Supporting Clients With Progressive Disorders: Goal Setting, Treatment, Adaptations, Future Considerations

Editor's note: This text-based course is a transcript of the webinar, Supporting Clients With Progressive Disorders: Goal Setting, Treatment, Adaptations, Future Considerations, presented by Amber L. Ward, MS, OTR/L, BCPR, ATP/SMS, FAOTA.

*Please also use the handout with this text course to supplement the material.

Learning Outcomes

After the course, participants will be able to: 

• Evaluate 3 therapy goals appropriate to a client with a progressive disorder.
• Evaluate a treatment plan for a client with a progressive disorder based on current and future needs.
• Evaluate occupational adaptations for longer-term solutions and needs.

Introduction

I am glad you are with us today as we transition into the fourth session of this series. Previously, I covered the clinical specifics of ALS, multiple sclerosis, and muscular dystrophies, so today we are focusing on the clinical application. We are addressing what we actually do with these individuals, how we navigate insurance billing to ensure they receive the necessary care, and how we establish goals and manage treatments that account for both their current status and their future needs.

My goal is for us to be able to evaluate three therapy goals appropriate for a client with a progressive disorder and to develop a treatment plan that addresses immediate and long-term requirements. We will also evaluate adaptations that offer sustainable solutions. Throughout this discussion, I want to move beyond basic tools like button hooks and sock aids to explore more unique and specialized interventions. I look forward to diving into these challenges with you.

What to Expect With Progressive Disorders 

When we consider progressive disorders, we expect a decline in functional performance. In my twenty-two and a half years of practice, I have not had a patient in the classic sense get better. People often ask how I can possibly work with this population, but I find that they say the same thing regardless of the population, because life is difficult and things happen. It has been an amazing journey to meet people where they are and look toward the future to make life as amazing, comfortable, and high-quality as possible.

The overarching message for our work is to think and plan ahead. Individuals with these diseases are often unable to work and may face very limited income, requiring them to plan for the future while considering finances today and beyond. We must also consider what that progression looks like. Many clients will experience inconsistent abilities during the day, week, or month, depending on exacerbations, fatigue levels, and overall energy and endurance. There may also be cognitive changes to manage.

The impact of these conditions extends far beyond the client. It affects the family and the roles, habits, and routines of everyone involved. Occupational engagement impacts the entire circle around the individual. Most of these progressive diseases have limited medical interventions. While some treatments, such as those for myasthenia gravis, can occasionally halt or slightly reverse symptoms in some people, we usually aim to slow the pace of change. None of these diseases has a cure, which is a difficult reality. However, this makes occupational therapy incredibly valuable because we help individuals maximize their remaining abilities.

In addition to physical, cognitive, behavioral, and sensory issues, there are significant psychological and psychosocial challenges as people come to terms with a terminal diagnosis. Clients often experience anxiety, depression, anger, and all stages of grief.

I want to draw your attention to a specific client who has lived with ALS for a long time. She uses an eye gaze wheelchair control system. On her tablet screen, grayed-out arrows provide directional choices, while a camera shows what is obstructing her field of vision, so she can look at specific squares to move her chair. Having technology like this is life-changing. It keeps people active, out of bed, and moving. This level of technology was not available in the past, and it is exciting to see the tools we now have at our disposal. I will now provide a quick overview of three specific types of disorders as a review.

Progressive Disorders- ALS

In discussing amyotrophic lateral sclerosis, which is often known as Lou Gehrig’s disease in this country, it is important to remember that much of the rest of the world refers to it as motor neuron disease. This title is logical because the condition affects voluntary muscles within our control. There are no sensory symptoms associated with ALS, though an older client may certainly present with a multitude of other age-related issues. To be diagnosed with ALS, a person must show both upper motor neuron and lower motor neuron signs. Upper motor neuron involvement typically presents as spasticity, increased reflexes, and tightness, whereas lower motor neuron involvement manifests as atrophy, weakness, and decreased reflexes. A client might present with a slightly weak hand, spasticity in the foot, or decreased flexion in one shoulder with increased reflexes in the tongue. These signs can appear anywhere and can be quite scattered throughout the body.

There are several variants under the ALS umbrella that we should keep in mind. Primary lateral sclerosis, or PLS, is the spasticity version that progresses much more slowly than classic ALS. Progressive muscular atrophy (PMA) involves the lower motor neuron component of the diagnosis and has a longer progression. While classic ALS might be upper or lower motor neuron predominant, most individuals eventually end up in the same place, characterized by weakness, atrophy, and decreased reflexes. This happens because the ability to maintain spasticity fades as the motor neurons sustain more damage. We also see progressive bulbar palsy, or PBP. The term bulbar refers to speech, swallowing, and breathing. For those with PBP, the disease only impacts these functions and does not progress to the rest of the body, though one can also have bulbar predominant ALS.

ALS can progress in any direction, whether that is distal to proximal, from one side of the body to the other, or diagonally. It might move proximal to distal on one limb and distal to proximal on another. You could see a combination of neck weakness, dysarthria, and foot drop. Because of this variety, if you saw a group of these clients in a waiting room, they might look like they have a number of different diseases. However, the hallmark remains the involvement of voluntary muscles without any sensory issues.

Progressive Disorders- MS

I want to provide a reminder regarding multiple sclerosis and emphasize how incredibly variable this condition can be. As an autoimmune disorder, its impact varies wildly; some individuals may face significant disability within six months to a year, while others may live for thirty or forty years with very limited disability. In some cases, you might not even be able to tell that anything is happening. This level of variance presents a particular challenge for us as clinicians. The damage manifests as lesions or plaques in which myelin, which covers the axon and allows cells to function properly, is compromised. This damage can occur in the brain, spinal cord, or optic nerve and is generally visible on MRIs or otherwise identified clinically.

There are a few main types of this disease. Relapsing remitting multiple sclerosis, or RRMS, affects about eighty-five percent of the population. These individuals experience a downturn but can usually work their way back up to a level close to or at where they were before the relapse. These relapses can be triggered by many factors, including heat, stress, fatigue, or the flu. Eventually, most people with the relapsing remitting type will transition into secondary progressive multiple sclerosis, or SPMS. Most pharmacological interventions aim to delay this transition. While RRMS involves a pattern of ups and downs, secondary progressive MS is characterized by a downward course that tends not to have remissions. Our goal, of course, is to keep people in remission and improvement for as long as possible.

The third major version is primary progressive multiple sclerosis. This involves a continuous slope of change and progression from the very beginning, with no real periods of remission. You may occasionally see outliers, such as lesions on an MRI without accompanying symptoms, or symptoms occurring without visible lesions. While a small number of people have a direct genetic link, it is believed that a larger group carries a genetic vulnerability to developing the disease. 

Progressive Disorders- MD

When we look at the variety of muscular dystrophies, there are over forty diseases under the Muscular Dystrophy Association umbrella. Interestingly, only nine of those are actually classified as muscular dystrophies. I want to discuss a few of the primary ones we encounter.

Duchenne muscular dystrophy is typically diagnosed in boys around age three. These children generally require power wheelchairs much earlier than others, classically between the ages of eight and twelve, though new pharmacological interventions are beginning to change that timeline. This condition affects voluntary and cardiac muscles, often leading to an enlarged heart, contractures, and weakness. For many of these boys, cognitive, behavioral, and attention issues such as OCD or learning disabilities can also be part of the disorder.

