5

Rehabilitation: Slow and Steady Wins the Race

Five Steps to Getting the Most from Rehabilitation and Restoration Therapies

MY First Goal In rehabilitation was to improve my independence. I wanted to be able to do the “big” things, like getting in and out of bed, or on and off the toilet, on my own—and ASAP. But this goal changed as I took a more careful look at my day-to-day needs. Meals were essential, and I couldn’t feed myself. As I envisioned my life at home, I didn’t like imagining my wife spoon-feeding me, and knew it would add one more burden—three times a day, seven days a week—to her already overloaded schedule. As eager as I was to regain some of my dignity in the bathroom, I decided that being able to feed myself independently would be my number one priority.

My injury had made it difficult for me to swallow, because some of the muscles and nerves that coordinate swallowing were not working after my injury. Even after my ventilator was removed, I wasn’t allowed to eat, because I was at risk for aspiration pneumonia. This is a serious complication in which food, during swallowing (the food bolus in blue), partially goes down the trachea under the epiglottis—not down the esophagus like normal (Figure 14). Dysphagia (difficulty swallowing) is a common problem, so it’s possible that your rehab will include relearning how to swallow.

Figure 14: Aspiration pneumonia

Thanks to my therapy team, my ability to swallow eventually improved enough for me to eat solid food. With that accomplishment behind me and the limited use I had gained in one arm, I was in a rush to start using utensils, especially a fork and a knife. But I was too weak (and clumsy) to hold a fork and bring food to my mouth. It was frustrating to spend several minutes trying to stab a single piece of food—only to have it fall off my fork. More food landed in my lap than made it into my mouth, so after every meal I would need to change my clothes. After two weeks of trying, I decided to hold off on eating independently until I was physically strong enough, which turned out to take almost three months.

This chapter is all about helping you get the most out of the physical, occupational, speech, psychiatric, and other therapies that are part of getting back to life after injury. The goal of rehabilitation specialists is to find ways to improve your quality of life. By working with your existing capabilities and deficits, your therapy team will help you develop your functional abilities to their fullest extent, and teach you adaptive behaviors as well. There’s no set timetable or formula for rehabilitation, but the objective is always the same: to help you achieve the ability to enjoy a full life as independently as possible.

Aphasia and Balance

If you have suffered a stroke or TBI and have been left with aphasia (difficulty with verbal and written communication), improving your ability to speak and to understand others is likely your number one goal. The frustration of not being able to communicate your needs or, even worse, not being able to understand what people are saying, is significant and can lead to a devastating sense of isolation. Your neurologist should be someone who has expertise in aphasia, and they will refer you to a speech therapist (also called a speech pathologist) who specializes in aphasia. If you live in or near a city, these providers will be able to recommend an aphasia group for you to attend (be sure to ask about it if your providers don’t mention it). These gatherings, which are led by an experienced speech therapist with a specialty in aphasia, are an excellent way to enhance your rehabilitation. Your fellow participants will also be experiencing aphasia and will be at different stages of recovery. In this supportive environment, you will make progress toward your goal while benefiting from the inspiration and experiences of others in the group.

If you have experienced a TBI, your top priority might be improving your balance. Among other things, TBI can result in sensory loss and dizziness. These changes predispose you to falls and injuries, so working on improved balance and visual cues may be the most important initial goal for you.

Your Rehabilitation Program: The Five-Step Plan

As you embark on your rehabilitation, the following five steps will help set the stage for success. You will: 1) determine your personal goals; 2) prepare yourself mentally; 3) make a schedule; 4) practice, practice, practice; and 5) establish how to pay for your rehabilitative services. Let’s look at each one.

1. Identify your goals (and what stands in the way of reaching them). All ANIs affect multiple organ systems, because the brain and spinal cord control the function of all organ systems. Therefore, rehab must be multidisciplinary and it requires a team to provide appropriate care. For example, I performed OT and PT every day, with special sessions on shoulder therapy. I also saw a speech-language pathologist (SLP) three times a week to help me with swallowing. I was fortunate that my speech, vision, and language processing were not affected by my injury. These can be the major problems in people with stroke and TBI. When setting out on your rehabilitation journey, consider which functions are the most important for you to regain. Start by writing a list of your goals in a dedicated rehab book or spreadsheet, and then prioritize them by asking yourself this question: Which ones would make the greatest difference to my quality of life? The one that lands at the top is where you should begin. Discuss that goal with your therapy team—they can help you figure out which goals are most achievable, and in what order. Remember that success generates more success, so make your first goal attainable. Keep in mind, though, that your priorities can change along the way, as mine did. That’s OK; it’s all part of the journey.

2. Prepare yourself mentally (believe in and visualize your success). As we saw in chapter 2, the connection between the body and the mind is astoundingly powerful. Professional athletes have long worked with sports psychologists and used visualization to mentally rehearse their performances. This successful technique can also be useful in your rehabilitation. Visualization involves creating a mental image of what you want to see yourself doing and/or feeling. And repetition is important. When you “watch” the images in your mind over and over, you are actually training your mind and body to be more successful at the task. That’s why you must visualize success. The ability to imagine achieving a difficult physical task is fundamental to successful rehabilitation. There are three essential tactics: mental rehearsal of the task, relaxation, and emotional control.

