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…

The timeline of a Stroke

I am assured that everyone is different, so here’s a draft and definitely incomplete narrative of the timeline that tracks my stroke and treatment to date;

Tuesday, November 5, 2013, 4:00 AM.  A severe headache woke me and got me out of bed.  My wife found me in the kitchen at 4:30 AM, clutching my head.  The pain was on the right side of my head.  My wife convinced me to take a couple of Tylenol and try to go back to sleep.  By the time I felt comfortable enough to get up, my darling was dressed on pretty much ready to begin her commute and her day.  I got up, got dressed, took my synthroid, made a cup of coffee then showered and dressed.  I left the hose just prior to 8:00 AM to head to work…It was at this point that I realized something wasn’t right….and I recall saying it out loud to myself as I tried to start the Jeep.  Things just didn’t feel ‘right’…On one level, it almost felt like I had had a drink or two.  I described it to myself, and then to the doctors later as ‘cognitive dissonance’.

Tuesday, November 5, 2013 10:30 AM ish.  After briefly chatting with staff members, I excused myself to go home to take a nap so that I could be fresh for a 1:00 PM meeting.  the headache was not abating, nor was the sense of disorientation.  I nearly walked into one of the client support team members.  So as I was leaving the building and walking to my Jeep, I decided that a quick trip to the Emergency department was more in order, than just going home for a nap.
The initial visit to Emergency was very unsatisfactory.  I got tucked into the back of a largish holding area, was hooked up to a heart monitor and left alone for over an hour.  I got cold.  I got hungry…  no one came when I pressed the call button…so I dressed, put on my very distinctive hat and long leather coat and walked past the nurses station which had three or four nurses hanging about, and left the emergency area without being challenged.
I went back to work, ate my packed lunch and acquitted myself reasonably well during the meeting.  Apparently I looked terrible, and my direct supervisor was mortified to discover that I had been at the hospital, but had come back to work.  She insisted that I go home immediately after the meeting…I didn’t.  I waited another couple of hours… I also talked with my wife who was equally upset that I had gone to the hospital and left.  I arrived home at about 5:00 PM; she immediately put me back into the Jeep and took me to Emergency.  Once in Emerg, we saw a doctor this time within 20 minutes.  I had a CT scan within half an hour of that…. and the doctor, Dr. Wong confirmed that the CT showed a bleed.  I was in a transfer ambulance within minutes headed to the University of Alberta Hospital Emergency room…  the CTs follow.

I've had to remove the CT scans because their labelling contains a bit too much personal information.  I am working on editting the images to remove the personal info and will re-post soon.  Hopefully later today or early tomorrow.

Thursday, November 6, 2013 an angiogram and angioplasty was performed to map the vascular structure and bleed in my brain.

Friday, November 8, 2013 what can only be described as brain surgery was performed to ensure the bleed was closed off and to do some preventative work to ensure it didn't happen again.  there seems to be some confusion on the date and what actually happened.  What they did was perform an arteriovenous fistula embolization.  Huh?  It means they squirted a type of glue into the compromised vascular structure and sealed the leaks.

I’ll post this incomplete narrative now…but I will come back and edit it and complete it in the next day or so.

Wednesday, Novmber 13, 2013... they let me go home...

December 2, 2013... first meeting and assessment with the Stroke Rehabilitation team at the Glenrose Hospital in Edmonton Alberta.

December 6, 2013.... meeting with Dr. Michael Chow, the neuro surgeon who worked his magic on the plumbing in my brain.

December 2013... referral to Dr. Michael Johnson, NeuroOpthomologist.  Still haven't heard a word...

Tuesday, January 7, 2014...  first full sessions with therapists at the Glenrose.