Wednesday, October 23, 2013

Heading Back to Work.....

     So, I'm in the process of trying to get back to work and I thought someone might benefit if I chronicled my experiences of how that happens.  For a start, I have been living largely off social security disability(ssd) since the stroke and I was unable to return to my job, but we've really been feeling the financial pinch as things have been breaking around the house and requiring $ to get fixed, like the $500 we recently had to pay to have our furnace repaired with Winter bearing down on us.  So, I contacted a state agency called "Michigan Rehabilitation Services" which is dedicated to helping disabled individuals get back to work.  We've been looking at Accommodations that can be made to help me perform a job with my physical limitations, which for me is mainly needing a 1-handed keyboard as I work in I.T., but they're also looking at other ergonomic issues like desk height, proper chair accessories like arm-rests so my affected arm won't hang down all day and aggravate my shoulder to sublux. 
     Also, there is the issue of what happens to ssd benefits when I return to work.  I have only been "released" to work part-time and with my diminished capacities, I'm unlikely to be able to earn $ on a level  where I had been.  As far as ssd, the mrs agency has had me meet with an ssa expert on staff there.  What he told me was that I automatically have a 9-month trial work period during which I can earn any amount without affecting ssd benefits.  Beyond that, however, if I earn more than $1040 gross in a given month, ssa can determine that I am no longer disabled and discontinue my case.  It isn't the type of deal where they reduce your benefits like 50cents for every dollar you earn, etc.  It's all or none, which kind of stinks in my view.  There's surely no way I can provide for my family on that $1040 gross/month. 
     MRS has referred me to an employer in town which specializes in hiring disabled workers and helping them acclamate to working again.  With them, I have several meetings next month to check out what I can do there.  In addition, however, I recently interviewed for a part-time I.T. position at the local community college with a previous supervisor in my early I.T. days.  If I get offered this job, MRS will come in and do a workplace analysis to see what accommodations would be needed in their view to enable me to do the job, like a 1-handed keyboard, which is basically just a small usb keyboard about as big as a laptop keyboard.  I'll know about this job by next week, so I'm keping my fingers crossed(at least on my non-affected hand ;)

Tuesday, August 20, 2013

fatigue - your/my new worst enemy

Fatigue, in both physical and neuro form, is apparently quite common post-stroke.  In my case, it has been pervasive so far throughout my recovery.  Where it really hits the fan is when it disrupts my sleep pattern at night.  Specifically, what I fell into before and have been falling into again lately is a pattern of taking an afternoon nap and then, perhaps subsequently, struggling with insomnia in the early part of the night.  What seemed to help before was my doctor prescribing me a low-dosage neurostimulant (ritalin - yes, the stuff they give for adhd) which I would then take after lunch to help me get past that nap-hour.  I wouldn't really "feel" anything when taking it, but I was able to break the nap/insomnia pattern the first time, so it's something to consider if you need a way to break such a pattern.

In my experience, I think it's been hard to separate neurofatigue from physical fatigue.  My response to both is to want to nap, but I think that is counter-productive for fighting depression, yet another of the monkeys on our backs after a stroke.  I think napping in response to neurofatigue mainly serves to destroy our normal sleep patterns, as it isn't physical rest we need, but neural/brain rest.  I haven't settled on how to effectively do that yet, but it's a work-in-progress, so to speak.  I think the ritalin is to neurofatigue essentially what caffeine is to physical fatigue.

How-to of therapy

One of the most important lessons learned I think I can offer in all of this is how to approach therapy.  Not that I'm excelling at it - it's more of a lesson learned through the school of hard-knocks, so to speak.  When I was initially in therapy and at my first couple of therapy centers, I was operating more under the belief that therapy was what you did at therapy.....go figure.  In reality, I think a more accurate paradigm is to relate to your therapist as a coach or personal trainer, as where therapy needs to happen is in your home life.....hence the inevitable home exercise plan.  I'm admittedly poor at this, as I too easily let the rest of my life and/or fatigue crowd out home therapy.  Now, some 2.5 years later, I'm left to wonder if I might have been appreciably further on the road to recovery had I learned this lesson earlier on.  It's not a place any of us wants to be at, so the moral of this story is to consider therapy an integral part of your home life while your therapist visits are more for coaching

Monday, August 19, 2013

The early history...