Becker muscular dystrophy exists on the same continuum as Duchenne. Both involve a protein called dystrophin, though Becker affects fewer cells. Diagnosis for Becker typically occurs in the teens or early adulthood. It affects voluntary muscles and is much slower to progress than Duchenne. While these individuals generally do not experience cognitive or behavioral challenges, they can still face cardiac issues.

Myotonic muscular dystrophy has two main types. Type one is generally more severe, with an earlier onset and quicker progression. Both types involve weakness that moves distal to proximal, meaning hand and foot weakness appear first. These clients often require AFOs and struggle with fine-motor tasks such as writing or buttoning. Both types can also involve cardiac issues, while cataracts and diabetes are actually quite common. Type one may include cognitive deficits, which we typically do not see in type two. You might also notice specific genetic characteristics such as long faces, facial weakness, or high foreheads.

Limb girdle muscular dystrophy, as the name suggests, impacts the shoulder and hip girdles before progressing to the limbs. Because this is a proximal onset, clients first have trouble reaching due to shoulder weakness and experience significant difficulty moving from sitting to standing. As it progresses, walking and functional tasks become harder. These individuals, much like those with Duchenne and Becker, often develop significant lordosis or swayback. Their knees may hyperextend, and they often adopt a waddling gait as they attempt to balance with weakened hip extensors.

Fascioscapulohumeral dystrophy, or FSHD, affects the face, scapula, and humerus, meaning the face, shoulders, and arms are impacted first, along with the hips. Some individuals with FSHD experience significant facial weakness, making it difficult to smile or move the mouth. This often leads to dysarthria and difficulties with chewing and swallowing. These clients usually do not require a wheelchair as early as those with limb girdle dystrophy, since they do not always have the same immediate hip weakness issues affecting mobility.

The last condition I want to mention is Charcot-Marie-Tooth, which is actually a peripheral nerve disorder rather than a muscular dystrophy. It is quite common, with over 30 variants ranging from a type that affects infants to one in which symptoms first appear at age 60. Because it is a peripheral nerve disorder, it typically starts in the hands and feet with neuropathy symptoms like numbness, pain, and weakness. Depending on the onset and severity, you might see a claw hand presentation or very high arches in the feet, which sometimes require surgery. Most people with Charcot-Marie-Tooth use AFOs. Due to the combination of numbness and pain, they often struggle with vocational tasks like typing, writing, packaging, or opening containers.

General Role of OT

The overarching role of occupational therapy for individuals living with these progressive conditions is to assist in comprehensive symptom management. We address pain, mitigate the risk of contractures, and provide essential support through orthoses or cervical collars. When a client experiences falls or cognitive challenges, we address these by implementing strategies to support memory and executive functioning. Our primary objective is to maintain functional independence for as long as possible by introducing adaptations that help people perform their daily activities and optimize their quality of life.

While our work is rarely rehabilitative in the traditional sense, it focuses heavily on compensation and adaptation. We prioritize a strengths-based approach, identifying the specific movements or abilities a client retains and harnessing those to maintain function. For example, if a client has a specific range of hand motion, I will look for a wheelchair joystick that matches that movement pattern, ensuring it is consistent and not overly fatiguing.

A critical component of our intervention is the prevention of secondary complications that arise not from the disease itself, but as a byproduct of the primary symptoms. This includes managing pain and preventing pressure injuries that can occur from prolonged sitting. We also work to prevent contractures that may develop due to a lack of weight-bearing, decreased mobility, or reduced range of motion. By proactively addressing these secondary issues, we help our clients maintain comfort and dignity throughout the progression of their illness.

When would OT be needed?

Our role involves addressing the progressions and changes that inevitably come. In a multidisciplinary clinic where we collaborate with physical therapy, speech, nutrition, and social work, we may see clients on a regular schedule. However, in home health, outpatient, or rehabilitation settings, our involvement might be episodic. In those cases, we often see clients for a set period following a specific progression or change that has impacted their daily life. This work is fundamentally about problem-solving through occupations and daily tasks. I always begin by assessing what has changed since I last saw the client, whether that was six months or a year ago, and identifying the current obstacles.

Safety is frequently a primary concern. For a client with multiple sclerosis, this might involve managing memory or cognitive deficits. For those with ALS, while memory often remains intact, we might encounter challenges with language, word finding, spelling, apathy, or even paranoia. When you add in the cognitive and behavioral issues seen in certain muscular dystrophies, safety becomes a multifaceted issue involving balance, fall prevention, and executive functioning.

When new weakness emerges, such as foot drop or weakness in the dominant thumb, it affects everything. It changes how a person twists a knob, opens a package, or writes. I also see a high rate of shoulder instability in this population, which can lead to frozen shoulder, significant pain, and stiffness, particularly when the individual is stationary for long periods.

Environmental barriers also play a huge role in our interventions. If a home is not accessible due to stairs, tight doorways, or clutter, it severely limits mobility and requires intensive problem-solving. We apply adaptive equipment and specialized techniques to navigate these environments, which is often our main focus. This is supported by extensive education. I provide education for the immediate need, such as choosing a tub bench over a shower seat, but I also educate for the future. I make sure my clients know when to reach out to me again for a different set of problems and provide them with long-term strategies to stay safe as their condition evolves.

Factors for OT to Consider

In our practice, personal factors can range from a client being difficult or even combative to someone who remains remarkably comfortable despite their physical limitations. As outlined in the Occupational Therapy Practice Framework, we must examine how personal, environmental, and occupational factors interact to create the specific challenges our clients face. It is often quite easy to focus solely on physical symptoms because they are visible, but we must also understand the deep emotional impact of losing a role and recognize that activity demands may be much greater than we initially imagined.

If a person is home alone and cannot open their door, that becomes a critical barrier. It is also common to encounter situations where you recommend essential items that a client simply cannot afford. In those moments, our professional responsibility goes beyond just making the recommendation. We must take the extra step to call around to loaner closets or search for accessible resources through community listings to find what they need. All of these elements tie together to dictate a person's quality of life and functional independence.

I recall a client using a Kinova Jaco robotic arm, which is a sophisticated piece of technology that attaches directly to a wheelchair. While it is designed for complex tasks, I adored the fact that my client used it simply to scratch his head. To me, that is the perfect example of using high-level technology to meet a very personal, functional need.

Occupational Engagement

Whenever we discuss occupational engagement, we are addressing a balance of what is necessary and what is desired. This extends beyond roles, habits, and routines to include the heavy weight of responsibilities such as childcare, work, and driving. A central part of our role is helping clients determine what is truly worth their limited energy. Nearly every progressive disorder is accompanied by profound fatigue and significant difficulty if a person pushes themselves too hard. This forces individuals to make difficult choices every single day.

Clients with multiple sclerosis, in particular, must wake up each day and strategically plan their energy expenditure because they simply cannot do everything. For individuals who are accustomed to being highly active and doing whatever they please, this transition is particularly taxing. As we move forward, we will examine each of these disorders individually to discuss the specific occupational therapy focus and the specialized interventions required for each.

