www.thetinman.org Copyright © All rights reserved.
It is important to stay as active as possible as long as possible. Even simple exercises can keep the blood pumping and prevent contractures and muscle atrophy. Lack of exercise can cause fatigue and leads to sluggish metabolism.
Should stiff-person patients undertake an exercise program? Different sources provide different answers.
1. “Physical therapy may worsen symptoms of SPS during certain phases of the disease; therefore careful use of physical therapy, including passive range-of-motion is advised.”
2. “Stiffness and spasms interfere with the ability of these patients to fully mobilize affected joints, and they are at risk of developing further complications. Physical therapy may have a role in the management of this disease, as these patients need to be taught how to properly stretch and maintain joint mobility as a lifelong commitment. Most patients with SPS respond to medications, including GABA-enhancing drugs and antispasticity drugs, but additional forms of treatment are needed. Several authors have recommended against prescribing physical therapy to treat SPS because light touch or passive motion can exacerbate spasms. The usefulness of other forms of treatment, such as ultrasound, relaxation techniques, and hydrotherapy, has received conflicting reports. Although the use of electrical stimulation in the management of SPS has not been studied, impulses from EMG studies have been known to cause muscle spasms. Gentle flexion exercises were helpful in reducing lumbar hyperlordosis. They also found the application of stretching to the Achilles and hamstring tendons helped prevent contractures. Later research has shown how stretching and postural exercises can reduce excessive lumbar lordosis and pain. Spada and Spada advocated pelvic tilts, knee-to-chest stretches, and isometric abdominal exercises to help mobilize the trunk. Gallien et al found benefits from physical therapy were sustained a year later by following a home exercise program. Other research has shown gait training and assessment for an appropriate assistive device may help with functional mobility and fall prevention.”
Hegyi CA. Physical therapist management of stiff person syndrome in a 24-year-old woman. Phys Ther. 2011 Sep;91(9):1403-11. doi: 10.2522/ptj.20100303. Epub 2011 Jul 7.
3. “Physical therapists working with patients with SPS have challenges related to the paucity of information in the literature. The chronic, progressive, and variable nature of SPS indicates the need for life-long management, with the inclusion of an exercise program that can be adjusted accordingly, given the frequently changing symptoms experienced by the patient. As is shown with this case, it appears that physical therapy can improve function and some of the impairments associated with SPS.”
Potter K. Physical therapy during in-patient rehabilitation for a patient with Stiff-Person Syndrome. J Neurol Phys Ther. 2006 Mar;30(1):28-38. Link to article
4. “Initial assessments were range of motion, muscle strength, pain, balance, coordination, ambulation, and function. She got pain in shoulders; visual analogue scale (VAS) was 5. Muscle strength was affected. She had sitting balance, however could not stand up and walk. Her Functional Mobility Profile (FMP) score was 35/63. She received physiotherapy for 14 sessions. It included mainly balance, coordination, posture, strengthening, stretching exercises, and repetitive task training. After gaining standing balance, walking exercises were applied. Her coordination and muscle strength was increased. Her pain disappeared (VAS-0). Her static and dynamic balance improved dramatically and she started to walk with a walker at the 9th session. Her walking speed, distance and independence improved. The last FMP score was 49/63 and she could walk 20 meters with a walker without rest.”
Kahraman T, Balcı B, Şengün IS. Inpatient physiotherapy management for stiff person syndrome. School of Physical Therapy and Rehabilitation,. 2Department of Neurology, Dokuz Eylül University, Izmir, Turkey.
Exercise is helpful, but you should not embark on exercise programs that require maximum output and produce weakness. Exercise should be done in a way that stops short of muscle fatigue, and this point will vary from person to person depending on age, overall fitness level, symptoms, and other factors.
Every patient must have a thorough understanding of their unique SPS symptoms (stiff trunk, stiff limb, stiff neck) and must not engage in exercise involving the symptomatic areas without being cleared by a physician.
SPS is chronic, involuntary muscle activity. Brain signals go awry, sending overdrive messages or blocking the expand, release, rest transmissions. The pain, spasms, and stiffness of stiff-person syndrome can make it difficult to work out, but there are things you can still do.
Music relaxes your body, promotes healing, reduces chronic pain, increases mobility and coordination, lifts depression, and enhances awareness and concentration. Move to music. No one is watching, have fun. If necessary, you can hold onto a chair to avoid falling. Singing can also help with chest expansion and lifts your mood.
Laughter is good medicine. Listening to routines from your favorite comedians or comic movies can lighten your day. Laughing utilizes your chest and abdominal muscles and improves your breathing.
