces and the ongoing drama with one of her adult daughters.  Now G's sleep patterns are odd at the best of times, and only get more complicated with stress and anxiety, and so this morning it is truly unfortunate that not only did she not sleep well, but G. woke physically ill; nausea, stomach cramps, diarrhoea.  This now complicates the day.  She can't take me to the rehab centre, so we're scrambling to find me a ride there and back.  G. will also have to cancel her class at university, and arrange to do a make-up class for her 30+ students.  Add to the mix the drama of a friend who's car finally gave up on her.  This woman is a teacher with a horror for a principal... so she's gotta go and go now.  Well, G. isn't well enough to drive her to school, and I don't dare because of the license suspension that is pending.  So we lent her the Jeep for the day, which further restricts our mobility if something goes pear shaped.    By having lent her the Jeep we give up the child car seat that would allow us to rescue the granddaughter from daycare/kindergarten.  Our very pregnant daughter now has no real backup in case picking up the granddaughter becomes a necessity.  All of this just serves to reinforce the complexities presented by my inability to drive.  What happens when the next granddaughter is birthed?  How complex does it all get, then?  Well we did manage to arrange a ride to see my occupational therapist, and a ride home.  It really is time to work out a better, more reliable system for getting around.
I'm getting concerned... where is the joy?  I'm finding it a chore to be happy when the people who orbit my world are in such disarray and distress. This is getting tougher.  I find myself teetering on the brink of depression.  We can't afford for that to happend when G. is in such a state of anzieity so much of the time lately.  I'm gonna have to 'step up my game' and find some unique ways to bring the joy back to her.  When she's happy, I'm happy.  Gotta get this solved, and stop the petty dramas that interfere with with our journey.

Updating Disability Insurance Conundrums

This morning I had a phone call from a lovely sounding young woman who will be my Disability Insurance Case/Claim Manager.  It was a really nice chat, and quite informative with regards to how things may work going forward.  She is working on the approval and doesn't see any real challenges in the approval process.  One of the questions she asked  that caught me by surprise was her request that I describe to her the reasons why I shouldn't be returning to work right now.  Be prepared for this question. It felt a bit bit odd at first, but I’m pretty sure that she was just trying to make sure that the employee, employer and physician are all speaking the same language and with one voice.  I know that I was being a bit of a brat by encouraging her to reach out to my doctors to hurry up the neuro psych evaluation.  She countered with a request for a listing of all the appointments currently scheduled, which I gave to her verbally.  I think we’re good.  I am not concerned about the approval, and I believe that she is on my side in terms of getting me back to work as soon as practical.  She also seems to be genuinely concerned that I don’t find myself back at my desk unable to do the job, facing failure.  I liked her.

I still have one question which I am going to follow up on almost immediately;  the question of international travel while drawing disability benefits.  There is a requirement to inform the insurer if one travels out of the country.  I’m just really curious what that is all about.  It may be in the wording.  I will look it up, but it may have said ‘leave the country’ as opposed to ‘travel outside the country’.  The lovely sounding young woman got back to me on this.  The intent is not to restrict or prevent travel, but rather to ensure that when travelling accommodation is made for rehab, therapy, doctor's appointments, etc.  They are interested in protecting you, and your recovery, and then your long term health.  They will want your doctors to 'sign-off' on your fitness for travel.  This is a positive effort on their side.  Now to be fair, I did get the impression that this isn't about that quick jaunt across the border for some cross border shopping.  This is about long term excursions that will affect your rehabilitation and any ongoing monitoring by your doctors.

the other, more pertinent piece of information that came out of this morning’s conversation is that benefits payments are made once per month.  This may pose a challenge for some folks, myself included.  My current payroll structure is for pay checks every two weeks, so that I get twenty six pay checks per year.  Things like my mortgage and other payments are scheduled to be withdrawn from my chequeing account one or two days after scheduled pay days.  So now I'm going to have to do a ‘reset’ on how a few of those work.  I also did some calendaring and realized that there will be a gap between last pay check and first benefit payment.  Oops.  Could be tight.  S I began by calling the bank to speak to my Account Manager to look into things like changing the mortgage payment schedule and to look into whether or not and then how the disability insurance we have on the mortgage works and can get triggered.  I ended up talking to a gentleman from the insurance side of the banking house who discovered that when we renewed the mortgage a year ago the disability insurance got dropped.  We still have the mortgage life insured, but no disability insurance.  Damn!  We’ve done the math, and theoretically we will be fine financially with just the disability benefits from salary insurance, but it will be ‘tight’ while we adjust the way we live. I should mention that we are pulling all the mortgage documents to review prior to meeting with the bank, because we can’t think why we didn't ask for the insurance, and suspect that we did.  But we need to review the documentation.  interestingly enough we did get a letter from the credit card arm of the bank just the other day pleading mea culpa for not charging us for over a year for disability insurance on our credit card, but not to worry as they were going to be treating things treating things as if the insurance was in full force, and they won’t be asking for past premiums, but will be tacking it onto the monthly bill going forward.

