Therapy and treatments

Reviewed by John K. Fink, M.D., SPF Medical Advisor

Please note: The information in this section is not intended to be taken as replacement for medical advice. It is provided for informational purposes. Individuals should consult with a qualified health-care practitioner.

PLS and HSP disorders affect individual people in different ways, and as a result, treatment programs will vary. Although there is no way to stop, slow or reverse the progressive disability of these disorders, there are therapies that can help enhance function and comfort and promote general physical and emotional well-being.

Your neurologist or physiatrist will develop an individualized program, often with consultation from other professionals. The treatment team may include an orthopedist, physical therapist, occupational therapist, speech and language pathologist, social worker, or psychologist. Remember that you are an important member of the team, too.

Index:

Physical therapy and exercise
Drug treatment - Muscle spasticity
Drug treatment - Bladder/bowel

Drug treatment - Clinical depression
Occupational therapy
Assistive devices

Orthotics

Speech therapy
Supportive counseling
Diet and alternative medicine

Clinical trial drugs

Physical therapy and exercise

Regular physical therapy and exercise are considered the most important components of a treatment program. Experts recommend maintaining a physical therapy exercise regimen of at least several times each week (with stretching done daily). Please consult with your doctor to determine the best program for you.

Physical Therapy

Physical Therapy seeks to restore or maintain the ability to move. For individuals with HSP or PLS, therapies generally focus on reducing muscle tone, maintaining or improving range of motion and mobility, increasing strength and coordination, and improving comfort. Programs may also include treatments designed to prevent complications such as frozen joints, contractures (muscles that won’t stretch out) or bedsores.

Physical Therapists will assess joint motion, muscle strength and endurance, posture, pain, heart and lung function and performance of daily living activities to develop an individualized program. Therapies may include stretching, strengthening and aerobic exercises (see Exercise). They may also include gait training and appropriate use of assistive devices, such as canes, braces, and walkers (see Assistive Devices); balance and coordination activities; transfer training — such as how to get from bed to wheelchair or from wheelchair to car; and training in how to fall to minimize possible damage. They can also include techniques such as massage, ultrasound, electrical stimulation or whirlpool.

Sessions with a physical therapist generally last just a few months or less. Emphasis is usually on the establishment of a home program with periodic follow-up sessions.

Exercise

There are many books, videos and audiotapes for individuals with special needs, but always work with your health care provider to establish a program that is right for you. A great resource list is offered by Western University’s Center for Disability Issues and the Health Care Professions.

A balanced exercise program includes three types of exercise:

Stretching/Flexibility Exercises: slow, sustained lengthening of the muscle

Many experts consider stretching the most important exercise you can do. That’s because stretching improves flexibility - the ability to move the parts of your body through their full range of motion. Stretching can also reduce muscle spasticity and cramps, and may also reduce problems such as tendonitis and bursitis.

To be effective, stretching routines must be done regularly, usually once or twice a day. Stretch as far as you can and hold the stretch for 10 seconds and then ease back. Each stretch should be performed slowly, with no sudden jerking or bouncing. Stretching should also be done before and after other exercises to prevent muscle strain and soreness and to help avoid injuries.

Aerobic Exercises: steady exercise using large muscle groups

Aerobic exercise strengthens your heart and lungs and improves your body's ability to use oxygen. It also reduces fatigue, increases energy levels and helps you sleep better, control your weight, and lift your spirits.

It is generally recommended to gradually work up to three or four sessions per week, each lasting 15 to 60 minutes. Include a 5-minute warm-up (including stretching) before the activity and 5 to 10 minutes of a cool down (stretching and slower activity) afterwards. Walking, stationary bicycling, water exercises and chair exercises are excellent choices.

• Walking: Experts recommend walking according to your ability, comfort and safety. Even short, slow walks can provide benefit.

• Aquatic (water) exercises: Aquatic exercises and swimming provide optimal exercise conditions. Water eliminates the effects of gravity, allowing weakened limbs to attain a greater range of motion. Water also helps support the body so there is less stress on hips, knees, and spine.

