Severe brachial plexus injuries (BPI) are relatively rare, which can make it difficult for sufferers to find useful resources. Broken Plexus is a three-part micro-series on assistive design, centered on (but not limited to) people with serious BPIs facing long-haul recoveries.
The brachial plexus is a critical network of nerve pathways running between the spinal cord and the arm. But while my own brachial injury serves as a starting point, design lessons explored in these articles are applicable to a wider range of physical rehabilitation problems and processes as well.
Over the course of three articles, Broken Plexus will focus on long-haul recovery and cover (1) designing an organized physical therapy exercise workbook, (2) optimizing slings and braces, and (3) finding apparel that accommodates nerve damage, including motor impairment, numbness, and hypersensitivity. (See also: the six-part Single Handed mini-series, which explores adaptive designs for one-handed living.)
It all started in the wake of an encounter with the doctor overseeing my physical recovery process — after seeing my BPI rehabilitation workbook, he strongly encouraged me to share it with others. As a design journalist, I realized that I could do that and more – sharing both my own solution and the process of its design, the latter of which is generalizable to others engaged in long-term physical therapy. That design process helped generate a workbook as expected, but it also led me to streamline and improve my stretching and exercising routines.
Click Here for My Own BPI Workout Workbook [PDF]
Note: I’m not a doctor or medical expert of any kind. I’m just a writer who has suffered a severe brachial plexus injury (BPI) and wants to share design approaches and adaptations that have served me well in my own recovery, which will hopefully be helpful to others as well. -= 99pi’s Kurt Kohlstedt
Working Out the Design Problem at Hand
Everyone’s recovery is different, but there is a crucial area of overlap that may seem mundane at a glance: the proliferation of printed paper guidance. Each of my myriad rehabilitation specialists has had a helpful stretch, exercise, or some other activity to suggest. I wound up with printouts, handouts, worksheets, workbooks, and pamphlets from physical and occupational therapists, orthopedic surgeons, and other medical experts. Stacks of such sheets quickly got out of hand. Yet they couldn’t just be ignored – much of this material constituted stretches and exercises essential to my rehabilitation.
At first, I sorted this growing collection into a tabbed folder, then expanded into a three-ring binder so I could easily slot in more and more pages over time. But I was confounded by sheets with overlapping exercises, non-sequential stretches, partially redundant activities, and other problems arising from the variety of formats and sources. At the same time, I saw no obvious solution – at least not during the fast-paced months following my injury and diagnosis.
Many months passed, and eventually the pace at which I accumulated new exercises started to slow, reflecting a plateau in the progress of my physical recovery. The change of pace wasn’t entirely welcome, of course, but it did give me a chance to step back and assess my increasingly stable workout routine. Unsure of where else to start, I began to scan all of the (100+) pages I had gathered to date, with a general aim of making a more straightforward and usable exercise workbook.
Hindsight in hand, it felt like I had been given ever more pieces of an incomplete puzzle – except this puzzle wasn’t ever designed to be put together, and required intervention to determine its shape. I spent a lot of time regularly reorganizing my workout materials, and figuring out how the pieces fit as I went along, until a physical therapist finally went through it all (cover to cover) to help streamline things. A piece of advice, one patient to another: step back periodically and make sure a professional is looking at and reviewing the larger picture with you.
Paper Cuts (& Pastes) Address Pain Points
In the end, I boiled my various scans down into a small packet made up of just three primary (double-sided) pages of individual stretches and exercises — plus a fourth page, with assisted (active and passive) stretches on one side and a desensitization guide on the other.
Thankfully, my partner provided a lot of layout help and other technical assistance, using one of the various Adobe programs well-suited to the task of manipulating and organizing images and text.
Dezzignercise: A Five-Step Workbook Program
- First, we took the images, stripped them of color for clarity, and shrunk them down to fit about 8 to 12 per page (depending on complexity). Graphics are the most important elements, after all, visually conveying key positions and movements for each exercise.
- Second, we simplified the accompanying text, leaving only a brief title and minimal instructions necessary for clarifying anything not clearly communicated in the associated image. This helped to save space and eliminate unnecessary and distracting details.
- Third, we reorganized the exercises to optimize the overall sequence. Activities were grouped primarily by body position (e.g., standing, sitting, lying down, using a table, and so on). This would help the series work as a whole, but also enable subgroups to be tackled based on where one is and what one has at hand. Many hand stretches, for example, can be done anywhere and without tools.
- Fourth, we printed out a draft that I used to test the prescribed order, allowing me to tweak things within a group or rearrange groups to flow in a more optimal sequence. Some juxtapositions looked intuitive in theory, but worked poorly in practice.
- Fifth and finally, we used a professional service to print out a set of nicer, more durable finished workbook versions with laminated pages strung together with spiral bindings. I’m sure they’ll need an update or insert at some point, but for now they work marvelously.
Pro tip:
Pay attention to your print setup so that the correct pages face one another. The image below shows how the first two hand exercise pages should form a spread in my workbook. A simple one-page change can shift every page off by one and mess up the whole layout. You can start by toggling “show cover page” on or off in your PDF viewer. But you may need to add a blank white page after the cover for printing purposes. This is well worth sorting out before a pricy final print!
