Tremor THE BASIC FACTS

MULTIPLE SCLEROSIS

JUDY DIAGNOSED IN 1982

Some people with MS experience tremor, tremors are activated when a person reaches an involuntary rhythmic shaking movement for something. When tremor is severe, it can of the muscles. The most common type of prevent a person from eating, writing, speaking tremor seen in people with MS is caused clearly, or walking. by loss of myelin on nerve fibers in the There is no cure for tremor, and it remains pathways that coordinate voluntary muscle one of the most frustrating MS symptoms. movement and balance. Options for management include physical Tremor can affect the limbs, head, body, and occupational therapy techniques, or the muscles needed for speech or sexual medications, stress management, neuro- functioning. Some tremors are slight and surgery, and electrode implants. Some of don’t interfere with daily living while other these options will work for one individual; tremors can significantly affect important others will not. Coping with tremor requires basic activities. Gross tremor is characterized patience, good communication with by wide back and forth motions, usually healthcare professionals, and some creative of the arms or legs. Intention or action problem-solving.

Tremor | 1 Don Denton, of Lubbock, Texas, has been Some people find it helpful to hold their dealing with intention tremors due to his arms close to the body or to prop an MS for over 20 years. He’s worked as a peer elbow against the chest in order to gain counselor with his chapter of the Society. more control over forearm movements. When he talks to people who have problems Weights fastened to the wrists or ankles with MS tremor, he tells them frankly that with Velcro strips can stabilize an affected there is no easy answer. However, he also limb. Weighted boots are also used. Putting reassures them that they may be able to reduce weights on canes or walkers, or using their problems. Don has found some relief with weighted spoons or forks can make these medication. He has also learned strategies tools easier to use when tremor is active. that allow him to perform daily tasks better, The use of weighted devices has to be and he plans ahead so that tremor-related balanced against the added fatigue they problems don’t take him by surprise. For might cause. Therapists commonly offer Don, tremor has become just one more samples for a try-out. piece of this challenging chronic disease. Adaptive equipment, such as wrist rests that facilitate writing or typing, and plates and cups with lips to minimize food spills, are Occupational and also helpful to some people. physical therapy Physical or occupational therapists may be able to reduce the effects of tremor by techniques teaching specific positions for some activities or by balance and coordination exercises. An occupational therapist or physical therapist These might include repeating a series of is the recommended source for both practical movements related to an activity like eating, strategies and adaptive aids that can reduce for example, until those muscles “learn” a the negative impact of tremor on daily life. pattern sufficiently well to override disruptions Your doctor should be able to refer you to a of the nervous system. Rehab therapists may professional with MS experience — or, call also teach exercises that focus on stimulating the National MS Society. the balance centers of the brain. Computers Some tremor can be controlled through the can provide biofeedback that teaches people use of braces. A rigid brace can support an to recognize balance problems in time to affected limb while a person performs a specific compensate for them. activity. Afterwards, the brace can be removed. In some cases, however, bracing may actually increase other problems such as spasticity. Consult a rehabilitation specialist to explore this option.

Tremor | 2 (Inderal®) in pill form for someone who is Tremor and facing a particularly stressful event such as speech problems giving a speech or appearing in public.

If tremor affects the muscles necessary for speech, a person will want to consult a speech Medications for therapist. A speech therapist can show a person how to slow down or concentrate on phrasing the management so that speech is more intelligible. If this is not possible, a person with speech tremor may of tremor need to learn alternative communication skills. At present, there are no medications Electronic aids, communication charts, or specifically for tremor, but several computer-assisted alternative communication medications have been shown to have systems are available. However, tremor this secondary effects that can be more or severe is not common for people with MS. less helpful. Some people respond well to one medication; some benefit from a combination; some find no benefit. People with tremor will have to work patiently Stress management with their physicians in investigating which and tremor therapy might be useful to them. (The following list is adapted from People with MS-related tremor may find Managing the Symptoms of MS, 6th that the unwanted muscle movements are Edition, Randall T. Schapiro, MD, 2014, worse in stressful situations. As Dr. Robert Demos Medical Publishing Co., Inc.) R. Young, former professor of neurology at the University of Southern California, n Hydroxyzine (Atarax, Vistaril®) explains, “Stress, excitement, and anxiety all Antihistamine that can help minor tremor worsened by stress result in the body releasing adrenalin which produces a temporary aroused condition. n Clonazepam (Klonopin®) All of us experience this at some time. Stage Anti-anxiety agent with sedative effect fright is one example.” For people with MS n Propranolol (Inderal®) tremor, this temporary condition can make Beta-blocker with modest relief for the existing tremor worse. some tremor Stress management techniques can be an essential tool for such situations. Dr. Young would also prescribe a beta-adrenergic blocking agent such as propranolol