• Exercises in the water can help increase muscle power and endurance and help mobilize joints and muscles. They also help to relax muscles and improve coordination. Warm water (between 83 and 90 degrees F) can be especially good for stiff, sore joints. Exercises can be done while standing in shoulder-height water or while sitting in shallow water. In deeper water, an inflatable tube, floatation vest or belt can be used for flotation.

• Some of the local chapters of organizations such as the Muscular Dystrophy Association, United Cerebral Palsy, Arthritis Foundation, YMCA and National Multiple Sclerosis Society sponsor aquatics programs.

• Stationary bicycling: Stationary bicycling is a great way to improve fitness without putting stress on hips, knees, and feet. It can be done in any weather and balance is generally not an issue. Add resistance only as you are comfortable, and only after warming up.

• Chair exercises: If mobility and balance are big issues, consider chair exercises. They can provide a great workout and easily incorporate strengthening and stretching exercises.

Strengthening Exercises - repeated muscle contractions until the muscle becomes tired

Strengthening exercises help increase muscle tone and improve the quality of muscles. This enhances mobility and provides energy and a positive sense of well-being.

Strong hip and leg muscles are needed to lift the legs to walk and strong arm muscles are needed to carry out daily functions. Strong abdominal and back muscles help maintain correct posture and can counter pain resulting from poor gait, poor posture or the use of mobility aids.

Knowing which muscles need to be strengthened and how to perform the exercise without over-stressing the joints is important. A physical therapist, occupational therapist, and/or doctor can provide appropriate recommendations.

Tips to get started and keep you motivated in your physical therapy exercise program

• Choose activities you enjoy

• Make exercise part of a daily routine

• Exercise with a group

• Keep a written record

• Exercise to music

• Set realistic goals

• Select loose, comfortable clothes

• Wear properly fitting shoes

Editor's Note:  You can read an article submitted by one of our community members (an Exercise Physiologist) at Patient Forum - Exercise and one regarding stretching at Patient Forum - Stretching.

Recreation can provide exercise as well as enjoyment. There are many organizations that provide programs for people with special needs and companies that manufacture specialized equipment. An extensive online source of information and resources is provided by The National Center on Physical Ability and Disability. The site also includes a series of Fact Sheets that provide a quick look at a variety of adaptive recreation, leisure, fitness, and sports activities.

Here are a few helpful links:

Organizations:

Disabled Sports USA

Wheelchair Basketball Federation
Canadian Wheelchair Basketball Federation
Wheelchair Football
Bowling
Fishing
Water sports
U.S. Paralympics
Tennis

Adaptive Skiing and Recreation/Northeast U.S.

Wilderness Inquiry Outdoor Adventures 

Outdoor Buddies (Colorado)

Adaptive Sports Center

Adaptive Adventures Outdoor sports and recreation

Adaptive exercise and recreation equipment:

Special cycles

Three wheel bike
Special exercisers
Pool lifts
Skiing

Mobility Products

Fishing

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Drug treatment - Muscle spasticity

The most commonly used drugs to help ease spasticity include oral and intrathecal Baclofen and Tizanidine, Diazepam and Clonazepam, and Dantrolene. Individuals report various levels of improvement in spasticity levels of leg, arm, and bulbar muscles. In extreme cases of spasticity, some individuals benefit by botulinum toxin, which is injected directly into the muscle. This has also shown helpfulness in leg, arm, and bulbar (speech/swallowing) muscles.

Possible side effects for these drugs include drowsiness, dizziness, weakness, confusion and upset stomach. For detailed information regarding drugs, contraindications and side effects, please visit Medline Plus Health Information and consult your doctor or pharmacist. Note: In case of emergency/overdose the local poison control center can be reached at 1-800-222-1212.

• Baclofen - the most commonly used medication to help relax muscles or reduce tone.
  Brand name: Lioresal. Outside the United States: Alpha-Baclofen, Baclon, Baclosal, Baclospas, Baklofen, Clofen, Lebic, Mulax, Pacifen, Spinax
  
  To be effective, the dose must be large enough to cross the blood/brain barrier and reach the spinal cord (The blood/brain barrier is the body’s way of keeping chemicals from getting to the brain and spinal cord). If the high dosage results in too much sedation, the intrathecal Baclofen pump can be considered.
  
