In February it will be four years since Alex’s stroke and 6 years since the ordeal began. As we move into the holiday season, Marc and I find ourselves reflecting on the entire process and discussing what helped our story to be one of inspiration – our Stroke of Luck so to speak. We started compiling a list of what we learned and how we applied those lessons with positive results. Our plan is to share our list with you in parts so that you can make sense of it in “bite-size” pieces. We welcome comments, suggestions, and questions. We hope that you will pass it along to others who might be helped.
Here is our first installment:
1. The Myth of One Year – Over and over again we heard that we could expect most of Alex’s recovery to occur during the first 6 months and almost all of her recovery to occur within the first year following her stroke. This caused us to panic as the months ticked away. Fortunately, we did not let up on our efforts. Alex continues to improve and “recover.” During this fourth year of recovery, we have seen impressive improvements both mentally and physically. Alex’s reading fluency and comprehension have improved – she is now able to read to learn rather than just learn to read. She is writing faster and better. And her speech is much more fluid with improved vocabulary. Her physical improvements include a better gait when walking. She can even “run” for short distances on the tennis court. We are most excited to report that she is just now beginning to use her right hand for some daily living tasks. The message here is that you cannot give up. Do not place a time limit on your rehabilitation efforts. Rehabilitation centers will release the patient from therapy. This does not mean that you as the caregiver can stop working for more recovery on your own – even after several years.
2. It Takes a Village – Finding the right rehabilitation center is crucial to starting you on the path to success in supporting rehabilitation. We interviewed and visited several facilities before making a decision. What we found crucially helpful was that we, as the caregivers, were comfortable asking questions so that we understood the motivation behind and technique for each exercise. We functioned as active participants during therapy – this allowed for better transitions to therapy in the home environment in between therapies. We used this information to replicate the experiences with Alex when the therapists were not present. This provided consistency in Alex’s care and rehabilitation. We did this while staying with Alex in the rehab hospital but also when she was an outpatient for rehabilitation. Our goal was always to take the therapy home with us so that we were supporting Alex’s recovery 24/7. This meant that when we were unable to take Alex to therapy, her grandparents took her, and eventually other caregivers. However, regardless of who was with Alex, they took notes and asked questions during therapy rather than sitting on the sidelines or in the waiting room. They would then report to us so that we could continue the same level of care at home. They became part of her village.