Retreat & Refresh Stroke Camp
a division of United Stroke Alliance www.unitedstrokealliance.org
http://www.strokenet.info
By David Wasielewski
Just Do It!!
Stroke survivors are all familiar with the notion that every stroke is different, every survivor is different and so recovery means different things to each individual. An important follow-up to these notions is that each survivor and their caretakers need to actively participate in their individual recovery. Each survivor will experience any number of physical and/or mental deficits and be approached by any number of healthcare professionals about treatments and therapies that can enable recovery.
Trying to address every deficit at once can be difficult if not impossible for the new survivor. The stress of doing so can be overwhelming and may even result in more damage. In ideal circumstances a team of healthcare professionals, including doctors and therapists, will help the patient determine a sensible approach to rehabilitation. A good team will begin by assessing the deficits and determining, with the survivor and caregivers, what the survivor’s priorities are. Of course, issues like eating and swallowing will be priorities for everyone.
But once those are addressed other priorities should be managed by the survivor and caregiver. They should become active in the recovery process. Asking questions is the best way to start to understand why certain therapies are added to the routine. These questions will help the survivor to better manage their expectations. When will my hand begin to move again? How long might it take till I can walk again? The answers will likely be uncertain but those discussions will help the survivor manage the recovery process.
Understanding how the body and brain heals itself will provide insight into one’s adventures through therapy. Typically, recovery is not overnight and requires setting of long term goals. Managing of recovery and becoming comfortable with your new situation becomes even more important after your immediate recovery team is disbanded. You are sent home or to another new facility to continue with recovery. The patient and caregiver need to balance their expectations and progress over time.
A growing list of medications to manage spasticity, high blood pressure and other issue needs to be balanced against the side effects and their effect on one’s quality of life. My experience was leaving the hospital with a list of meds that addressed the doctor’s concerns but had a seriously negative effect on my quality of life. That same regimen of meds led to a profound disruption of sleep and ongoing fatigue that left me unable to function during the day.
My response was to address these concerns with my doctor and work with him, balancing the meds and their side effects while maintaining a quality of life that I found acceptable. Over a few visits we reduced the number and dosage of meds eliminating many of the fatigue and sleep issues. Over the years my doctors realized my resistance to simply adding additional meds to my existing regimen. I have taken on an active role in management of my recovery and quality of life as I deal with the remaining deficits.
My doctor and I discuss changes carefully before new meds are added or additional therapies are scheduled. We often arrive at a point where I agree to try the meds but the decision as to their effectiveness, and whether to continue with them is left to me. It is easy to simply follow the doctor’s advice and directions but survivors must be careful when they leave those decisions completely up to the doctor. Good doctors will encourage this participation, but it is up to the survivor to ensure that this happens.
We each hopefully arrive at a point where we need can successfully adjust to a new life where we can balance our new capabilities with an acceptable quality of life. To do that we need to actively participate all along the way.
David had a stroke in 2005 ending his career as a logistics consultant. Since the stroke he returned to college for a Sociology degree. He is a peer counselor, facilitates a local stroke support group, volunteers at the local United Way and writes for The Stroke Network.
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Copyright ©February 2017
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