  The Baclofen pump is surgically implanted in the abdomen and delivers small, continuous doses of medication directly to the spinal canal. This can result in better performance with minimal side effects. Surgery is required to implant the pump under the skin of the abdomen and a catheter connects it to the spine. The pump can be programmed to release a specific amount of medicine at select times, which can be adjusted without surgery. The pump needs to be refilled every one to three months. See Medtronic.
   

• Tizanidine - a short acting drug useful for treating nocturnal spasms and for intermittent management of spasticity.

  Brand name: Zanaflex. Outside the United States: Sirdalud, Sirdalud MR, Sirdalud Retard, Ternelax, Ternelin

   

• Diazepam and Clonazepam - sedatives that slow the central nervous system, side effects are common.
  Brand names (Diazepam): Valium, Diastat
  Brand name (Clonazepam): Klonopin
   

• Dantrolene sodium - works to reduce muscle contraction, may cause liver damage.

  Brand names: Dantrium, Dantrium IV

Other treatments used for spasticity

• Botulinum toxin - Chemodenervation by injections of botulinum toxin type A (BTX-A) directly into the muscle, lasts about six months
  Brand name: Botox (chemodenervation) Product site
   

• Gabapentin - widely used to treat seizures and neuropathic pain, may be useful in reducing spasticity.
  Brand name: Neurontin

   

• Fish oil and quinine
  Individuals have reported benefit from fish oil, which blocks activity of the sodium channels used to contract muscles and quinine. Quinine is found in tonic water.

Editor's Note: One of our community members maintains his Baclofen Pump Journal experience for us at Patient Forum - Pump. We also conducted a Baclofen Pump Survey on people with HSP and PLS. You can read those results here: Patient Forum - Pump Survey. Another member, a primary care physician with HSP, provides an article on pain management in Patient Forum - Pain.

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Drug treatment - Bladder/bowel

For detailed information regarding drugs, contraindications and side effects, please visit Medline Plus Health Information and consult your doctor or pharmacist. Note: In case of emergency/overdose the local poison control center can be reached at 1-800-222-1212.

Many individuals report increased urgency, frequency or difficulty voiding in urinary or bowel functions. There are number of drugs, techniques and devices that can help.

An excellent informational site is Controlling Bladder Problems. While this National Multiple Sclerosis Society site is geared to those with multiple sclerosis, it is very applicable to others with spastic bladder symptoms. It provides a lot of information and tips.

For detailed information regarding the drugs listed below, contraindications and side effects, please visit Medline Plus and consult your doctor or pharmacist.

• Oxybutynin chloride - reduces bladder contraction and the urge to void.
  Brand name: Ditropan and Ditropan XL Product site
   

• Tolterodine tartrate - reduces bladder contraction and the urge to void.
  Brand name: Detrol and Detrol LA Product site
   

• Hyoscyamine - used to control symptoms associated with disorders of the gastrointestinal (GI) tract and is also used in the treatment of bladder spasms.
  Brand names: Levbid, Anaspaz; Cystospaz; Cystospaz-M; Levsin; Neoquess
   

• Cymbalta - a soon-to-be-released antidepressant that was found to also calm urinary urgency.
  Brand name: duloxetine Eli Lilly

Other treatments for bladder dysfunction

• Medtronic InterStim - Medtronic is an electronic device that is implanted to stimulate the sacral nerves with a product called InterStim. This may be helpful in both overactive bladder and neurogenic bladder.
   

• Tricylic antidepressants - Tricylic antidepressants (see drugs for depression) amitriptyline and imitriptyline appear to help with bladder dysfunction.
   

• Stress incontinence - Stress incontinence is when the urine leaks when one coughs or sneezes, caused by the sphincter not staying tight enough. Over-the-counter Sudafed (decongestant) is reported to tighten the sphincter muscle the most, but can raise blood pressure. Antihistamines like Benadryl can also help tighten the muscle.
  
  Kegel exercises are often used to tone the pelvic muscles and retrain the bladder.
   

• Incontinence Products - A variety of protective, absorbent garments are available in drugstores or on the Internet. They are specifically tailored to fit men or women, and come in a variety of styles, depending on the severity of the incontinence.
  
  Other incontinence products include mattress covers, chair pads, odor elimination sprays, skin care products and swimming garments.