     The stroke occurred on Jan 5th, 2011.  During the month of December 2010, I had been having what I characterized as transient episodes of numbness in my face.  About daily, I would have an episode whereby the left side of my face would numb over like a wave and my hearing in that ear would frequently seem a bit muffled during said episodes.  These would last about 30 seconds and then dissipate.  I actually had made an appt to go in and discuss it with my primary care doctor later the week of the stroke, but it was too late in retrospect.  Apparently, these were TIAs, or transient ischemic attacks - an early warning sign of stroke.  Had I gone in to the doctor earlier, it is conceivable that the stroke may have been avoided.  The actual day of the stroke, I was at work in my office in the morning and had another seeming-TIA.  This time, however, the episode did not pass and persisted for a couple of hours before I had HR call an ambulance.  Other than the facial numbness, the only symptom I had was losing my balance and falling out of my office chair.  Well, when I was taken to the hospital, they took me in the er and sent me for a ct scan, confirming that I had had a stroke. 
     Initially, they were uncertain as to what kind of stroke I had - either ischemic(a clot) or thrombotic(a bleeder).  I was presented with the option of having a "TPA", which is a clot-busting drug that can be given within a certain window of time, but with the caveat that they didn't yet know the type of stroke and if it was a bleeder stroke, it could make things significantly worse.  Well, with that caveat in mind and not being familiar with the real effects a stroke could have, I declined the TPA.  In retrospect, now that we know it was a clot, the tpa could have spared me some or all of the effects of the stroke (the paralysis, et al).  However, I didn't want to take the risk with a young family of things getting much worse.
     Over the course of that initial night, I lost function in my left arm, hand, leg, and foot and was eventually admitted to the hospital as a stroke patient.  Soon after this I was started in physical therapy and occupational therapy as an inpatient and also some speech therapy, although my speech wasn't especially affected by the stroke.  One high point in the hospital was that my assigned occupational therapist was none other than a lady by the name of Michelle Royer Jefferson, who was Miss USA 1987 and is now married to Lansing local Country music dj, Banana Don Jefferson of WITL.That was a treat in 'coolness', working with such a person of fame and a very nice lady :) Incidentally, the cause of the stroke was determined to be damage to the involved microscopic blood vessels by intense radiation therapy on the brain tumor I had when I was young.  The 'nails in the coffin', so to speak, were my blood pressure and cholesterol which were apparently elevated and not being controlled by meds.To this day, I am still taking bp and cholesterol meds to keep those risk factors under control and hopefully avoid a 2nd stroke.

Well, the moral I would take away from all this is that those warning signs like I described above should be attended to immediately.  The issue with the TPA was probably moot, given the risk of not knowing the type of stroke.  If anything, I would advise you not delay in seeking medical help in the event of a stroke, as there is a limited time window past the onset of stroke symptoms during which a tpa can be given.

Well that's all for now, but hopefully someone can benefit from my experience!


Since having a stroke just over 2.5 years ago, a common theme has been my wife wishing I would take notes of things, since my memory is far from perfect anymore(don't ask how perfect it used to be pre-stroke :), so I thought maybe I could use a blog to document my experiences in this post-stroke life and possibly trigger my memory for important lessons learned along the way.  Maybe something could inspire or encourage a fellow stroke survivor while I'm at it, which would be a bonus!
By way of introduction, I'm a 40 year-old stroke survivor from Jan 2011, husband and father to 4 rapidly growing children, lifelong Christian and childhood brain tumor survivor.  Being a 2x survivor, I believe God is keeping me around for a reason, despite my sometimes less-than-admirable efforts at recovery post-stroke - driven by both lack of focused effort and a lack of professional encouragement, as the therapy profession has been driven to be non-hope inspiring by its history of malpractice litigation.  In any case, my life is now in large part a story of trying to recover from a stroke amid the business and trials of having a young family.