One Down, Two to Go

Ever since Ashley’s stroke 18 months ago, I have dreaded the day when medical insurance could potentially refuse to cover her outpatient therapies, either due to lack of progress or arbitrary cutoffs. In fact, during her inpatient rehab I was keenly aware that on any given day we could be abruptly discharged for the same reasons. That unnecessarily added to what was already enormously stressful.

In both instances, I pulled out all the stops to prolong that outcome, executing many things I had learned over Ashley’s lifetime. Due to the poor quality of the food during her inpatient rehab stay, I even prepared nutritious organic recipes for her that she could manage with her dysphagia.

During the weeks of home health therapy, and during the months of outpatient therapy, I worked with her throughout the day. I listened carefully to the therapists’ instructions and suggestions, replacing my mother’s inclination to save her with proper support and encouragement to create opportunities for her to improve.

Therapy is not 45 minutes X times a week. No, to truly benefit from therapy, it must be incorporated throughout the course of the day. Life’s daily activities become therapy: transfers to and from the toilet, transfers in and out of bed, transfers in and out of the car, repositioning, bathing, dressing, eating, baking, and playing games. It is a shift in mindset as all are performed with the purpose of rehabilitation.

We were wrapping up a therapy session on Thursday when the news finally came. Ashley’s PTA informed me that her Medicare recertification for physical therapy was upon us and he could no longer justify physical therapy. Because? “She is doing so well!”

Unexpectedly, I started to cry. It’s been eighteen months since her stroke and I can barely wrap my brain around what we have endured to reach this point in her recovery.

Ashley turned a monumental corner just 3 weeks ago when we offered her the use of a walker again. Months before, she was not ready and refused to try. This time she was more receptive. She struggled with her first few steps using it but has slowly gained confidence and taken off.

I must admit, it is hard to think of losing the support of her physical therapist who has walked this journey with us twice a week for the last 12 months. But fortunately, and unfortunately, we have worked ourselves out of his services. And now, with no formal education in any applicable fields, it once again falls to me. After all these years, I guess I should be used to that, but it still feels daunting.

Rest assured, had the hard cap for Medicare rehab therapy not been repealed in 2018, I fear we would not have had this same outcome. In fact, had Ashley’s PT and PTA not believed in her, and fought for her continued therapy (even within their own ranks), I doubt she would have come this far.

Instead, her PTA pronounced, “She’s back!”

He’s right and, unfortunately, he’s also wrong. From the standpoint of medical justification to treat, she is now using a walker with standby assist. And she has exceeded expectations when the stroke left her in a Hoyer lift 18 months ago.

But Ashley, as we knew her, is not back. Unfortunately, she never will be. She is now a different version of her former self.

And with or without formal physical therapy, “therapy” must continue, likely for the rest of her life.

From all appearances, her progress may appear “as predicted.” Oh, if you only knew. Nothing in life is a given, and no one receives a guarantee of anything, especially following a diagnosis of “stroke.” Therapy and hard work improve chances of recovery, but that may not even be enough.

But her progress is a testament to the tenacity of family, therapists, and most importantly Ashley. Failure would have been inevitable in the absence of perseverance. That is the one thing that, without a doubt, can be guaranteed.

Occupational and speech therapy will continue until Ashley’s skills exceed their services or her progress ceases. So, for now, it’s one down and two to go.

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