For bowels

Bowel regularity can be maintained by following guidelines that include drinking lots of fluids, including plenty of fiber in the diet, using stool softeners, and establishing a regular time for emptying the bowels.

As well as the prescription medication listed below, there are some over-the-counter bulking agents that can help with bowel problems, such as psyllium (brand names: Metmucil, Konsyl).

For detailed information regarding the drug, contraindications and side effects, please visit Medline Plus Health Information and consult your doctor or pharmacist.

• Dicyclomine - relieves spasms of the gastrointestinal tract (stomach and intestines) by blocking the actions of spasm-inducing chemicals in the body. It is used to treat functional bowel or irritable bowel syndrome (IBS).
  Brand name: Bemote; Bentyl; Di-Spaz

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Drug treatment - Clinical depression

For detailed information regarding drugs, contraindications and side effects, please visit Medline Plus Health Information and consult your doctor or pharmacist. Note: In case of emergency/overdose the local poison control center can be reached at 1-800-222-1212.

It is not uncommon for individuals with PLS or HSP to experience symptoms of depression and even to develop clinical depression. Studies indicate that more than 80% of people with clinical depression can be treated successfully with medications.

There are several types of antidepressants. They differ in their side effects and, to some extent, in their level of effectiveness. No one type of medication for depression has been shown to be more effective than any other. The main difference between the types of medication (marketing and cost aside) is in the limitation of side effects.

Medications must be taken regularly for as many as eight weeks before the full therapeutic effect occurs. If there is little or no change after five to six weeks, a different medication may be considered. Medication is taken for a minimum of several months and may last up to a year or more.

Antidepressant medicines work by altering the level of certain chemicals in the brain that are responsible for transferring messages between brain cells. The dosage varies, depending on the type of drug, the person's body chemistry, age and body weight. Dosages are generally started low and raised gradually until the desired effect is reached without troublesome side effects.

Antidepressants are divided into three classes:

• Selective Serotonin Reuptake Inhibitors (SSRI)
  SSRI antidepressant effects are due to their action on a neurotransmitter called serotonin.

  • Celexa (citaloprm HBr) and Lexapro
    Product site  Product site  

  • Effexor and Effexor-SR
    Product site

  • Luvox (fluvoxamine)
    There are many generics available

  • Paxil (paroxetine)
    Product site 

  • Prozac (fluoexetine) by Eli Lilly
    Product site (there are many generics available)

  • Zoloft (sertraline)
    Product site
     

• Tricyclic Antidepressants
  Though the tricyclics are as effective in treating depression as the newer antidepressants, their side effects are usually more unpleasant. They are generally used as a second- or third-line treatment. 
  
  Most of these medications affect two chemical neurotransmitters, norepinephrine and serotonin. There are many generics available:
   

  • Amitriptyline (Elavil)

  • Amoxapine (Asendin)

  • Clomipramine (Anafranil)

  • Anafranil (clomipramine)

  • Doxepin (Sinequan)

  • Imipramine (Tofranil)

  • Deseryl (trazodone)

  • Norpamin (desipramin)

  • Nortriptyline

   

• Monoamine Oxidase Inhibitors (MOI)
  MAOIs are effective for some people with major depression who do not respond to other antidepressants. They are also effective for the treatment of panic disorder and bipolar depression.
  
  MAOIs include phenelzine (Nardil), tranylcypromine (Parnate), and isocarboxazid (Marplan). Because substances in certain foods, beverages, and medications can cause dangerous interactions when combined with MAOIs, people on these agents must adhere to dietary restrictions. This has deterred many clinicians and patients from using these medications.
   

• Other antidepressants
   

  • Tetracyclic antidepressants
    These antidepressants stimulate norepinephrine and serotonin release. They also block two serotonin receptors that cause some of the side effects of SSRI's (sexual problems, others) and causes less symptoms than the tricyclics (dry eyes, constipation). Medications include Ludiomil (Maprotiline) and Remeron (mirtazapine). Two other antidepressants that affect norepinephrine and serotonin are venlafaxine (Effexor) and nefazodone (Serzone).
     

  • Bupropion (Wellbutrin, Wellbutrin SR)
    Treats depression by affecting dopamine and norepinephrine, which are believed to help regulate your mood. Wellbutrin has not been associated with weight gain or sexual dysfunction.