ALS: OT Management

I cannot tell you how many times a plan of care has arrived at our center for a client with ALS where the therapist has set a goal for five out of five strength in the upper body. When a client can barely get their hand to the top of their head, it is infuriating to see goals that suggest they can strengthen in classic ways. We are setting people up for failure, and it shows a lack of communication regarding what the client actually wants. Occupational therapists can work with these individuals at every stage. Consider a gentleman with head control issues, a tracheostomy, and a feeding tube, who uses a power chair controlled by knee sensors. Even in this state, he may be uncomfortable, his wife may be struggling with transfers, or they may need expertise in selecting the right rolling shower chair to select to keep bathing safe. We are not only addressing the immediate moment but also looking ahead to be proactive.

When I see someone at my clinic, I try to stay ahead of the game. If a client is already using a walker, they need to start thinking about a power wheelchair because insurance takes time. Often, those using walkers stop visiting neighbors or going to the mailbox because the distance is too great. When people give up these desired activities, they rarely resume them, even after getting a power chair. I want people to know that a wheelchair is just a tool on their belt, and using one does not mean they are stuck in it. The standard of care worldwide is for ALS clients to visit a clinic every three months. If someone misses an appointment, the pace of change is so relentless that the next visit feels like six hours because so many issues have gotten ahead of them.

Much of our work centers on comfort and function. I have introduced dressing sticks for tasks like pushing up a bra strap, pulling up pants, or removing socks. If I have one available, I send it home with them because once their eyes are opened to a solution, they are much more likely to use it if it is already in their house. We also tap into loaner closets at community centers, churches, and organizations such as the ALS Association or the Muscular Dystrophy Association. It is vital to plan ahead for the time insurance takes to process orders. Many people tell me they do not need a ramp yet, but time is money; the more urgent the need becomes, the more you will pay and the less likely you are to get exactly what you want.

The OT brain specializes in thinking outside the box for uncommon solutions. With ALS, the pace of change is fast, typically ranging from two to five years. Someone whose first symptom is swallowing or breathing will have a very different trajectory than someone with finger weakness, yet the slope of that change tends to remain consistent throughout the disease. For some, particularly younger clients, that slope is as steep as a black diamond ski run. Because this pace is so relentless, there may not be time to wait for insurance or for year-long home renovations. Many clients suffer from shoulder and back pain due to instability or poor transfer techniques. Pressure injuries are also a major concern, particularly for those with orthopnea who cannot breathe while lying flat. These individuals are always on their bottom, which puts their skin at extreme risk.

We use devices such as mouthpiece ventilation, which allow a client to receive respiratory support without a full mask. This allows them to use the tilt and recline functions of their chair for pressure relief while still receiving air. We also manage the complexities of toileting and bathing. While ALS does not typically impact bowel and bladder control, issues like urgency or prostate problems in older men can complicate matters. Our goal is to stay proactive and manage these functional tasks before they become insurmountable barriers.

MS: OT Management

When we consider multiple sclerosis, it is vital that we understand the necessity of avoiding over-fatigue and overwork. Maintaining a cool body temperature is so critical that organizations like the MS Society often provide air conditioners to individuals because heat can trigger an exacerbation. If a client wants to be outside during a southern summer, they must wear a cooling vest with ice packs. While we might apply heat to a specific area, like a hand, we must be extremely cautious with heat modalities and avoid anything that could raise the overall core temperature, such as an electric blanket.

Independence levels for these clients can fluctuate significantly throughout the day. It is a challenge for families and caregivers to understand this inconsistency; they may feel the client is being lazy or uncooperative, even though the client could perform a task yesterday but cannot today. Many clients also deal with public judgment. They might park in a handicapped space and walk into a store, appearing fine, but by the time they reach the back of the building, they are completely fatigued and require a scooter.

Safety is a primary concern due to risks from falls, vigorous exercise, spasticity, and contractures. We also manage safety awareness regarding medication and appointments. For those with MS, dual-task performance, such as walking while thinking or carrying an item while sitting, is particularly difficult. If a client needs to have a concentrated conversation on the phone, they may need to sit perfectly still to manage the cognitive load.

My students often dislike my answer to what an occupational therapist should do for MS because I always say it depends. It depends on the symptoms, the duration of the disease, and the efficacy of their medications. There are over twenty disease-modifying drugs available to slow the progression from relapsing remitting to secondary progressive. One person might only have double vision and mild spasticity in one leg, while another is completely wheelchair dependent. We must also remember vision issues like optic neuritis and the fact that the steroids often used for exacerbations can lead to cataracts. This is similar to the long-term steroid use we see with Duchenne and Becker muscular dystrophies. When you have seen one person with MS, you have seen one person with MS. We must talk to the individual to identify what is important, what is unsafe, and how to be proactive.

Cognitive and behavioral deficits, such as stubbornness, apathy, or emotional volatility, can often be barriers to care. In diseases that progress slowly, such as MS, limb-girdle, or Charcot-Marie-Tooth, clients often have their entire lives and homes configured around a specific piece of equipment, such as a scooter. Moving to a complex power chair is not only an emotional blow to their identity, but it also disrupts their physical environment. The seat-to-floor height is often higher in power chairs to accommodate motors, which impacts transfers, toileting, and the ability to cook at existing counter heights.

A qualitative study by Burnett highlights the common belief that once a person starts using a wheelchair, they will never walk again. I hear this sentiment nearly ten times a week. I try to take the emotion out of the conversation and focus on function. I remind clients that the disease progresses whether they use a wheelchair or not, but choosing the chair is a tool for maintaining activity. It is a massive milestone, and we must build rapport by listening to their concerns. We should explain the cost-benefit of waiting versus acting now, while reassuring them that we will support their choices. Some clients may choose to forgo feeding tubes or respiratory support; while they have every right to make those decisions, it is our responsibility to help them understand how those choices will impact their life expectancy and daily trajectory.

MDA: OT Management

Our clinic serves both ALS and muscular dystrophy populations, and because the progression in muscular dystrophy is typically slower, we generally see these clients every six months or once a year. We work with everyone from infants to ninety-year-olds. Most often, the client is triaged by a neurologist, who then selects the allied health professionals they need to consult. While most see respiratory therapy for breathing tests, the physician often identifies specific needs for occupational therapy or nutrition. Many of these clinics, including those for MS, are regional specialties, meaning clients may travel from several states away. I am currently serving a nine-state area, so while I may not know every home health provider in a remote community, I make it my mission to help families find local resources. I am constantly making recommendations, coordinating with doctors to order equipment, and performing wheelchair evaluations when appropriate.

I am always looking down the pike to see what challenges are coming, even when the client cannot yet see them. One of my favorite tools for those with limited pinch strength is a specialized gadget with retractable pins. When you press it against an oven knob, a dryer dial, or even a gas cap, the pins retract around the object to create a firm grip without requiring a fine-motor pinch. This type of all-purpose tool has incredible applications for our population. For those with muscular dystrophy, we focus heavily on sit-to-stand transitions and fine motor struggles, particularly with myotonic and Charcot-Marie-Tooth disorders.