Tremor | 3 n Buspirone (Buspar®) Anti-anxiety agent with some antitremor effect Thalamotomy n Ondansetron (Zofran®) Anti-nausea medication with anti-tremor and deep brain effect, but very expensive stimulation n Primidone (Mysoline®) Anti-epileptic medication with some anti- Tremor in MS occurs when there is damage tremor effect in low doses; sedating effect to nerve fibers in a section of the brain n Acetazolamide (Diamox) called the thalamus. Tremor is sometimes Diuretic; some help for postural tremor treated with a neuro-surgical technique n OnabotulinumtoxinA (Botox®) called thalamotomy which involves Neurotoxin that temporarily paralyzes targeted permanently destroying targeted nerve muscles; may be effective for tremor in the arms tissue in the thalamus. and hands There has been some success reported in Other medications that may be tried the treatment of MS tremor from using include gabapentin (Neurontin®), isoniazid electrode stimulation of areas in the thalamus. (Laniazid, in the US; Isotamine in Canada); This is called deep brain stimulation or DBS. and trihexyphenidyl (Artane). Some gross A tiny electrode is implanted in a targeted area tremor can also be treated with baclofen, of the thalamus during open-skull surgery. which is primarily an agent for treating The electrode is connected to a wire lead spasticity. that is inserted under the skin of the neck. It connects to a control device inserted under The question of whether marijuana — the skin in the chest area. This device is produced from the flowering top of the programmed to send impulses to the electrode hemp plant, cannabis sativa — should in the brain. These impulses interfere with be used for symptom management in the nerve signals that are causing muscles to MS is a complex one. More and better make involuntary tremor movements. therapies are needed for tremor; still, there are uncertainties about the benefits of DBS was originally developed for the marijuana relative to its side effects. treatment of tremor due to Parkinson’s disease. It is still a new therapy and is The National MS Society recommends that not yet FDA-approved for MS tremor. people diagnosed with a relapsing form of The Center for Neurological Restoration MS begin treatment with one of the disease at The Cleveland Clinic Foundation modifying therapies. These medications has performed approximately 40 DBS may not have any direct effect on existing operations for people with MS. The Center symptoms, including tremor, but they is enthusiastic about this new neurosurgical may slow down the progress of the disease technology but cautions people to have and help avoid additional damage to central reasonable expectations. Tremor in MS is nervous system tissues.

Tremor | 4 often associated with poor coordination In 2008, Kool-Tucker began to experience (also called ataxia) and loss of the ability essential tremors in her left arm. She had to judge distances (dysmetria). DBS may another DBS in 2009 to address this problem reduce tremor, but it doesn’t abolish these and then had additional surgery to implant disabling symptoms. a new implantable pulse generator. Unlike persons with Parkinson’s who always receive Like any surgery, the DBS procedure has Bilateral DBS, persons with MS generally risks — a 2–3% risk of serious complications only get Unilateral DBS. Therefore, Kool- due to the surgery itself. Then, over time, Tucker had to have the second surgery. DBS recipients tend to build up tolerance to a particular electronic signal. This means that they must frequently return to their doctor’s office to have the impulse generator Coping over reset, either to a higher or lower level. This is done using non-invasive radio signals. the long term Andrea Kool-Tucker of Columbus, OH It can be maddening to feel that your own made the assessment and decided that body is no longer in your control. Many the benefits would outweigh the risk of people feel painfully embarrassed when complications or the bother of frequent office other people witness their tremor. Simple visits. She was often unable to feed herself changes — like grasping a glass with two or to write due to the intention tremors hands instead of one — can be a big help. in her arms. Her doctors had prescribed Don Denton handles embarrassment by medications, but none had provided relief being upfront with people about all his for her. The fact that the DBS procedure MS symptoms, including tremor. When is reversible helped her decide to try it. In ordering coffee at a restaurant, he’ll tell 2000, Kool-Tucker had the operation. Since the server, “I can’t always control my hand then, she has been able to feed herself and shaking, so pour me half a cup — otherwise, write again. At first, it was necessary to get I’m going to spill some.” Denton also knows her impulse generator reset every few months, that his tremor can increase with fatigue, so but now this occurs less frequently. She does he’ll try to plan certain activities for early in not find her implanted device noticeable the day. or intrusive, but she has noticed that her If tremor is having an impact on your social problems with gait seem to increase when life or making you wary about going out in the device is turned on, so she simply turns public, a professional therapist or counselor it off when she needs to walk. may help you arrive at solutions more acceptable than simply staying at home.

Tremor | 5 Keep trying For additional

It’s hard to predict which strategies will information work for an individual’s tremor. Tremor can be discussed with a physical or occupational Educational videos therapist, or other healthcare provider. If n nationalMSsociety.org/videos balance exercises fail, try biofeedback. If In the Symptom Management category, one medication has no effect, or the side look for feature presentation called effects are too troublesome, talk to your Managing Your Symptoms in MS: doctor about other options. Celebrate every Tremors, Seizures, and Loss of Balance. moment of progress — whether it’s learning the exact angle needed to sign your name Society publications: clearly or reaping benefits from Swiss ball n Managing MS through Rehabilitation balance exercises. n Taming Stress in Multiple Sclerosis In dealing with this frustrating symptom, For more information on deep brain make use of all the available resources. These stimulation, go to clevelandclinic.org and include a responsive healthcare team — search the site for deep brain stimulation. therapists, nurses, and counselors as well as your physician, your family and friends, By Lorna Smedman, PhD. and the National MS Society. Educate yourself and those closest to you about Botox® is a registered trademark of Allergan, Inc. tremor and all the possible therapies for it, Buspar is a registered trademark of Bristol-Myer including creative coping. And try to keep Squibb, Co. tremor in perspective. Inderal is a registered trademark of Wyeth Corp. Klonopin is a registered trademark of Hoffman Medications and neurosurgical technologies LaRoche Inc., Corp. now offer somewhat better outcomes for Mysoline is a registered trademark of Valeant long-term management of tremor in MS. Pharmaceuticals New developments are expected from Neurontin is a registered trademark of Parke Davis research. There is hope for the future. But Division of Pfizer until improvements come to fruition, Vistaril is a registered trademark of Pfizer, Inc. people who live with tremor will continue Zofran is a registered trademark of Glaxo Group Ltd. to piece together the strategies that best address their own individual situations.

Tremor | 6 * The National Multiple Sclerosis Society is proud to be a source of information about multiple sclerosis. Our comments are based on professional advice, published experience and expert opinion, but do not represent individual therapeutic recommendation or prescription. For specific information and advice, consult your personal physician.

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