Other treatments for depression

Psychotherapy can be very helpful for people with severe or mild depression, and also in everyday coping with having a chronic illness. Please see Supportive counseling.

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Occupational therapy

Occupational Therapy is a rehabilitative health care profession focused on improving the development of the small muscles of the body, such as the hands, feet, face, fingers and toes. These muscles are used to accomplish everyday tasks such as mobility, washing, dressing, eating, cooking and grooming and other activities such as handwriting, driving, housekeeping, or job tasks. An occupational therapist (OT) is also the professional who can best advise how to modify a household to accommodate special needs.

To develop a plan, therapists assess an individual's level of managing daily living activities and then make specific recommendations. Recommendations may include:

• Methods or equipment to improve one's abilities to carry out specific activities, such as dressing aids, special grips for pens and pencils, etc.

• Mobility aids such as canes, walkers and wheelchairs (see Assistive devices)

• Correct wheelchair positioning and postural management techniques

• Housing adaptations such as modifications in doorways and countertops, grab rails, ramps, stair lifts, etc.

• Orthotics such as shoe inserts, splints or braces (see Orthotics)

• Specialized equipment for seating, bath aids, etc.

• Exercise for fingers, hands or arms, the use of strengthening devices, activities designed to improve coordination

There are a many sites dedicated to products, resources and information to enhance daily living that individuals can also pursue on their own. Please go to Patient Forum Recommended Links to see many sites that members of our community have recommended.

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Assistive devices

There are a variety of assistive devices that can improve gait, steady balance, provide extra support and stability, and avoid fatigue from overexertion.

Canes
Canes can support up to 25 percent of your weight. The standard cane has single shaft, with a curved or flat top. The quad cane is a one-armed cane with four legs. Quad canes offer varying amounts of support, depending on the width of the leg base. While this cane is more stable than standard canes for balance, it is hard to use in narrow places, like a stair step. A doctor or a physical therapist is helpful in selecting an appropriate cane and providing instructions on how to use it.

Editor's Note: One of our community members provided an article the process of adopting the use of a cane. See Patient Forum - cane.

Walker
A walker can support up to 50 percent of your weight. The standard walker consists of four adjustable legs and handgrips for each hand and is moved by picking it up and placing the legs flat on the ground one step at a time. The legs of the walker should be adjusted so that the handgrips are level with one's hip.

To use a walker, you need adequate upper-arm strength, a reasonable amount of standing balance, and the ability to walk in the appropriate sequence with the walker.

 

Walker with Wheels
A walker with front wheels and rear brakes (rollator) may be preferable for someone who has balance problems, fatigues quickly, or doesn't have enough upper-body strength to use a standard walker. This walker is moved by pushing it forward as the rear legs drag along the floor. It is stopped by pushing down on the back legs. It requires that the user have some degree of control to prevent the walker from rolling too far forward. It can be difficult to move on thick carpets.

Walker with a Seat
This walker can support up to 300 pounds and includes a strap to secure the person sitting on it. A walker with a seat has front wheels and rear brakes and works in the same manner as the walker above.

Wheelchairs
Wheelchairs come in a variety of sizes, designs, and materials. It is essential that a wheelchair fits properly, is comfortable, and meets one's general functioning needs. If it is not the appropriate type or fit, a wheelchair may impair rather than aid in mobility.

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Orthotics

Orthotics are special shoe inserts, splints or braces used to help relieve gait problems and foot problems. They can also help increase balance or remove pressure from sore spots.

There are a variety of over-the-counter orthotics, but it is wise to consult a physical therapist or occupational therapist for specific recommendations and to obtain custom-made devices for best benefit.

Keep in mind that choice of shoes can also make a difference in ease and comfort of walking. Styles with toes that curve up (running shoes) can help reduce tripping and toe wear. High-top shoes or boots can provide extra ankle support for a steadier gait. Sturdy soles, or repairing worn areas of soles, may also help.

Detailed information about all types of foot problems and orthotics can be found at the Podiatry Channel. Another good resource is the American Podiatry Medical Association.

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Speech therapy

Speech and swallowing difficulties, as well as drooling problems, occur when spasticity and weakness occurs in the bulbar (facial, jaw, throat and tongue) muscles.