Advice; right NOW check the status of your disability insurance on all your loans, mortgages, and leases.  Pick up the phone today and ask.  Don’t leave this until you actually need them, ‘cause you can’t qualify for the insurance coverage while you are on short term disability, or if you aren't actually working. Get this sorted out right NOW!

Later in February, leading up to and through Valentine's and Family Day weekend we've begun conversations with the bank about the insurance on the mortgage, the credit line and the credit card.  We're dealing with really nice people, but the hoops we're jumping through are getting just a wee bit silly.  From what I understand about insurance in Canada, and I do admit that I need to do a bit of research, but it seems like if you apply for and are refused insurance, or a claim is accepted or denied, the insurance provider registers their decision about you with a central insurance board.  This centralized organization maintains a file on you so that other insurers, or potential insurers can research and understand your history.  I understand the efficacy of doing this, so why hasn't the Insurance Board figured out a way to share more information from their central database amongst licensed insurers so that claims can be processed more efficiently and in a more timely manner rather than forcing claimants to generate reams of paper and demanding that over worked and understaffed physicians provide multiple iterations of the same information?  Now seriously, why couldn't we file all the pertinent information about my disability once, just once with that organization rather than having to provide separate blocks of paperwork to each individual insurer which is really just the same information presented in different manners and formats for each of the other insurers that we need to consult with to file for disability benefits?  At this time we are dealing with three different insurers; that's three sets of paperwork each saying the same thing, in slightly different ways.  That's also three different demands on the physicians who are trying to manage my care.

The question of privacy on the Internet and in this blog...

I was reminded this morning that this blog is open to the world.  I had three images on it which contained way too much personal information, so I have taken those images down, to be reposted when I can make a couple of edits to trim the more sensitive material from the images.

We've all heard the reviews about internet privacy, that once its up there, or out there, its there forever.  Obviously the big caution is for young women, for those interested in a career in politics, and anyone whose behaviours could be considered career limiting if they were widely known.

I apologize if you came to this blog looking specifically for those images.  I can only ask for your patience.  The images should be restored fairly soon, and with the appropriate narrative.  I must admit that I am finding it difficult to find the time to do this properly.  It will be done.

Thank you!!

Angiogram Was Scheduled for /Monday of this week

Well this should be interesting...  let's run some dye up through the femoral artery and then take some snap shots of the brain and dura and just see how well the embolization is holding.  I have every confidence that it worked and that its holding.

So we met a new guy for this procedure, a Dr. Rempel.  Nice, really nice guy.  Heck, all the teams I've run into at the University of Alberta Hospital have been really very nice.

When I asked the good doctor if I could get two 8 x 10s and four wallet sized copies, he took it in stride and did mention that I could get in touch with AHS (Alberta Health Services) and get them to burn a disk of my xrays.  This is something I will definitely be looking into.

Above image borrowed from
the Wikipedia image bank

There are warnings that go with any sort of invasive procedure, and you should read them and pay attention, and take them seriously, especially when it comes to the recovery period..  For a Cerebral Angiogram there is something like a 0.5 percent of 1% chance of the procedure causing the creation of a small clot, which then in turn could cause some additional problems, like a small stroke.

Ha!  

Remember that my GP even said "that's two!" when we met to discuss the stroke and embolization just a couple of weeks after the fact.  Two out of nine leaves seven...  and ratcheting up the counot of the number of lives used isn't going to be because of something so pedestrian as some glue that didn't take.

  Ha!!

The actual procedure is quite simple.  The They put a small cut in your femoral artery from a point in your groin and then slip in a small catheter or tube.  They use that catheter as guide  .They then thread a line in through this tube/catheter and up to your carotid artery, and into the vascular system in your brain.  They inject some 'contrast' or dye which the x-ray gear (I need to verify, but it looked like fluoroscope gear this time) can pick up and watch where it all goes.  And yes, when you stop and think about the simplicity of the statements being made, it is kind of scary.  The implication is that there is a direct connection from from your groin to your brain.  Not quite.  Your femoral artery tracks like all the major arteries and veins to, from and possibly through your heart.  Hmmm... interesting.  I'm going to dig out my copy of Gray's Anatomy and have a look at how all the plumbing works.
the image that follows is a teaser to get you to stand by and wait for me to write this up properly.  The image is one of the shots taken on February 3rd and was provided to me by Dr. Michael Chow, the gentleman who fixed the problem and must be credited for saving my life and my quality of life.  ;)

Angio of the 'pre-treatment state of my brain's vasculature.

