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.