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…

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