If you find it hard to make yourself follow a workout, try doing it while watching your favorite shows, listening to your favorite music, or encourage a friend or family member to join you.
Perfectly healthy people lose up to 10% of their aerobic capacity by the time they reach forty. Muscle mass decreases as will endurance and strength.The ability of your muscle tissues to heal diminishes. The decline in capacity continues to diminish between ages 50 and 70. With the addition of stiff person syndrome, muscle atrophy and weakness is compounded by the disease and over-active muscles.
When muscles are hyperactive, they inhibit their counterpart on the other side (reciprocal inhibition). For instance, a patient with an involuntary rotation of the head to the right (right spasmodic torticollis) will have a large, hyperactive left sternocleidomastoid muscle and a thin right sternocleidomastoid muscle.
The postural issues and muscle imbalances caused by SPS make you more vulnerable to osteoarthritis and tendonitis. Mild exercise can really help limit these problems. Balance can be quite a challenge. Walking around without stumbling when one foot insists on pointing the toes or while one side of the neck keeps the head turned in one direction is a challenge. With so many muscles misfiring, the body can shift off center. The focus of strengthening is on both upright and lateral postural alignment.
It’s important that you work on all the systems that keep your body working well. Your heart and circulation require aerobic exercise to stay healthy. Some form of aerobic exercise at least three times a week for thirty to forty minutes is ideal if at all possible.
At the very least you can walk around your house or go up and down the stairs holding onto the railings, slowly and carefully.
It is important to increase and preserve range of motion and mobility needed for function. Strengthen weakened muscles that may be under-utilized in the presence of stiff-person movements. Develop awareness of posture and maintain optimal body posture and balance.
Strengthening with light weight training or exercises that use your body weight as resistance, such as yoga and stretching, will improve strength and decrease stiffness. Heavy weight lifting is not advisable.
Exercises you can do in bed:
Chairs with firm, high backs are ideal. As much as possible, the feet should be flat on the ground with thighs parallel to the floor. The back should be relatively straight. Soft, sunken chairs and sofas do not foster proper alignment and may affect the position of the head and neck.
Exercises you can do in a chair:
Proper posture while relaxing and/or sleeping is also important. Sleeping with only one medium-sized pillow under the head rather than two large pillows may improve neck alignment. A pillow placed between the knees while resting on one's side will help maintain alignment of the hips and back.
Your neck is a major intersection for information going to your brain and vice versa. There are reflexes associated with your neck that will bring your head into a normal upright position to maintain vision straight ahead (optical righting reflex) and bring your body into a normal position in space and relation to the ground (labyrinthine or righting reflexes). These reflexes tie into your neck muscles to change your head and neck positions.
Body position will also affect your SPS. Lying on your back (supine) promotes flexion for your whole body. Lying on your stomach (prone) facilitates extension.
When you bounce, the brain increases the tone in the neck muscles to help support your head against gravity. When you lift weights in an upright position, as your shoulders fatigue, you will recruit the muscles in your neck to help you which may increase the tightness in your neck. You can overcome this with smooth rhythmic activities like pilates, yoga, tai chi, and chair exercises.
Muscles that are held in a consistently short position will start to lose muscle fibers and this could lead to fibrosis.
Stretching should “stretch” not hurt. Move carefully and smoothly in and out of stretched positions. Stretching aggressively and or bouncing will increase your tightness, not loosen you up. Modify positions so that all of your body feels good when you stretch.
High-top sneakers may help maintain the alignment of the foot and ankle and therefore the knee and hip as well. A supportive pair of shoes should be made of firm material, such as leather, have a definite arch to the sole, and cover most of the foot.
When muscles are not in spasm, focused lengthening of those areas that have been in contraction can aid with relaxation and pain management. This also helps as lengthening and loosening these muscles that have shortened better enables the body to regain postural alignment.
Pick a time of day when your medicines are working their best. You are usually at your best in the morning, after your meds kick in, but before you have had to fight gravity for the day. Listen to your body. Start slow. Always heed your body's "NO" at its first hint.
Rest periods during a workout or physical activity are valuable. Frequent 5- to 10-minute breaks promote muscle relaxation and proper posture. Lying down or sitting in a high-backed chair with arms supported during a break may help the muscles thoroughly relax.
Occupational therapists are licensed healthcare professionals. They can design an exercise program to meet your particular needs. They evaluate and treat problems of mobility and walking, joint or muscle pain that interferes with activities of daily living. It is important to find an occupational therapist with experience in treating movement disorders such as dystonias or Parkinson's.