I have removed the images until I can do a bit of an edit on them;  there is way too much personal information on the images, far more than I want out there in the great wide world..  sorry.  The images should be restored later today or early tomorrow.
This is one of the images with the offending personal data redacted;  this is the angio taken prior to the embolization while the fistual was still a problem. I have put it back in a slightly larger format so you can see the real detail in what was happening in my brain.  I may reduce the size to make it easier to view in the context of this blog.

Consider this posting a 'draft' version.  I will return to write a description of the procedure and the events of the day.  I will then post an update on the meeting with the surgeon who did the repair work that we were checking today.

Taking an active role in my recovery efforts. ;)

Instead of sitting back and waiting for the over booked and over worked rehab team at the Glenrose to have the cycles available to punch forward with certain elements of my recovery strategy, we've determined that it was time to step up and take a more active role.   Or more to the point, we've been prodded into taking an active role.  Okay, so what does that mean?  Well, the vision thing was causing me such distress that I decided to take myself off to an optometrist to have my eyes tested to see what's going on with the prescription lenses in my glasses.  The optometry  did assure me that the prescription should have been updated some time ago as a result of ageing, and not as a by-product of the stroke.  He also did confirm that I have a visual field deficit in the bottom left quadrant, and that it is important for me to wait to see the neuro opthomologist to get a full evaluation/assessment and to chart a course of action.  But it sure feels good to know that the eyeglass prescription has changed.  And I ordered new glasses yesterday.

the second element is as a direct result of prodding from a very good friend; we took out a membership in a gym today.  This is not as foolhardy as it seems on the surface.  The doctors have said that I can engage in some lowlevel exercise without compromising anything.  On Monday I have an angiogram scheduled to verify that the embolization repairs are holding.  I meet with the surgeon the day after.  While I've got his full attention I will get guidance and direction on what I can and cannot do from an exercise regime perspective.
One of the things that I would like to point out about the gym we joined is that they have said that if appropriate, they will liaise with the rehab team at the GlenRose hospital to work out an exercise program for me.  The area that I'm thinking might be fun to try to interface with is the balance work that could be done.

In any event, it just feels so good to be moving things forward.  I'm getting to be a happier patient here.  Does any of this sound familiar?  It is becoming very similar to the approach to my cancer treatment and recovery...  you gotta step up and participate in the management of your own recovery.

Kudos to the folks at the Glenrose who are working with me.  Glenrose Rehabilitation Hospital
The gym we joined is the Sturgeon Valley Athletic Club  Sturgeon Valley Athletic Club

We are moving forward, even though it seems to be taking forever…...

When taking your vehicle in for repair one normally 'shops the work around' by asking for a quote and an estimate of the time it will take from a couple of different garages, including the dealer where you bought the vehicle in the first place.  Vehicle mechanics work from an industry accepted and manufacturer approved guide to provide those estimates and those quotes.  I'm not really sure what your corner garage mechanic uses these days, but in the past it used to be 'The Michelin Guide'.  Not the travel and dining guide, but one that actually documented what it took to fix various things on various vehicles.  It would provide information on how long it should take and what parts were needed for just about any kind of vehicle maintenance for most brands and models. We never really question the mechanic about how long work is going to take other than to whine a bit, or give the 'heavy sigh', or to ask about 'loaners, and we rarely take them to task over the parts needed.  But 'stroke' isn't something we get to plan for and then shop it around to get the best price and recovery time estimates.