• Mental rehearsal is imagining yourself performing the task as carefully as you can. I watched YouTube videos of people learning to walk again, which made it easier to visualize doing this myself. In the future, virtual reality goggles will make it so you’ll be able to see yourself walking in a much more realistic manner, which will be much better for visualizing.

• Mental relaxation is an important component of visualizing your achievement of a goal. Great athletes compete in a state of relaxation, and the same idea applies to your rehabilitation. Eliud Kipchoge, a Kenyan long-distance runner, is the first person ever to run a marathon in under two hours. When asked how he did it, he said, “I was really calm. … I have been training for this for four and a half months. I have been putting my heart and mind to run under two hours for a marathon.”¹ His approach to a huge physical challenge was to train his mind and his body to be relaxed. You can achieve this state with the same techniques: practicing visualization in a relaxed state and focusing your thoughts on reaching the goal.

• Emotional control is primarily about decreasing your fear through conditioning and practice. When I was learning to walk again, taking the first step using my platform walker made me extremely anxious, because I was afraid of falling. My therapist helped by holding and steadying me as I took one step forward. I repeated this many times until I was comfortable enough to maintain almost all my weight on one foot. Walking can also be practiced with a robot that assists your legs and holds you up, a treadmill with body support and therapists moving your legs, or an overhead body weight support system that prevents you from falling.

Remember that your therapists can best assist you because they know your abilities better than anyone. They know your strength, balance, and the range of movements that you can attempt safely. Their guidance is invaluable, because if you hurt yourself, you will set yourself back weeks or even months. That’s why slow and steady always wins the race.

3. Set a schedule and stick to it (and put it in writing). No matter how hectic your life may be, set a schedule for your rehabilitation therapies and stick to it. Each type of therapy will be targeted at specific goals; be sure to record each of your sessions and keep track of your progress. Whether you are the person writing down the schedule and goals or they are being written and updated by someone else in your household, having a written log is valuable. Describing your goals in written form is strongly associated with success in attaining them; in fact, putting pen to paper makes it more than four times as likely that you will reach your objectives.² When you write things down, you have something tangible to look at as a reminder—every day, if you make looking at the calendar/notebook a daily event. Neuropsychologists say this visual cue influences your determination to get something done. When you keep a notebook, you are creating a picture in your mind, which makes your mind more efficient when it focuses on the important stuff.

4. Practice makes perfect. It will require thousands of repetitions for you to master some of the skills and goals on your list. In other words, becoming good at something requires practice—and lots of it. When you are working to recover from your injury, you will need to relearn things you used to do without thinking, by practicing the exercises your therapists teach you, again and again.

What’s going to motivate you to practice so intensively? For me, it was my strong desire to be a participant in family holiday traditions throughout the year. Those gatherings are filled with happiness, joy, love, and laughter. So it was wonderfully helpful when my daughter taped large photos of my grandchildren to the wall facing my bed. Looking at those smiling, hopeful faces every morning gave me the strength to keep going, no matter how discouraged I was or how much pain I was in. Identify a big motivator (or two) of your own and use that as you become dedicated to a heavy-duty routine of practice, practice, and more practice.

Insurance companies and most doctors recommend that rehabilitation should be continued until you reach a plateau, which varies greatly among people. Rehabilitation is tightly linked to neurological recovery, which depends significantly on the severity of your injury. In general, most patients have their most rapid recovery early on (one to three months), with a slowing in recovery over time. But I firmly believe that you can still recover significantly over time, by continuously performing general strengthening and range of motion exercises as well as specific tasks. For example, I stretch and lift weights, primarily for my upper body, three times a week and practice holding a wine glass, using eating utensils, brushing my teeth, and opening the mail (with a letter opener).

5. Determine where to perform rehab after discharge and how to pay for it. The facility for rehabilitation after discharge should be based on your degree of independence in activities of daily living (ADL). If you have mild functional impairment, you will likely do well at home with home health care or outpatient follow-up. For example, when I left Kessler, I wasn’t ready to go home, because I had not developed a reliable bowel program and could not transfer from my bed without a Hoyer lift (Figure 37; see page 216). If I had been more independent, I could have gone to a skilled nursing facility. Instead, I remained a patient in a rehab unit of Strong Memorial Hospital. This enabled me to continue three hours of OT and PT each day while I worked with an aide who would later join me at home every morning and night to assist me with personal care and eating. It took me nineteen days to master the tasks necessary for me to live comfortably and safely at home.