When working with younger clients, I provide school support. Although I am not a school therapist, I frequently write letters to advocate for 504 plans or Individualized Education Programs. To remind you, a 504 plan is designed to keep students on par with their peers by addressing physical disabilities, whereas an IEP is more comprehensive, often involving special education and various therapies. We also navigate vocational changes. If a client works in an office, I might suggest voice dictation, but for someone in a fast-paced call center or construction, the transition to disability may be necessary. Our social worker assists with disability forms, but we must warn families that the process often takes two years, though ALS cases are typically fast-tracked to six months. Finances remain incredibly tight during these transitions.

Managing daily tasks often involves very sensitive conversations. For instance, I recently worked with a seventeen-year-old young man who was struggling to use a urinal in his wheelchair without backflow issues. He was embarrassed, especially with his mother present, but as occupational therapists, we must be comfortable discussing everything from toileting to sexual function. We also address pain and injury prevention following falls, as well as the need for orthoses. If a client wakes up with their hands clenched due to spasticity, or if they need an AFO for positioning, we address those needs alongside a variety of adaptive equipment. I find it very helpful to have students follow up with clients via email to provide specific links and research for the specialized items we discuss during a visit.

Therapy for Progressive Diagnoses

I refer to the model of care for most individuals with progressive diseases as serial therapy. This involves providing a targeted period of treatment, typically lasting a few weeks to a month, to address very specific functional problems. Once those issues are managed and the client is stable, the practitioner concludes that episode of care. When the client experiences another downturn that changes their abilities, therapy resumes to solve the new set of challenges. Because these clients do not typically show classic rehabilitative improvements, you will not see them continuously for years; instead, you provide short bursts of intervention to address evolving needs.

For those with multiple sclerosis, therapy often begins following a relapse. A client might move from walking to not walking or develop hemiplegic symptoms. In these cases, we can focus on strengthening to help them return to their previous level of function. It is important to note that they usually do not exceed their baseline, and sometimes they do not fully recover it. I recently saw a client who had significant hand weakness from a relapse six months prior and was relying on tenodesis for function. She was still requesting strengthening exercises, which is a difficult situation because the window for significant recovery following a relapse typically occurs much sooner.

Our intervention might take place in outpatient clinics, home health, or school settings. We may be teaching a client how to manage new adaptations and technology or solving environmental barriers. This could involve finding specialized resources such as a rolling, tilting shower chair or a tub slider. Our goal throughout these serial episodes is to provide the specific information and tools necessary to navigate each new stage of the disease.

Progressive Disorders: OT Management

When we consider these types of changes, our approach must keep pace with the disease. A client with multiple sclerosis who is barely using a cane and has a slow progression managed well by medications does not need a conversation about a power wheelchair yet. Their trajectory is vastly different from someone with ALS who is already struggling with a walker. Similarly, boys with Duchenne often cannot use walkers due to the specific way their bodies weaken; they frequently transition directly from walking independently to using a power chair, scooter, or manual wheelchair. Our role is to meet them exactly where they are through frequent management and proactive care focused on independence and function.

Technology and adaptive equipment play a significant role in this process. I have another image of the Kinova Jaco robotic arm, which is controlled through the same interface the client uses for their wheelchair. During a trial, I watched a gentleman use it to bring a cup to his mouth for a drink, an act of independence he could not achieve without that technology. Beyond high-tech solutions, we also rely on classic tools, such as the dressing stick shown in the photos. Our work includes educating clients on safe, personalized exercise regimens tailored to their specific needs. If you want to dive deeper into the research on exercise for these populations, I encourage you to look at the first three sessions of this series. We must ensure clients can access what they need within both their homes and their communities.

I have occasionally encountered situations where I recommend outpatient or home health services only to receive a response claiming the patient has no need for therapy because they will not show improvement. I find that completely unacceptable. As the person who coordinated with the doctor to order the therapy and identified the specific functional needs, I often have to step in and provide professional education to these agencies. Because part of my role is grant-funded, I am able to pick up the phone and explain exactly why a client needs to be seen. I offer to assist with goal writing, management, or providing loaner equipment and education. We simply do not have enough practitioners in this field, and it is vital that we ensure our clients receive the services they deserve.

The Progressive Timeline

It is essential to pay close attention to the specific progression pattern of the disease you are treating. A condition that moves distal to proximal will present very differently from one that moves proximal to distal. You must consider whether the progression from standing to permanent sitting will happen rapidly or over a longer duration. You should also anticipate whether to expect trunk and neck weakness, spasticity, rigidity, spasms, or changes in reflexes. Understanding these clinical hallmarks allows you to help the client plan ahead and monitor their status effectively.

I often ask my clients how their progress has been over the past five years. When discussing wheeled mobility, this history helps me to explain why a more complex power chair is necessary, given their specific rate of change. Looking at the trajectory of the past few years gives us a much clearer sense of how quickly we need to implement new solutions to stay ahead of the disease.

I want to address specific types of weakness common to these disorders, beginning with dominant-hand and thumb weakness.

Dominant Hand/Thumb Weakness

When the dominant hand is impacted, the list of functional challenges is extensive. It affects holding a utensil or a pen, opening packets, jars, or bottles, and managing dressing tasks like buttons, zippers, and shoe tying. Grooming becomes difficult when a client cannot open toothpaste or apply makeup. We also see issues with technology, such as a finger not being strong enough to use a touchscreen without collapsing, or the hand lacking the grip to hold a phone without dropping it.

If a client presents with this type of weakness, we must help them think ahead. Every task, from securing the back of an earring to removing the seal from a syrup bottle or opening a jar of sauce, becomes a barrier. We might suggest replacing traditional buttons with magnets or finding alternative ways to secure shoes, such as elastic laces or magnetic closures that allow for easy slipping in and out.

One of my favorite unconventional tools for packaging is a small pair of needle-nose pliers. They require very little grip strength but provide immense pinch force. I have even had clients use one in each hand to pull open stubborn packaging or punch through seals. I personally keep a pair in my car and in my kitchen drawer because they are so effective. Providing options like these, or suggesting scissors or a utility knife for daily tasks, gives people practical management solutions to maintain their independence.

Bilateral Shoulder Weakness

If a client has bilateral shoulder weakness, as seen in conditions like fascioscapulohumeral or limb-girdle muscular dystrophy, as well as Duchenne and Becker muscular dystrophy, their functional limitations are significant. While some individuals with ALS or MS might start with one side worse than the other, bilateral weakness means they can no longer reach up to style their hair, don a shirt, or pull up their pants. It makes reaching into the laundry or even holding a towel to fold it impossible. My role is to help these individuals reorganize their entire environment. There is no rule stating that glasses must be kept on a high shelf; we move items to drawers or lower surfaces where they can be reached with a tool like a dressing stick or a reacher. I often suggest putting loops on items to make them easier to hook and manipulate.

I frequently recommend setting up a dedicated grooming station at a table. If someone cannot lift their arms to their face or armpits while standing at a sink, they must sit and prop their elbows on a stable surface. By creating a grooming station with a mirror, a cup, and their hygiene products all at table height, they can use one hand to support the other. This same principle applies to dressing. I teach clients to place a shirt face down on the table, slide their arms in, and then use the leverage of their propped elbows to get the garment over their head. A dressing stick can then be used to pull the back of the shirt down.