When we consider the concept of recovery we always tend to compare it to how others have managed their recovery.  Recovery then becomes a matter of 'formula', and when we try looking at ‘recovery’ from a formulaic point of view, as though there is a 'Michelin Guide' for the human body which is an important tool in the physician’s or therapist's tool kit.  Recovery from any sort of injury, illness or medical procedure does take time and the application of best practices and procedures for a successful recovery. Recovering from a stroke is no different.  Healing bones takes time; the medical profession knows how much time is rational.  Healing from various types of surgery also takes time and medical practitioners of all stripes know how much time is rational based on their experience and the 'best practices' of their disciplines.  So if you follow on with the same logical approach to Stroke rehabilitation, the assumption should be that there have been enough studies and general observation of the way stroke victims recover that the medical practitioners should know what is needed for appropriate recovery.  My challenge is that my recovery is not defined by pre-established and tested formulas because I am unique.  Alright, I will acknowledge that I’m sure that almost everyone considers themselves unique, and rightly so.  Okay, yes, I had a massive bleed on the brain like many unfortunate folks before me, and many who who will follow.  And okay, so yes there was a difference in that I had an embolization performed to stop the bleed and to prevent recurrence, which not everyone is fortunate to have had.  And unlike way too many folks who have a haemorrhagic stoke, I walked away, both literally and figuratively.  But seriously, it is now three months since the event and the surgical intervention and the only deficits I have are to do with a mild visual field issue, and some very minimal short term memory and attention deficit problems.  I still maintain that I had the short term memory and the attention deficit before the stroke.  Ask my wife; she may corroborate this. 
So at this point the rehab team have suggested that physically I have no major deficits and in fact, I no longer see the Physical Therapists because I am so high functioning to be essentially normal, or at least boringly average for a male of my age and background.  The Occupational Therapist and I continue to see each other, and quite honestly I am having quite a lot of fun with her.  Most of our work together is vision related with some fun attempts to quantify and qualify my ‘executive functioning’.  But I won’t get final sign off on some of the vision stuff until I have seen a Neuro Ophthalmologist, and I won’t be allowed back to work until I’ve had another neuro psyche evaluation.
The stuff that is most frustrating is in getting to see the neuro ophthalmologist which isn't scheduled until the end of March, and then the neuro psyche evaluation that will let me go back to work, and theoretically back my play to get my drivers’ license recertified.  Again, I believe that a big chunk of this is because of formula. The physician responsible for the neuro psyche eval and letting me get back to work doesn't seem to be comfortable with doing the eval until a minimum four months post stroke and maybe as long as six months post stroke.   Alright, I will acknowledge that not getting in to be assessed by the neuro ophthalmologist is an availability issue; there are not a lot of them in the neighbourhood.  But the neuro psyche eval looks like formula, given how high functioning I am.  Yes, I know that the rehab team is protecting me from being placed in a situation where I could ‘fail’ and compromise all their good work.  But, really, it just seems to moving so very slowly.  I so wish there were a way that I could get an interim assessment done.  I don’t think that’s gonna happen.  So we wait.
In the meantime I am attending therapy and counselling sessions and actually learning quite a bit, and, although I’m not sure I’m supposed to, I am enjoying most of the sessions.

This is all new to me.  I have to trust that the stroke rehabilitation specialists/therapists know all the best practices and procedures for stroke rehab and have taken my unique situation into account, and are looking out for my best interests.  This isn't necessarily something that I can 'hurry along'.

The next step here on this blog is to start a narrative about the actual sessions.  Well, ya, why not?  This could be fun.

Its not necessarily as bad as it seems; so just to add some clarity...

So I had occasion to send a note off to a friend just to put some things in perspective for him about how I’m doing and feeling.  Maybe it will fill any gaps for the rest of you as well until I can compose a proper note to each of you, or until I can draft the post that puts it all into perspective for you:

The note to my friend starts here>>

Good morning, dude!  I do have to laugh at the way that my wife and designated household communicator presents things.  Based on some of the communiques that have come out of the household you’d think that at some point I’d been reduced to the status of a stroked out zombie, complete with drool, new age shuffle and an inability to feed myself unless it was from a bowl on the floor.  None of this is now or ever has been true.  Nothing is as bleak as one could interpret from the communiques.  Probably the biggest deficits I have been wrestling with have been the balance issue, my challenges with vision plus the fact that I no longer type at 80 words a minute, but even that is coming back.  The darkest point remains that that I don’t get to go to work.    Everyone I complain to about this and the fact that the family has hidden my corporate BlackBerry invariably keeps trying to convince me to use the embargo on work as a way to relax.  HA!  I’m still trying to keep up with things at work and in my profession, and am treating this as a speed bump, not a full on detour or stop.  I am working at getting the doctors to lift the restrictions sooner than later… I figure that if I’m annoying enough they’ll agree to some sort of modified work arrangements just to shut me up.  😊

By the way, this photo was taken late one evening in July of 2013, a full 3+ months ahead of the actual stroke.  That droppy right eye was there then, and in a series of family photos taken in early June.  So don't be trying to read anything into it.  

the Short List Revisited... seven years on....

