Katie Franklin – Fitness After Stroke September 5,  2017  9:28am EST

In the world of stroke recovery, my husband Morgan is what some call a repeat offender. Since his stroke in August 2014, which left him with left side arm, leg and hand weakness, he has pushed his body through three rounds of physical and occupational therapy, competed in a handful of adventure races where he has crashed over bicycle handle bars, completed a 5K road race in ratty old sneakers, and broken his collar bone. He loves extreme sports but for now they don’t love him back.

In the aftermath of Morgan’s stroke, we weren’t sure how great his adventurous tendencies would be impacted. We knew that he would need ongoing therapy and that it would take adaptive strategies to allow him to not only exert himself in the sports he gravitates to, but to ensure that he won’t cause more damage. What once came easy was now incredibly challenging. In addition to adjusting to overall stroke residuals, he also needed to adjust to the idea that he could no longer simply perform on a whim. He needed to re-train his body and mind to accept that he would need constant focus and work to maintain his active lifestyle.

We found his biggest challenge to be that he wasn’t working on the balance and strengthening exercises at home. By not doing this outside – and beyond – physical therapy sessions, his left side would significantly weaken. It wasn’t weakening to the point where he couldn’t function, but there was always a noticeable slack – elevated arm, leg drag, etc. To do something like ride his bike down a flat trail, he needed his entire left side to work properly. He repeatedly injured himself thanks to the poor balance and hard-to-manage left-hand grip.

Morgan finally faced the reality of the situation and agreed that if he didn’t find a way to regularly include workouts aimed at improving his left side and making his body stronger overall, he wouldn’t be able to continue with his adrenaline filled sports. During his third round of physical therapy this year, we came up with a plan together.

1. Joint Workouts - Three times a week we would do core and balance exercises together while watching our TV shows. This was encouragement for both of us and we easily worked it into our weekly routine. We also placed a greater emphasis on evening walks as a family. With a 4 ½ year old and a 9-month-old, this has become an important activity that we all look forward to.
2. Personal Training Trial – Pre-stroke, Morgan didn’t go to the gym. He just didn’t need to. He biked, hiked, camped, worked on his Jeep, welded, and did wood working projects – these activities kept him physically fit. Post-stroke, he tried the gym, which mostly resulted in him doing the same repeat exercises from physical therapy and he ultimately didn’t use it often. By committing to a personal training program, it’s similar to physical therapy in that he has designated training days each week, they are aware and familiar with the impacts of a stroke, and they continue to push his body in new and safe ways to improve his balance and strength.
3. Commit and Set Goals – He committed to this plan for 6 months and created the following goals:
   • Develop better strength and coordination that will improve his bike performance during his next adventure race (i.e. no flipping over handle bars)
   • Regain muscle mass to bring himself closer to his pre-stroke condition
   • Develop better control of his left side and control over separate left and right side motions
   • Improve endurance levels for cycling and adventure races

It’s difficult to accept when what you love no longer comes easy. Morgan’s commitment to staying on track with a workout routine was three years in the making. This is not to say that Morgan – who blessed me in the sharing of his experience – hasn’t been able to do physical things he enjoys. These activities have just been modified. The hope is that through a regular training program he can bridge the gap between pre- and post-stroke capabilities.

Here’s a comparison:

What makes a fitness plan and stroke recovery even more challenging, is the system itself. As in most aspects of our current health care system, there are wide gaps in patient care (in-hospital, at discharge and post-hospital). Many survivors and their caregivers struggle to know what the next steps are and then how to achieve those goals. We’ve heard from many in our stroke support group that there just isn’t enough information available. I have spent the past three years researching and connecting with stroke support programs in our home area of Washington, D.C., and still stumble across programs I never knew existed that we could have benefited from.

Here are some tips of how to get started researching what programs may be available to help in your own post-physical therapy rehabilitative fitness journey:

• Hospital Networks – Many hospitals have stroke coordinators on-site. This staffer likely visited you while you were in the hospital, sharing information about strokes, including what to expect, recovery goals, etc. The coordinator should have already given you a list of physical/speech/occupational therapists in your region, but ask in addition to this if they know of any programs for adaptive fitness that bridge the gap between when therapy ends and where high functioning recovery begins. 
• Ask Friends – If you have any friends who currently work in physical, occupation or speech therapy, ask if they are familiar with post-therapy programs. If they don’t know, someone within their network might.
•  Talk to Experts – Research and call every expert you can find that relates to stroke recovery and ask about resources for how to manage exercises at home and options outside of therapy. You should reach out to all of the following:
• Local chapter of American Heart Association and American Stroke Association, and any other organizations with an audience that includes patient rehabilitation.
• Physical therapy groups
• Sports medicine clinics
• Support groups
• Veteran rehabilitative hospitals (these hospitals tend to have cutting edge programs in rehabilitative fitness)
•  Adaptive Fitness Web Search – In this case, the internet may be your best friend. Search for “adaptive fitness,” “adaptive fitness stroke recovery” and other similar terms. Also, Stroke-Rehab.com has listed a variety of adaptive fitness facilities from across the United States. Visit the page here. In Washington, D.C. specifically, DPI Adaptive Fitness and the Stroke Comeback Center are phenomenal resources.

 The journey to stroke recovery is a long, twisted road. There are bumps and bruises along the way. As every stroke is different, I cannot say that you will regain what you lost. But I do know that with determination, support and adequate resources you can regain a level of physical fitness that allows you to live and enjoy life as you were meant to.

Learn more about stroke recovery at StrokeAssociation.org/recovery.