One of the most creative solutions I have ever heard involves a client with fascioscapulohumeral dystrophy who had severe upper-body weakness but retained some ability to squat. They were unable to pull their pants up past their thighs, so they placed a command hook on the wall at exactly the right height. They would get their pants as high as possible, shuffle over to the wall, hook the waistband on the command hook, and then shimmy into them. I absolutely adore inexpensive, outside-the-box solutions like that because they offer a path to independence that traditional equipment might not.

When we shift our focus to lower extremity weakness and gait changes, we see a whole new set of challenges. Whether it is the foot drop common in Charcot-Marie-Tooth or the profound hip weakness in limb girdle dystrophy, the priority is maintaining safe mobility. Many clients will initially compensate by changing their gait pattern, perhaps developing a Trendelenburg or a waddling gait. While these compensations help them stay upright, they often lead to secondary hip and back pain. We work closely with our colleagues to recommend appropriate orthotics, such as AFOs, to help prevent trips and falls. However, as the disease progresses, we must also have the difficult conversations about transitioning from walking to using wheeled mobility. It is not about giving up, but about choosing the most efficient tool to keep the client engaged in their life and community without the constant fear of falling or the exhaustion of struggling to take a few steps.

Progression- Self-Feeding

When we consider a task like self-feeding for someone with ALS, we often see a progression that begins with minor hand weakness. Initially, a client may simply need utensils that are larger or easier to hold as they transition from a fine manipulative grip to a more gross grasp. As the wrist becomes more difficult to coordinate and food starts falling off the spoon, we can introduce inexpensive, bendable utensils. By tipping and turning the utensil to the perfect angle, the client can scoop however they like and still have the spoon level by the time it reaches their mouth.

As the condition progresses and holding a utensil becomes too taxing, we might implement a universal cuff, a feeding strap, or a wrist support orthosis to provide necessary stability. Beyond that, we can look at a mobile arm support, which is a fantastic tool that uses rubber bands to offset the weight of the arm. These are often covered by insurance as a wheelchair accessory, provided you request the wheelchair mount rather than a table mount. For those needing even more assistance, there are power-feeding devices like the Obi, an amazing piece of technology, or the robotic arm shown in our earlier examples.

It is vital to keep pace with these stages to ensure clients can continue to perform their own daily tasks. A practical tip for using a universal cuff is that even if an item, like a large toothbrush, does not fit into the dedicated slot, you can often jam it into the elastic band next to the client's hand. The elastic's tension effectively secures the item, allowing us to stabilize a wide range of tools as the client's needs change.

Progression- Clothing

When discussing the progression of clothing adaptations, we have to look beyond traditional methods. One strategy for individuals who cannot pull up their pants is to use suspenders already attached to the waistband. While the client is sitting, they slide their arms into the suspenders and shimmy them up to their shoulders. As they stand, the suspenders act as a pulley system, drawing the pants up with them. While it may not work for every body type, it is a creative way to use a simple tool for a major functional gain.

For clients experiencing early fine-motor decline, we often recommend magnetic fasteners. You can sew magnets behind buttonholes to maintain a professional look while eliminating the need for precision. As mentioned, needle-nose pliers are excellent for small closures, and step-in shoes eliminate the need for laces. As the condition shifts toward gross motor challenges, adding loops to waistbands or socks allows the client to use a hook or a thumb to pull garments into place. Adding a simple keyring or a piece of ribbon to a zipper pull provides a larger target for those with limited dexterity. I also frequently recommend loose-fitting diabetic socks; they are much easier to manage for someone with hand weakness or reduced sensation than standard elastic socks.

If a client uses a wheelchair or a Hoyer lift, we may need to modify the structural seams of their clothing. For those using a urinal while seated, we can open the inseam from knee to knee and secure it with magnets or Velcro. This allows for direct access without the struggle of navigating over a zipper or a tight waistband. Another effective modification involves opening the side seams of pants from top to bottom and reconnecting them with magnets. This is particularly useful for toileting with a lift. You can detach the front of the pants while the back remains in the chair; the client is lifted with a divided leg sling, completes their business, and returns to the seat where the front panel is simply re-magnetized.

Using a divided leg sling is key for these techniques because it leaves the perineal area accessible while providing secure support under the thighs. Whether it is using a wrap skirt that can be easily undone or re-engineering sweatpants, we have to think differently to maintain a client's dignity and independence as their mobility needs become more complex.

Progression- Bathing

In the progression of bathing safety, we often start with simple modifications, such as mats or grab bars. While many practitioners have a knee-jerk reaction against suction grab bars, they can be a valuable tool for families to determine the optimal placement for permanent hardware. They are effective as long as the surface is free of soap scum and the suction cups do not cross grout lines. To maintain safety, they must be removed and re-moistened regularly; if left alone, they dry out and fail. If I can trust a caregiver to be responsible for maintenance, I will consider this a viable short-term option.

As the disease progresses, a client might move from a basic shower seat to a tub transfer bench or even a sliding system. I advise clients to think ahead and spend money once on high-quality equipment rather than buying multiple intermediate pieces. For those considering bathroom renovations, it is crucial to consult an expert. Even beautiful renovations, like the one in our example with a high step-in and a tall mirror, are often functionally useless for someone with progressive weakness. I frequently connect families with OT groups specializing in home modifications to ensure their investment actually improves accessibility.

For environments where a traditional renovation is impossible, a portable shower can be a life-saving alternative. These systems cost between 1500 and 2500 and use a pump to draw water from a sink and return it after use. This allows for safe bathing in any room with warm water, saving the family tens of thousands of dollars. Similarly, a full-rolling shower chair or tub slider system may seem expensive at several thousand dollars, but it is a fraction of the cost of a 40,000-bathroom overhaul.

When space is tight, and a Hoyer lift is not an option, I sometimes suggest looking at an engine hoist from a tool shop. A track and power hoist for an engine can often be purchased for under $1000, whereas a ceiling-mounted medical lift can cost $15,000. Finding these "random" and more affordable solutions is key to keeping people in their homes. If a family is going to invest in a rolling shower chair, I insist on one with tilt-in-space functionality. A chair that tilts can accommodate head and trunk weakness and serve as a commode over the toilet, ensuring it remains useful even as the client's needs become more complex.

Progression- Bed Issues

When addressing bed mobility and safety, simple modifications can often be more effective than high-tech medical equipment. For one client, I used several yards of heavy belt webbing—the kind used in beach bags—and tied it tautly between the bedrails. This provided a secure, accessible grip for repositioning when standard bed canes or rails weren't an option. If a client struggles to manage multiple layers of bedding, I suggest using Velcro to join the blankets and adding a large loop. This allows them to pull all the covers up simultaneously using a gross motor movement, even just by hooking an elbow.

For those who need their head of bed elevated but aren't ready for a hospital bed, the Mattress Genie is a helpful option. It is an inflatable, wedge-shaped air bladder that sits between the mattress and the box spring. Controlled by a pump, it lifts the mattress head on demand. This is often a great way to maintain the comfort of a standard bed while continuing to sleep with a partner. While hospital beds are available, their mattresses are often of poor quality. If a client cannot afford a new one, I frequently find free options on local community marketplaces, though I always prioritize models with adjustable height for safer transfers.