Laying Out a One-Handed Option (Absent a Program)
Before I was offered assistance, I had a low-tech plan, which you are welcome to follow if you’re not able to take the higher-tech path. I was going to print out abbreviated text, cut out illustrations with left-handed scissors, then set my inner child loose with a glue stick and sheets of paper. I would stack the results and have a shop scan, print, and bind copies. There are a few obvious downsides, but I can only see one difference that would suggest a change to the order of operation above. Since this cut-and-paste approach locks down page layouts early, I would suggest as much testing as possible before making the first cut.
Tangible Benefits May Include & Exceed Expectations
With my streamlined workbook, I find it substantially easier to get myself started each day. Also, I can run through my workout routine all at one or in parts (that correspond to pages) more easily and efficiently.
One dimension I’ve found especially useful is the organization of individual and facing pages. I can open up to a spread and engage in a series of activities based on factors like whether I’m at home, sitting on a couch or at a table, and so on. I credit the iterative design process with this utility — going through and testing drafts led to more and more organized subsections of the whole.
Gravity Elimination & the Importance of Individualization
With severe brachial plexus injuries, some exercises will need to be done with minimal interference from gravity, at least at the outset. So-called “gravity-eliminated” exercises can help build strength in weak muscles by minimizing gravity’s resistance. If you can’t lift your forearm vertically (against gravity) while it rests on a table, for example, you can orient yourself sideways, lying on the floor and “lifting” it horizontally instead. Weights can be added incrementally in either orientation to help as well.
Gravity-eliminated alternatives can help you gradually build strength until you get back to lifting in a more conventional fashion. The idea is to add weight while horizontal, building up to a rough target, before shifting to perform the action in “anti-gravity” mode. The target weight corresponds to what you’re aiming to lift — if you want to lift your 8-pound forearm upward, for example, that’s your horizontal target.
This relative flexibility of direction may seem counterintuitive, so to bring the point home: some exercises in my workbook are ones that were literally turned on their side by the Physical Therapist who reviewed my workouts. In a few cases, she simply had no illustration on hand of a goal exercise, so she rotated upright versions by 90 degrees instead, then sketched over them in various ways to clarify things as needed.
I’ve gone into detail specifically on gravity elimination in part because of how especially helpful this subset of exercises has been to my recovery, but also to highlight the different ways any given individual may have to work out at any given stage. Some things you may be able to do in a conventional orientation from the start — others you may have to start horizontally and work your way up. Similarly, the exercise tools I’ve acquired along the way have changed with my capabilities, such as my ability to physically grasp a workout wand.
Workout Tools: Accessorizing to Exercise
Much of my regular workout requires no particular tools aside from a place to stand, sit, or lie down – but some supplementary objects have been essential, too. Most of these are mercifully small by design, and thus easy to store, but in some cases I’ve had to seek out more compact options.
So, between professional recommendations and my own independent finds, I’ve accumulated a collection of things that help enable various exercises and stretches. The following are some of the items I’ve found particularly helpful along the way, including variant designs of common tools that I discovered after searching to solve a particular problem. Of course, not all of these apply to your recovery stage or situation:
- A collapsible yoga stick that serves as a modular rehabilitation wand. I’ve even traveled with it abroad (but checked it in a bag).
- An arm skateboard for doing those all-important gravity-eliminated exercises. Note: a board is handy but not strictly necessary – a low-friction cloth that slides easily over surfaces can serve instead.
- Wrist weights and weighted gloves to help compensate for severe hand impairments, such as an inability to wrap around and grip conventionally shaped (e.g. cylindrical) weights.
- Soft dumbbells of varying weights with adjustable grips that can wrap a hand or wrist. Bonus: these also slide easily along hardwood floor surfaces with reduced fiction and less risk of scratch damage.
- Adjustable ankle weights to further fine-tune increments. Bonus: these can also be slid onto a wand for lifting exercises as needed.
- Grip training sponges for hand strengthening with different color-coded levels of resistance. Pro tip: don’t give up, even if you find yourself stuck on yellow for a long time (like I did!).
- Resistance training bands for finger strengthening — color-coded or shaded and starred to indicate relative resistance. Note: these may be hard or impossible to use early on depending on injury severity.
Never Underestimate a Handy Paperweight
It’s a surreal experience … to suddenly and completely lose contact with your entire shoulder, arm, and hand, then wait and watch as muscles atrophy and things somehow get even worse. I joked for a while that my hand was only useful as a paperweight … that I had to pick up and place with my other hand. But don’t underestimate (literally) having a weight on hand to hold something in place for your working hand (such as a piece of paper you’re trying to write on left-handed).
Over time, with a lot of rehabilitation and patience, things slowly stopped getting worse and even began to turn around. It may sound like a painstaking process, but when your baseline is complete immobility, anything else is an improvement. As one of my BPI specialists at the Mayo Clinic once told me, albeit likely based more on my apparent mood than my recovery progress: “it’s not as bad as you think.”
In hindsight, I think he was right — and I sincerely hope that if you’ve suffered a similar injury, the same proves true for you. I’ve also found physical therapy to be frustrating, taxing, and outright painful at times, but with tangible rewards well worth the work. So for reference (and good measure), below is a final link to my long-haul recovery workbook. Ideally, your own design will help you not only organize routines but also clear mental hurdles to physically engaging in therapy, too.
My Complete BPI Workbook as a Ready-to-Print PDF
Coming Up on Broken Plexus
From off-the-shelf slings to custom arm braces, medical orthoses can often be hacked and modified to improve comfort and even functionality. Then, speaking of good fits: we’ll consider assistive apparel in light of peripheral nerve damage, which can cause everything from numbness to hypersensitivity, and make it hard to find wearable and bearable materials and clothes.
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