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ALS Multidisciplinary Clinic
Clinic: 617-724-3914 Neurology Access Center: 1-855-MGH-NEUR (644-6387)
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ALS Research at Mass General
What is a physical therapist?
A physical therapist (PT) is a healthcare professional who is trained to evaluate and treat problems related to movement and function. In our clinic, the physical therapists have experience working with persons with ALS and other neuromuscular diseases, and are familiar with many of the specific issues they may have. These issues may include questions about activity and exercise, difficulty walking or with transfers, balance problems, difficulty with daily functional activities (eating, dressing, bathing, etc), weakness or stiffness (spasticity) in muscles and tightness or pain in joints. Our physical therapists will meet with you during your multidisciplinary clinic visit to discuss any questions you have surrounding exercise and movement, including stretching and general exercise guidelines, fall prevention, balance, and functional activities. They can also assess the need for different types of equipment that may help you with mobility and/or equipment for your home. The ALS clinic physical therapist can also help identify the need for local PT and/or Occupational Therapy (OT) and help you find a local PT or OT. The physical therapist visit in the ALS Clinic is a consultation and is not meant to replace any ongoing physical therapy treatment, either as an outpatient or in your home. Rather, the physical therapist in the ALS clinic is available as a resource to you, and to your home or outpatient PT, to help you manage changes in your function on a long-term basis. If you are seeing a PT or OT (outpatient or home visits) locally, our physical therapists are available to talk with your local therapist and act as a resource for them regarding your plan of care.
When should I see a Physical Therapist?
If you have questions regarding exercise guidelines, stretching, or other activity recommendations, it may be helpful for you to meet with a physical therapist during your clinic visit to discuss these questions. If you are experiencing difficulty with balance, walking, endurance, transfers, or functional activities, it is likely a good time to seek the input of a physical therapist, either locally or at your next clinic visit. If you have fallen or stumble sometimes, seeing a physical therapist for consultation may help to identify the cause of these incidents, and suggest a plan going forward to minimize your risk of falls. This plan may include ongoing PT treatment (locally, near your home, or in your home), a device (such as an ankle brace or other assist) to help you clear your feet when walking, or other techniques or treatment options. If you fall in-between clinic visits, please DO NOT WAIT until the next clinic visit to tell your neurologist and/or the ALS clinic physical therapist about your fall. We recommend that you call us to let us know right away, so we can help you problem-solve and identify local resources, such as PT and OT, to help maximize your function and decrease your risk of further falls.Exercise GuidelinesWhy is exercise important for the patient with Neuromuscular Disease?A common perception regarding patients with neuromuscular disease is that since the muscles won't get stronger, it will not help to exercise, and recommendations regarding exercise for those with neuromuscular disease have long been controversial. Some experts believe it’s impossible to overdo it, while others believe exercising to exhaustion can "burn out" remaining motor neurons before their time. Some physical therapy experts have raised questions about whether it’s wise to put too much demand on a gradually decreasing number of motor neurons, which have to do the work that would normally be done by many more such cells.
In the past several years, some small research studies have shown that moderate exercise, both aerobic and light strengthening, may be beneficial. More research is needed (and is currently planned) to determine how much exercise is enough and how much is “too much.” Based on what we currently know, it seems sensible to exercise with discretion and stop before reaching the point of exhaustion. Researchers are also investigating what type of exercise is safest and most tolerated in patients with ALS. Learn more about this clinical trial.We feel that appropriate exercise is very beneficial for patients with neuromuscular disease, for the following reasons:• To prevent joint stiffness and maintain joint mobility allowing for easier performance with self care tasks. • To keep muscle tissue that is not affected by neuromuscular disease healthy and strong. Healthy muscle tissue can better support the weak muscles.• To maintain cardiopulmonary fitness as much as possible• To possibly delay muscle atrophy (decrease in muscle size) because of disease. Beneficial types of exercise (within individual activity tolerance):• Active Movement• Low impact activity, such as stationary bicycle, pool exercises, walking, movement• Light resistance if using weights• Assisted Movement (movement in which another person assists)Dos and Don’ts in Exercise for people with Neuromuscular Disease:• Do take short rest periods throughout the day and space activities over several hours• Do save energy for necessary daily activities.• Don’t perform exercise to the point of severe fatigue. • Don’t “feel the burn” or push yourself until you are sore after exercise or the next dayNote: You should not feel pain, sore muscles or exhaustion from any exercise performed the day before. If you do, you are exercising too hard. An exercise program should not interfere with ability to complete daily tasks. A good rule of thumb is if you rest for 30 minutes to 1 hour after exercise, you should feel like you could do the exercise again (back to baseline level of energy). EquipmentAt some point in the disease process, most people with ALS find that various types of assistive devices, “gadgets” or mobility equipment may be of use to them. “Equipment,” in this broad sense, encompasses everything from a wide-handled knife to a key turner to a walker to a completely motorized wheelchair. What equipment you will find useful, and at what point you will need it, is very individualized. Our physical therapists are here to help you figure out if there is equipment that can help you with the things you are having difficulty with, from balance and walking to tasks related to your daily activities.Assistive Devices, or “mobility equipment,” includes devices to help with walking and getting around, stairs, transfers, and other movement. Many people with ALS develop weakness in their ankles, and an Ankle-Foot Orthosis (AFO or ankle brace) may be helpful to improve balance, gait and safety. For those with balance difficulties, often a cane or walker helps to give them a little support and can greatly improve balance, walking ability, and safety. If walking is very difficult, a wheelchair can allow you to continue to do the things you enjoy without danger of falling or extreme fatigue from long-distance walking. A folding “transport” wheelchair may be a good option for you if you can walk short distances but have difficulty with longer treks. A custom manual or power wheelchair is appropriate if walking is becoming too difficult and you need another way to get around. It’s important, when obtaining a custom wheelchair, to be evaluated by an experienced physical therapist who is a specialist in wheelchairs. We can help you find a wheelchair clinic or specialist PT in your area.There are a variety of devices that may help with daily activities as well. Depending on what you are having difficulty doing, our physical therapists can help you find a device that can help make activities easier, including tying shoes (elastic shoelaces or different types of shoes), turning keys (key turners), getting dressed (shoe horns, sock aides, button and zipper aides), and writing (pens, keyboards, etc).Changes in function or balanceChanges in physical function or balance are most often a part of the ALS disease process. Although we can not change the disease itself, our physical therapists can work with you to maximize your balance and safety, minimize your risk of falls, and help with different aspects of daily function. We can also work with your home or outpatient Physical or Occupational Therapist regarding treatment plans.
Learn more about ways to prevent falls
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