To manage the risk of skin breakdown, we look at various mattress overlays. Clients at risk for pressure injuries can use gel or air overlays to improve distribution. Group 2 overlays, such as low-air-loss systems, are far more substantial and provide excellent protection, though insurance typically requires an existing wound for coverage. Understanding the maximal potential of what a client qualifies for is a key part of our expertise.

For some, lateral rotation technology is the factor that allows them to live at home rather than in a nursing facility. One of my friends with a spinal cord injury was able to return home because her bed slowly tipped her from side to side throughout the night. This automated repositioning kept her skin safe even though her parents were physically unable to perform manual turns. This specialized equipment is a game-changer for maintaining safety and independence in the home.

Foam, Coban, Dycem, Wire Ties

I utilize various creative materials to adapt everyday items, often looking beyond medical-grade supplies. Coban, which sticks to itself, is excellent for adding grip, as is Dycem. I also use rubber wire ties, like the ones shown wrapped around a makeup brush; they can be manipulated into any shape to provide a customized handle. To build up a stylus handle or a utensil, I often use simple gray foam insulation from a hardware store. These non-medical materials are incredibly effective for increasing the diameter of objects for clients with limited grip. I frequently tell people to wander through local hardware stores, especially those with experienced staff who understand construction and mechanics, because they often suggest ingenious, inexpensive ways to solve complex functional problems.

Splinting Material Uses

I often use scrap splinting material to create highly customized, functional tools. One of my favorite adaptations is a guitar pick holder, which I found through community resources, and various methods for stabilizing a pencil or pen. I rarely create traditional orthoses; instead, I focus on "scrap" solutions for specific problems. For example, I once worked with a client who couldn't use a standard TV remote with his hands. We mounted the remote on an easel at his feet, and I fashioned a splint for his toe, which he creatively named the "toe-troller," so he could keep his television under control.

The possibilities with scrap material are truly limitless. Even a thin piece of material wrapped in a figure-eight around a finger can provide enough stability to help a client strike keys or buttons more effectively. These low-cost, targeted adaptations are often more impactful for daily living than more formal, rigid splints.

Velcro/Strapping

I use Velcro in simple, effective ways to prevent essential items like phones or tablets from falling. By wrapping a strip around a client's thigh and placing the opposing material on the device, I can secure it directly to their lap. One of my favorite techniques involves taking two strips of non-adhesive Velcro and interlocking them to form two circles. One loop secures the item—whether a razor, a hairbrush, or even a garden rake—while the other serves as a hand slot. This creates an instant handle for virtually anything using scrap material that clients can buy very cheaply at any fabric store.

The creativity inherent in occupational therapy allows us to solve complex communication barriers as well. I worked with a client who had lost her voice entirely but remained an incredibly fast typist. She used communication software on her iPad, but she was forced to type with one hand while carrying it, which made her conversations painfully slow. Using scrap splinting material and Dycem, I fashioned a customized tray that rested against her abdomen. This allowed her to walk around while typing with both hands, significantly increasing her communication speed. Experimenting with these types of creative options is one of the most rewarding parts of managing progressive disorders.

Typing Aids & Stylus Options

I have found that many occupational therapy practitioners are unaware that standard styluses and touchscreens require conductivity to function. The electrical current from the body must travel through the device to the screen, so if you wrap a stylus in thick foam for a better grip, it may stop working if the client's skin is no longer in contact with the metal or conductive material. To solve this, I use a fabric called gold lamé, which contains metallic threads. By wrapping a tool in this fabric and ensuring the fibers touch both the screen tip and the client's skin, I can turn virtually any object into a functional stylus. There are countless specialized styluses available, from T-bars to pointer sticks, but understanding this principle of conductivity enables much more flexible, inexpensive customization.

I also prioritize finding the right typing aids to match a person's remaining movement. For some, a pointer attached to a hand splint is the most efficient method, while others may benefit from specialized software that reduces the need for physical keystrokes. Whether it involves high-tech eye-gaze systems or a simple piece of metallic fabric, the goal is always to maintain the client's ability to communicate and interact with their digital world. Ensuring they can continue to use their phone, tablet, or computer is often one of the most significant factors in preserving their quality of life and social connection as their physical abilities change.

Gooseneck Material

I use gooseneck tubing as a versatile solution for holding various items in place, as seen in these examples. Originally designed for industrial use in factories and painting, it is now widely applied in assistive technology. This material can be used to mount drink holders, long straw holders, switches, and the mouthpiece ventilation equipment I mentioned earlier. There are companies, such as Giraffe, that even offer long straws embedded directly inside the gooseneck for added stability.

The tubing is available in various strengths, densities, and lengths and operates similarly to heavy-duty pop beads. While it takes significant effort to snap the links together, this design allows for complete customization of the length. For clients who need a hands-free hydration setup, like the one in the bottom picture, I recommend looking for extra-long straws—typically 20 to 24 inches—which the client or caregiver can then cut to the exact length needed. This allows for a hydration system that is perfectly positioned regardless of the client's posture or seating arrangement.

Computer Access

When discussing computer access, we should consider unconventional control points, such as the feet and toes to hit a switch or operate a mouse. A client might use a simple rubber wire tie to reach the keys on a keyboard, or we might transition them to an on-screen keyboard. It is important to remember that every modern computer, tablet, and smartphone has a robust set of built-in accessibility features designed to enhance the effectiveness of the keyboard and mouse.

The shape and type of mouse can also be adapted. For example, a trackball mouse stays in one place, which is perfect for someone who cannot move their arm across a desk. I often suggest placing it on the lap and using the side of a finger to roll the ball, eliminating the need for a traditional hand position or the fine-motor demands of an index-finger double-click. For many, voice dictation has become a primary tool, while others may eventually require scanning or eye-gaze systems.

The integration of technology is especially powerful with complex power wheelchairs. Most of these chairs feature built-in Bluetooth, which allows the joystick or whatever drive control the client uses—whether it is a head array or a sip-and-puff system—to act as a wireless mouse for their computer, phone, or tablet. This connectivity can extend even further to control a smart home environment. Once these possibilities open up, a high-end wheelchair becomes more than just a mobility device; it becomes a hub for communication and independence.

Phone Access

When discussing phone access, it is crucial to recognize that smartphones offer immense accessibility that often goes untapped. I encourage clients to explore these features, visit their state’s assistive technology center, or contact specialized support lines to adapt their phones for their specific needs. Many users are unaware that they can enlarge icons, simplify the interface, or set up one-touch dialing for emergency contacts.

There are also numerous hardware adaptations, such as Bluetooth headsets and switch-accessible interfaces. A client can use a single external switch to answer calls or navigate the screen. Because technology changes so rapidly, I often refer families directly to the accessibility helplines for major carriers and manufacturers. Apple, Google, and Samsung all have dedicated teams who are experts in their products' specific accessibility settings. These helplines allow our clients to get expert guidance without having to wait in the general customer service queue.

I also make sure my clients are aware of their state's Assistive Technology Act Program. These programs provide free information, device loans, and demonstrations to help individuals find the exact tools they need. By leveraging these existing resources—from the built-in software to specialized support teams—we can ensure that a phone remains a lifeline and a tool for independence, regardless of a client's physical limitations.