I doubt that any of the current readers, lurkers and trolls that stumble across this blog have actually read the 'short list' post that I put up in 2006.  This is not, nor was it ever intended to substitute for a 'bucket list'.  Here it is again, just 'because'  I'm thinking that I will begin to build the core of the current incarnation of the blog around it with homage to my cancer battle and my challenge with the stroke.  What do you think?


the 're-post' starts here>>

As I am drawn through the day-to-day meanderings that make up my world, I am encountering more and more youngish people on the verge of being thrown into the rough-and-tumble adult world... and I can't help but think that, for the most part, they just aren't properly prepared for it. Hell, I know I wasn't.. and I sure wish that someone had made a few suggestions at key moments when I might have listened.

These days I'm fighting with a number of different demons, not the least of which is self awareness.  I had always thought that I was 'aware', but the more time I spend on the business of living, I am discovering that I spent way too much of my time 'being cool' instead of being aware. And to be aware means to live, fully. Now I'm not suggesting that finding your cool, and being the you in the cool is a problem or a waste of time or energy, but what I am saying is that your cool can have a drive-by sort of relationship with the mainstream, not-quite-so-cool world that awaits you. And from those occasional oblique visitations with the mainstream world, you may find that your level of satisfaction increases, and, strangely enough, sustained happiness becomes a lot easier.

Its about doing yourself and those around you a favour.  Its the favour of Getting involved in living your life:  Stop standing outside watching it live you...

I doubt that anyone of the target group is listening now, but on the off chance that there is, here is a short list of some of the things I wish I had done in preparation to move into adulthood;

• learn to dance and then get out and do it
• learn to meditate
• learn to negotiate and mediate
• learn to manage time
• learn to manage friends
• learn to manage money
• discover the wisdom and understanding of  when to wear the uniform of the rowdy thrill seeking 'kid', and when and how to wear the uniform of responsibility
• learn how and when to shave
• I wish I had learned earlier when it was time to think about personal hygiene; when to begin using deodorant, when to begin showering daily, when/how often to wash my hair, face and hands
• learn how not to chew your fingernails
• learn when to spend on quality, and when to spend on throwaways
• how to buy good shoes and then how to maintain them
• buy a good bed
• learn to cook
• learn to tell a good bottle of wine from overpriced plonk, when to spend the money on good wine and when beer is not an appropriate choice
• develop a lifelong exercise regime
• learn yoga/tai chi
• learn to type
• learn how to set a table properly, with all the plates, cutlery and glasses and napkins
• learn how to use all of the cutlery and when
• get a motorcycle license, and learn to drive properly
• learn to swim
• learn the difference between intimacy and sex
• find a dentist who you can keep seeing for years, who will help you keep your teeth for your lifetime
• find a doctor who you can keep seeing for years, who can become a confidant and help keep you healthy

So that's the short list, without explanations. There is, of course the back story for each item on the list and of cours a longer list, and all of the stories and explanations that substantiate them. Those will come later as I grow bolder, and irrevocably older...

Disability Insurance

And while we wait for the 'all clear' that will allow me to take up my position at the assigned desk at the job that I actually like and enjoy, we've been told that the 'general sick leave' allowance will run out the first week of March.  So now we have to get the Long Term Disability Insurance activated.  I've reviewed the forms, passed the appropriate ones on to my GP and the Doctor managing my rehab...  this is getting interesting, and just a wee bit scary.

The disability insurance provider that is used by my place of work requires a number of different forms to be filled in so that they can properly adjudicate the claim.  The employer has a form which essentially (although I haven't seen it) describes the duties of the job one is no longer able to do.  The employee, meaning 'me' also has a form to fill out which seems to be an assessment of your understanding of your job, and whether you think you can perform it properly.   There is a third form which needs to come from your physicians.  Notice that I pluralized that.  They want to hear from your attending, and the key specialists.  This is especially important because it is going to be one or more of these good folks who have said you shouldn't be going back to work at the moment.
I am cautioned that the process for evaluation and adjudication can take up to six weeks.

We must remember that one of the primary goals of the insurance provider are to ensure that the insured person is not subjected to undue financial hardship during their disability period by providing an alternate source of income and then to help get the insured person back to work wherever possible.  It is my understanding that they may even entertain the notion of retraining...

The disability insurance that I have through my employer will provide 70% of the original salary.  It is also my understanding that my employer will continue to make pension contributions on my behalf and manage my other medical and life insurance benefits.

You do need to take this stuff seriously.  They will be asking your doctors some pretty heavy duty stuff.  And you do need to give the doctors permission to release the information.  Don't be silly about it; sign the release.  It could mean the difference between an accepted or rejected claim.