Transitions - Rebuilding a whole post stroke person

By David Wasielewski

I’ve written before about the challenges involved in stroke recovery. There are of course those that relate to the physical deficits of stroke, ranging from minor losses in function or feeling to major deficits of hemiplegia, severe aphasia etc. There are many strategies for overcoming and adjusting to these issues. Therapy techniques evolve and new technologies like robot assistance and biofeedback mechanisms come available almost every time we pick up a magazine or research journal.

Less discussed are the strategies and resources that one needs to help recover from social and psychological losses that result from stroke. One profound loss for those affected is the social environment that the survivor existed in prior to the stroke. For relatively young survivors like me (48 at the time) a social life consists of work associates, sports teams, family and friends. These relationships depend not only on compatible personalities but also build on shared experiences. Friendships, associations and family relations are built on shared experiences: competing on a team, traveling together, etc.

In many cases these activities supplement other relationships. Co-workers meet at happy hour, attend sports events or shows. Not being able to participate in these other common activities affects the survivor’s ability to become a full member of their social circle. It significantly limits many normal social opportunities.

As a relatively young survivor with significant physical deficits I find my range of activities limited. I had to retire from a long career, and could no longer participate in sports that I enjoyed. I did find opportunities to participate in other activities. I returned to traditional school as well as attend adult educational seminars designed for retired seniors as well as participate in various social groups whenever possible. These are enjoyable but often not in synch with my attitude and mental state.

I was recently unable to participate in an interesting field trip for a class I took at my local community college due to my physical limitations. I typically find that I am the oldest student in my traditional classes. I am often the youngest member in the adult / senior seminars I attend. My physical abilities might be in sync with those of the seniors but my mindset is often quite different. While the intellectual challenges of school are rewarding acclimating to the mindset of those significantly older or younger than myself presents a challenge.

My physical limitations may not allow me to participate fully with the younger folks while I don’t have the mindset or the patience to appreciate much of what the older folks are experiencing. This frustration often leaves me in a place where I am simply in a room full of people that I know rather than a group who I might otherwise consider close friends. My intellectual curiosity is satisfied but there is a tendency to be left out of other, important social experiences.

I do participate in and often lead activities for my local stroke support group and consider many of these folks among my good friends, but arranging activities with this diverse group, most new to their disabilities, is another challenge. Most of these folks are learning to live with their own disabilities while also trying to figure out the often hidden social challenges that come with life after a stroke. Dealing with my own disability, while helping others is a unique experience in itself. The opportunity to simply relax and have fun is not as easy to achieve as it was before the stroke. Everything takes more effort now.

The point here is not to simply recognize that these challenges exist but rather to understand that the social part of recovery is as important as the physical. Survivors and caregivers need to be aware of these less obvious aspects of recovery and be sure that these often hidden needs are addressed. Sadness and depression in survivors is as much about dealing with physical loses as the social losses described here. Assisting the survivor build a meaningful social life will go a long way towards helping them successfully navigate their post stroke world.

Copyright July 2012

The Stroke Network, Inc.

P.O. Box 492 Abingdon, Maryland 21009

All rights reserved.