Mobility Options

I recommend getting clients to a specialized seating clinic as early as possible to explore the full range of mobility options. This can span from a basic manual chair or scooter to highly sophisticated custom power wheelchairs. For example, a client with minimal movement can drive a chair using fiber optic switches. These work by creating a beam of light, similar to a fiber optic Christmas tree; when the client breaks that beam with a tiny movement of a thumb or finger, the switch activates. I have seen clients navigate complex environments using just two of these switches—one for left and one for right—tripping both simultaneously to move straight ahead.

Custom electronics allow us to utilize whatever consistent movement a client retains. I once worked with a gentleman who controlled his chair using only the slight flexion of his index finger and a tiny movement of his thumb. Another client with ALS used sensors mounted on goosenecks positioned near both knees. These sensors didn't even require a physical strike; she simply had to move her knee close to them. By using abduction and adduction of her legs, she could control forward, reverse, left, and right movements, even though she had no upper-body function remaining.

The technology available today is truly remarkable. There are wheelchairs controlled entirely by eye-gaze systems or switches tucked into mouthguards and dentures. We can mount switches almost anywhere a client has a reliable "flick" of motion. Whether it is a basic power chair or a high-end system with specialized sensors, these tools are what allow people with progressive disorders to remain mobile and engaged with the world even as their physical strength declines.

Electronics

The possibilities for using electronics to keep people engaged in their lives are vast. Beyond mobility, we must consider how a wheelchair can serve as a central hub for controlling a client's entire environment. Many individuals do not realize that they can often interface alternative wheelchair controls with older home electronics, such as televisions or DVD players. Even if they aren't using a smartphone for everything, we can often program the wheelchair's input system to manage basic functions like changing channels or adjusting the volume.

For clients who require a caregiver's assistance, an attendant control—which is essentially a second joystick mounted on the back of the chair—allows the caregiver to navigate the chair safely in tight spaces. Another critical piece of technology is the power inverter. This device takes the current from the wheelchair batteries and converts it into a standard power source that can run a ventilator, charge a phone, or power a laptop. For my patients on mechanical ventilation, an inverter grants them the freedom to leave their homes, as they are no longer restricted by the limited lifespan of an internal ventilator battery.

We also make sure to include dedicated charging ports on the chair, whether they are USB or USB-C. This ensures a client's phone or tablet remains powered throughout the day, a vital safety measure for emergency access. Being able to keep these devices running means people have significantly more freedom and can stay active in their communities. These integrated technological solutions mean that even with complex needs like respiratory support, a client can remain mobile, connected, and safe both at home and on the go.

Home Modifications

When considering home modifications, it is essential to focus on long-term utility rather than short-term fixes. For instance, families often spend significant money on stairlifts to access a second floor. However, these units become ineffective if a client develops poor sitting balance, head instability, or spasticity that makes them slide out of the chair. Furthermore, a stairlift cannot transport a complex power wheelchair. I encourage people to develop a more sustainable plan, such as moving essential living spaces to the ground floor, installing a portable shower, or considering a more extensive renovation or move.

Accessibility often starts with clearing the environment. Many homes have narrow doorways and cluttered entryways that make it impossible to navigate even with a cane, let alone a walker or wheelchair. For bathroom access without a full renovation, I often suggest tub slider systems. These consist of a rolling chair that hooks onto a bridge connected to a base inside the tub, allowing the seat to slide across into the bathing area. While these systems can cost between $4,000 and $5,000, they make a standard bathtub accessible for a highly dependent client, saving the much higher cost of a complete bathroom remodel.

Safety planning must also include emergency egress. Having one ramp at the front door is not enough if a fire breaks out in that area. We must help clients identify a secondary exit, even if it means figuring out a way to safely exit into a backyard. In the kitchen, accessibility doesn't always require a total overhaul. A client can create necessary knee space by removing a single cabinet section under a sink or workspace while leaving the rest of the kitchen intact. I have even seen modifications where cabinet doors slide inward and the bottom shelving is removable, allowing the space to transition between standard storage and wheelchair accessibility as needed. These relatively inexpensive changes can make a significant difference for renters or those with a limited budget.

Funding/Ordering

When navigating the complexities of funding and equipment procurement, it is vital to connect clients with assistive technology and seating clinic specialists. These professionals are essential for maximizing what insurance will cover, especially as policies become increasingly restrictive. It is important to help clients understand the different funding landscapes. Medicare, a federal program for those over 65 or on disability, typically covers 80% of the cost of medically necessary items. While this is a federal standard, local implementation can sometimes vary.

Medicaid, on the other hand, is managed state by state. While it often covers 100% of the cost for approved items, the list of what they consider "covered" can be quite limited, depending on the client's location. Private insurance is even more variable; we must help clients investigate their specific deductibles, out-of-pocket maximums, and whether their plan follows Medicare guidelines. It is worth noting that Medicare Advantage plans are legally required to provide coverage that is at least equal to traditional Medicare, which can be a strong point for advocacy if a claim is initially denied.

When insurance falls short, we turn to community resources and organizations specific to the diagnosis. Groups like the MS Society often offer grants or equipment loaner closets for their members. For those with ALS, Team Gleason—founded by former NFL player Steve Gleason—is an incredible resource that provides loaner equipment and technology. Additionally, the Muscular Dystrophy Association (MDA), the ALS Association, and ALS United offer various grants and support programs.

I believe our role is to present all available options to the client, whether through insurance, private fundraising, or non-profit grants. By providing this expertise, we empower them to decide what is worth the financial or advocacy effort. Whether it is a specialized piece of technology or a necessary home modification, helping clients find the right funding path is a critical step in maintaining their independence and quality of life.

Treatment/Goal Ideas

When establishing treatment goals and plans for clients with progressive disorders, the focus must shift away from traditional strengthening. Because these individuals generally cannot regain lost muscle power, our interventions center on maintaining function and independence. However, this does not mean there is no therapeutic work to be done. We can address leisure activities, such as painting or gardening, using the same adaptive grips or loops we would recommend for self-feeding or grooming. By focusing on what the client enjoys, we can build the skills and tools they need for daily survival in a more engaging way.

In our goal setting, we must anticipate little to no improvement in physical strength or fine motor skills. There are specific exceptions, such as recovering to a baseline after a hospitalization for pneumonia or a fracture, or managing "disuse atrophy" in someone who has been sedentary. For the most part, however, goals should be oriented toward occupational performance, safety, and the effective use of adaptive equipment. We focus on independence in transfers, fall risk reduction, and caregiver training rather than repetitions of an exercise.

Sample goals might include the client's ability to initiate regular pressure relief to avoid skin breakdown or their proficiency in using adaptive tools to complete dressing. If a client is experiencing discomfort, a goal might focus on pain management through positioning or equipment modification. While electronic medical record systems often have templated goals, I recommend using free-text options to customize them to the specific needs of these populations.

Health management is another critical area for goal setting. This can include the client or caregiver performing daily range-of-motion exercises to prevent contractures or managing complex medication regimens and communication strategies. We might also set goals around emergency management, ensuring the client has a reliable way to call for help. There is always significant work to be done with these individuals; our success is measured by their ability to stay safe, comfortable, and active in their lives as their condition evolves.

Case Studies

I have included several case studies to help us quickly explore how these adaptive strategies and technological options apply to real-world scenarios. By walking through these specific examples, we can better understand how to tailor our interventions to each client's unique progression of their condition and their individual functional goals.