The doctor overseeing your care in the hospital will refer you to the outpatient services you will need after discharge and the therapists who will work with you as part of your rehabilitation. As discussed in chapter 3, you’ll need referrals and a prescription for specific rehab therapies, if you want your insurance plan to pay for your care. Keep a notebook where you write down every interaction with your insurer. Your choice of insurer will be largely determined by your employment status and financial resources. The most likely ones will be your employer’s insurance plan, public insurance (Medicaid, Medicare, and SSDI), disability insurance, your local for-profit (e.g., Aetna, and United Health Group) and not-for-profit health insurers (e.g., Blue Cross/Blue Shield, and Kaiser Permanente), and life insurance.

The Social Security Administration (SSA) offers disability benefits, including those for military veterans whose disability resulted from service injuries. The SSA also offers information on how to make the most of your benefits if you choose to continue working, so you can use this compensation to pay for necessities like home modifications. If you are sixty or older, your local senior center will likely have an expert on SSA who meets (for free) with anyone who needs help getting information. You can also attend free presentations on Social Security benefits at your local public library.

Explore free community resources that can help you and your family if there are gaps in your insurance policy. If you live near a university or medical school, you may be able to take advantage of the hands-on clinical hours that students in rehabilitation therapy programs are required to complete (including occupational, physical, and speech therapy). You may also be able to use the school’s fitness center at no charge—something we offer at the University of Rochester Medical Center—where exercise physiologists will help you plan a workout routine.

There are foundations across the country that support people with disabilities, with chapters in many communities. Usually, their focus is on supplying durable medical equipment needs such as wheelchairs, hospital beds, shower chairs, standing frames, electronic devices, and so on (see chapter 15 for more on this). Some nonprofit organizations are committed to providing money to help pay for the cost of renovating a home bathroom to be accessible, for example, or installing an exterior ramp for a wheelchair. Others have funds designated for things like specialized wheelchairs for sports, hand bicycles, or sit-skis for snow and water skiing. You’ll find a list of these organizations in the Resources section at the back of this book.

There are several ways to reduce the costs of your recovery and rehabilitation. To keep the cost of drugs down, you can buy generic drugs whenever possible and use mail-order pharmacies for a three-month supply at a time. If you qualify for public insurance, these programs offer rehabilitation for free or with a small copayment. If you are a veteran, medications, doctors’ visits, rehabilitation therapy, and durable medical equipment are free at your local VA hospital. And if you’re fortunate to live near a school that has rehabilitation programs, you can have access at no cost to students who are learning clinical skills. Finally, you can volunteer for clinical trials, many of which have a rehabilitation component, at no cost.

It’s also a good idea to understand the purpose of each drug prescribed for you. Talk to your physiatrist and your primary care physician about which drugs you can reduce or eliminate. After living with my injury for more than ten years, I’ve managed to switch to generic drugs almost exclusively and have eliminated many others. The savings have been significant.

Continuous Rehabilitation Can Lead to Regaining More Functional Abilities

Rehabilitation is a long-term goal. I schedule and devote a significant amount of time to rehab activities each week—even all these years after my injury—and I continue to improve my functional abilities because of it. I may be unusual in the extent of my recovery, but I believe that everyone can regain function by working continuously on their rehabilitation.

I believe that my determination and organization have helped me get to where I am today. But I also have my down days, when I am so painfully aware of my limitations. I’ve emerged enough times from these significant disability periods to know that there is light at the end of the tunnel. So, it’s important to stay resilient. I don’t expect you to follow my schedule; I just want you to set your own goals, schedule therapy, and stick to it. Once you commit to a schedule, you are on your way to a better quality of life. Yes, it’s going to take time and effort, but regaining function is worth it.

True Grit

Rehabilitation is hard. There’s no way to sugarcoat it. And there’s no way to avoid it either. A quote attributed to Winston Churchill states, “When you’re going through hell, keep going.” That thought epitomizes my approach to rehab. Yes, some of it is hell. But I know from experience that with grit, determination, and resilience, you’ll keep going, too.

Resilience comes from within. When you overcome challenges and learn that you can change yourself and your environment to solve problems, you’ve tapped into your innate resilience. It’s more than confidence; it’s conquering your fear and self-doubt. When you face these difficult moments, reach down deep and use the power of your mind, and you will prevail.

Of course, your journey will be aided by the people around you, friends and family who believe in you. Don’t be reluctant to accept their love and support. It’s a lifeline for you and deeply gratifying for them. One of my best sources of uplifting encouragement is a group of four paraplegics; these buddies of mine have all been in wheelchairs for more than twenty-five years—more than twice as long as I have. We call ourselves the Push Men, and we meet for dinner every few months. Each person’s wisdom and understanding, gained by many years of dealing with disability, makes us a powerful source of support and inspiration for each other.

I believe in you. I hope this book empowers you to do the same. And, now that you’re equipped to make the most of your rehabilitation, you can begin to focus on living your healthiest lifestyle.

 

Everything You Need to Know

Approach rehabilitation with optimism and the knowledge that progress may be slower than expected. Use the following five steps to help you as you work to get your brain and body back:

• Determine your personal goals.

• Prepare yourself mentally.

• Make a schedule and put it in writing.

• Practice, practice, and practice.

• Establish how to pay for your rehabilitative services.

Along the way, be open to accepting all the help, love, and support offered to you.