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“You are not broken”: Larry’s journey to reclaiming his life and redefining possibility

Kate Ying | Aphasia, Brain health

[This blog post is part of our real-world stories series where Constant Therapy users or care partners share their personal stories and detail how Constant Therapy has helped them reclaim their lives after a stroke, brain injury, or after experiencing a neurological condition.]

Larry’s life took an unexpected turn when he began experiencing a set of alarming symptoms, including aphasia, fevers, and fatigue. Initially diagnosed with viral encephalitis, his condition quickly escalated, leading to an intensive care unit (ICU) stay. After enduring a challenging 21-day inpatient treatment and 10 days in acute inpatient rehab, Larry returned home physically weakened and still experiencing cognitive disorientation, but determined to embark on the path to recovery with his wife, Heather’s, unwavering support.

However, Larry’s journey took an additional twist when he was diagnosed with autoimmune encephalopathy shortly after arriving back home. The autoimmune disorder has prolonged inflammation in Larry’s brain, causing his symptoms to fluctuate and generally worsen over time. Amidst the unpredictability of a “one step forward, one step back” recovery, as Heather describes it, Larry and Heather remain steadfast in their dedication to finding solutions for continued progress.

During this challenging ordeal, Constant Therapy has emerged as an invaluable ally for Larry in his recovery journey. Initially, his inpatient speech therapist recommended the program to Larry and Heather as a way to continue progress outside of session. The immediate headway Larry made while practicing his exercises provided fuel for his recovery, allowing him to “relearn in real time,” according to Heather. Moreover, the customizable nature of Constant Therapy allowed for the difficulty level to be tailored according to the ups and downs of Larry’s symptoms, ensuring that it was appropriately challenging but not frustratingly difficult.

We had the chance to hear more from Heather, in her own words, about Larry’s story and experience with Constant Therapy.

From your perspective as Larry’s wife and care partner, how has Constant Therapy helped during his recovery?

Larry is an adult man who is every piece still “himself” and is glad to be able to apply himself toward productive work, and to practice, improve, and succeed. It is evident that Larry not only tolerates but gravitates toward Constant Therapy, and he likes the sense of accomplishment that it gives him. Moreover, the fact that the program gives some structure and independent work in the day is, for me, worth its weight in gold.

When I am able to observe some of Larry’s exercises, I can see immediately what the program is doing for him. I see it giving him appropriate feedback, guiding his recovery, and teaching him in every single moment. There are some moments when it is truly remarkable to see that the brain can reorganize itself on the fly!

When I observe Larry’s work, I can also see when the program resets its difficulty level for him if an exercise is too challenging. While sad and disappointing to see, that process in itself is still very valuable. At a recent doctor’s appointment, I was able to use Constant Therapy’s consistent reevaluation of the appropriate level, and the level reset, as an example of how Larry’s symptoms are continuing to wax and wane. It gives us a benchmark against which we can empirically judge “how is this going,” whereas in so many other cases we wonder “am I looking at it too closely?” or “is that just in my imagination?”

Though recovery is a lifelong journey, knowing that there is an aspect of time involved in the most productive window for neuroplasticity, it is an incredible comfort to know that even in this period where we are still seeking treatments and answers, Larry has this resource where he can do some work and make some progress toward rebuilding his life.

Have you noticed functional gains in Larry’s everyday life skills since using Constant Therapy?

One of the best advantages of using this program is that it’s given a measure of independent work for Larry. This, at least, is one task where not only can he succeed on his own without help, but he can also organize himself to get there, plan how much to do and when to stop, and modify his behavior when the program gives him that feedback.

Larry has struggled with concentration and the executive function skills that allow someone to simply plan their life. But with Constant Therapy (or “Speech Homework” or “exercises on the iPad,” as we call it), Larry has a piece of his independence back.

Furthermore, Larry’s concentration and attention to detail have been improving. Sometimes it’s almost as though the successes through the program affirm for Larry “yes, you can!” and “you are not broken, you do still have the skills of your former self.” It’s particularly great to see that those improvements in attention span have translated to other activities of Larry’s life, such as reading a novel or tidying up after a meal.

How often does Larry practice his Constant Therapy exercises?

Larry usually practices at least twice a day with the program. Smart, observant guy that he is, Larry quickly figured out that the program assigns a certain number of tasks for a given day’s therapy, so he’ll often strategize to split that up into two sessions. In addition, if the two sessions are complete, I encourage him to go back for a little “extra credit.”

In the morning, Larry is fresh and more successful, while in the afternoon he has more trouble organizing himself, so if therapy was already done for the day before noon, sometimes it’s a help to have that resource “to pass the time,” in a manner of speaking, in the afternoon. Plus, we know that practicing when he is not at his best also has its value.

How has Constant Therapy been an effective complement to other in-person healthcare services Larry receives?

Let’s be real: the healthcare system has not served Larry well in this recovery. First, the system seems satisfied to leave this 70-something man at a level that simply does not satisfy his adult humanity. (If he’s deemed “safe at home,” the healthcare system considers that good enough.) Second, the system assumes a level of availability (and expertise) from me as a caregiver.

Larry’s speech-language pathologist (SLP) from the in-home nursing agency was an incredible expert, and very compassionate and knowledgeable, but how much work could possibly be done in two 45-minute sessions each week? The final blow was when that in-home nursing agency announced that Larry did not meet their criteria for in-home care and he was summarily discharged. I’m not inclined to blame insurance companies, but in truth there is also a limit in our plan to the calendar-year number of total therapy visits. So, having Constant Therapy for between SLP sessions in the home has been incredibly valuable, not just for that structure that I’ve previously mentioned, but also just to keep doing the work that no one else was providing. Thank goodness he has this resource as a literal “constant” companion to do work and keep improving.

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