ALS

Janet's situation is a prime example of why we must look ahead, even when a client is resistant to making changes. At 46, her choice to rely on a manual wheelchair and her husband for mobility creates a significant safety gap when she is home alone. While she currently achieves a level of modified independence by using a recliner lift chair to stand at her walker, the increasing difficulty of this task signals an imminent transition. I have been encouraging her to visualize what happens when she can no longer stand independently or propel herself. If she remains in a manual wheelchair and lacks the strength to move it, she becomes stranded in her own home, posing a major safety concern.

For her daily routines, we implemented a mobile arm support to assist with self-feeding. An alternative, lower-tech solution involves elevating her entire workspace; by placing both her plate and her elbows at mouth level, she can eat with minimal vertical reach. We also looked at pre-setting hydration with long straws and specialized bottles so she can drink without needing to grasp or lift. Her shoulder pain is another priority, likely stemming from the proximal weakness common in ALS, which we can manage through better positioning and support during her seated hours.

The claim from a home health therapist that there were "no goals to work on" for Janet is a significant misunderstanding of progressive care. Looking at her needs, I see a clear list of vital interventions: emergency egress planning, establishing a safe toileting transfer method that doesn't rely on her husband, and training in the use of adaptive bathing equipment. Even if these goals are only relevant for a few months before her status changes again, they are essential for her current safety and dignity. Our work with Janet isn't about long-term strengthening; it’s about solving the immediate, high-stakes problems of how she pees, eats, and gets out of the house in an emergency.

MS

Megan’s transition to secondary progressive MS highlights the difficult shift from active independence to requiring complex technology. Because she can no longer stand and her "scoot" transfers take 15 minutes, she is at a high risk for both exhaustion and skin breakdown. The 15-minute transfer is simply not sustainable or safe. While she has a sliding board and a Hoyer lift, neither of these allows her to be independent. The home health OT’s role here was vital—not in "fixing" her mobility, but in re-engineering her environment to accommodate a larger, more complex power chair. When a chair gets bigger and adds features like tilt and elevate, the old transfer heights and countertop levels often stop working.

Caring for grandchildren adds a significant layer of complexity to her case. While the power chair might help her keep up with them physically, we have to look at the "what ifs." If she has hand numbness, can she safely intervene if a child is in danger? Does she have an emergency plan to get herself and the children to a storm shelter or out of the house during a fire? Her goals should focus on these high-level safety management strategies and perhaps on using voice-activated smart home technology to monitor the kids or call for help.

For her quality of life, we need to leverage that complex chair to get her back into gardening. The seat elevation feature can allow her to reach raised beds or hanging planters that were previously inaccessible in her basic chair. The transition to a "big" wheelchair is often a grieving process; it’s common for the chair to sit in a spare room until it becomes the only option. Once she sees it as a tool that restores her ability to be outside and manage her home, rather than a symbol of her decline, her engagement in therapy will likely shift.

DMD

Joe’s case with Duchenne muscular dystrophy illustrates the high-level advocacy and safety coordination required for a client who is fully dependent on technology and caregivers. Because he relies on a ceiling lift for all transfers and a ventilator for breathing, his primary goals shift toward advanced safety systems and caregiver management. When a client is ventilator-dependent, the concern about caregiver incapacitation is a life-and-death issue. We focus on implementing environmental controls and "fail-safe" alarms that allow him to trigger a high-decibel signal or an automated emergency call if his ventilator disconnects or his overnight caregiver is unresponsive.

Caregiver training is a constant priority for Joe. New staff must be proficient in their specific range-of-motion protocols and in the application of new wrist and hand orthoses. These orthoses aren't meant for functional gain but for preventing painful contractures and maintaining skin integrity. We also coordinate closely with the wheelchair supplier to adjust his seating system; for someone who spends their entire day in a chair, even a slight shift in pressure or the addition of a customized cushion can be the difference between comfort and a pressure injury.

Our work with Joe also involves optimizing his interaction with the world despite his minimal movement. This includes setting up Bluetooth interfaces through his chair to allow him to communicate or control his environment. We ensure he has multiple ways to call for assistance, ranging from mouth-activated switches to sensitive fiber-optic sensors. The focus is on creating a secure, comfortable environment where Joe remains the director of his own care, ensuring he has the tools to stay safe even in the most vulnerable scenarios.

CMT

For a client with Charcot-Marie-Tooth (CMT), the primary challenge is often the disconnect between intended movement and actual muscle performance, particularly in the distal extremities. To address her constant dropping of items, we shift the focus to compensatory strategies. This includes "visual attending"—consciously watching her hand grip the object to replace lost proprioceptive feedback. We also implement mechanical fixes, such as adding loops to handles or using "D-rings" so she can secure items around her hand rather than relying on a weak pinch grip.

To manage the frustration of picking up dropped items, we can use a reacher or dressing stick with magnets or adhesive putty to capture small objects without requiring fine-motor precision. For her workplace concerns, we look at reducing hand strain through ergonomic supports and high-diameter writing tools. If hand cramping is severe, we explore voice-to-text software and specialized keyboards to reduce the mechanical demands of typing, allowing her to conserve energy for other tasks.

Home management for someone with CMT requires addressing both safety and fatigue. For cooking, we can introduce protective "finger guards" and rocker knives that use downward pressure rather than a slicing motion, reducing the risk of accidental injury. We also look at lightweight alternatives for heavy household chores, such as robotic vacuums or long-handled tools that allow her to maintain a neutral wrist position.

Whether in an outpatient or home health setting, the goal is to provide a comprehensive suite of "hacks" that restore her confidence. By addressing the mechanics of her grip and the safety of her daily tasks, we help her maintain her employment and her ability to manage her home without the constant fear of dropping items or causing self-injury.

Conclusion

Patients with progressive disorders require focused, frequent intervention to stay ahead of their changing needs. Success in this area often requires a proactive approach and a heavy dose of creativity. Using "trash and true tools"—such as scavenging high-density packing foam or collecting scrap splinting material and Velcro from student programs—allows for a toolkit of solutions that insurance will not provide.

If a specific solution is elusive, diagnostic organizations are key resources. Groups like ALS United or the Muscular Dystrophy Association have clinical specialists who can answer technical questions or connect you with clinics that have solved similar problems. These organizations are also excellent sources for finding specialized loaner equipment or grant opportunities to bypass traditional insurance hurdles.

Leveraging every available resource, from professional networks to DIY adaptations found online, is essential. Using a piece of foam under a footplate or a scrap of plastic to stabilize a finger is effective if it keeps a patient functional. Tapping into this creative problem-solving is what allows clinicians to keep people active and independent even as their physical abilities fluctuate.

Questions & Answers

Do you have any additional info for those not at home for adaptation?

Yeah, absolutely. It’s always harder because, in these cases, the nursing facility is responsible for paying for equipment, not insurance. This makes the process very difficult, and you often have to rely even more on "trash to treasure" techniques to manage.

What does that look like in practice for patients in facilities or in hospice?

That could honestly be a whole other course. For folks in nursing facilities or on hospice, where insurance doesn't cover items, it involves a lot of loaners and "glomming" things together. I’ve worked with facility OTs a number of times to try to get our patients to stay as functional as possible through these creative workarounds.

References

See additional handout.