Speech disorder (Dysarthria) can vary from mild to so severe that makes it difficult to speak and be understood. Problems include abnormally long pauses between words or individual syllables of words, slurring, or nasal speech, which sounds as if the person has a cold or nasal obstruction.

A Speech/Language Pathologist (SLP) can evaluate, determine how to maintain vocal control and help improve speech patterns, enunciation, breathing techniques and communication in general; as well as suggest compensatory skills to enhance communication. This is generally done through exercises to strengthen the jaw, lips and tongue to improve coordination during speech.

Working closely with a Speech/Language Pathologist, who is familiar with the latest trends in augmentative communication devices (computer voice activated devices) will benefit you. Medicare will cover partial or perhaps the full cost of augmentative devices, if recommended by a Speech Pathologist and proper documentation is presented.

Swallowing disorder (dyspahgia), may be characterized by:

• Frequent respiratory problems or pneumonia

• Coughing or choking while eating or drinking

• Sudden weight loss

• Poor secretion management or drooling

• Pocketing food in the oral cavity with difficulty dislodging it

• Globus, or feeling like something is stuck in your throat

Difficulty swallowing may cause people to choke while drinking liquids or eating foods with certain textures that are more difficult to swallow. Instead of going down the esophagus, food or liquids are inhaled into the windpipe.

A Speech Therapist or SPL will do an examination of the tongue and swallowing muscles to determine the exact malfunction. Sometimes a special imaging procedure called a Modified Barium Swallow is needed. This procedure, which is painless, is performed in conjunction with the Radiology department/SLP and is often described as an X-ray of the swallowing mechanism.

During this test, patients are asked to swallow a liquid called barium, then to eat contrast material of different consistencies-thin liquid, thick liquid, and solid. The barium acts as an illuminator so that during X-ray, areas of the swallowing mechanism can be highlighted to determine if they are functioning properly. The precise location and manner of a swallowing defect can then be identified.

Results of this test are reviewed by a Speech Pathologist and Radiologist and then forwarded to the patient's physician.

Treatment typically consists of knowledge/changes in dietary types of foods and their consistencies, positioning of the head during swallowing, exercises, to include stimulation designed to improve swallowing.

Drooling is common for persons with spasticity in the bulbar muscles. The spasticity leads to poor coordination in moving saliva to the throat, resulting in saliva accumulating and spilling over. Consult your physician for treatment options.

Swallowing behavior therapy suggestions:

• Take sips, or only as much liquid can be managed in one
  swallow

• Pause before swallowing. Hold liquid in mouth, wait,
  then swallow

• When taking pills, moisten mouth and throat first by
  drinking a little water. You need a good, strong swallow
  for pills. If taking three/four pills becomes too much, cut
  down on the number, or crush them, coat them with oil.

• Before eating solid foods, wet the mouth and throat with
  water. Start each meal with a drink. Chew thoroughly, do not
  rush, and drink water periodically to wash down the solid
  food.

• Manage your solid food by making sure it is moist: dip
  sandwich in liquid.

• Cut down on dry bulky, dry items as too much bread.

• Add mayonnaise, dressing, catsup, mustard to sandwiches/hotdogs/hamburgers

• Eat open-faced sandwiches

• Have a lemon wedge with water

• When dining out, slowly eat, relax, chew thoroughly and bring your unfinished meal home

Editor's Note: There is a submission by a couple of our community members on speech therapy and augmentative devices at Patient Forum - Speech.

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Supportive counseling

Periods of feeling down about having a disabling disorder are normal and expected. Here are some every-day tips to help in coping with chronic illness:

• Learn how to live with the physical effects of the illness (good symptom management)

• Learn how to deal with the treatments

• Make sure there is clear communication with your doctors

• Try to maintain emotional balance to cope with negative feelings

• Try to maintain confidence and a positive self-image

• Get help as soon as symptoms of depression appear

It is normal to feel down about having a chronic condition and to feel depressed from time to time. However, if periods of depression becoming overwhelming, it is time to seek help. Please visit the National National Mental Health Association page on Depression.

Editor's Note: One of our community members submitted a piece on caregiver stress. Please see Patient Forum - caregiver.

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Diet and alternative medicine

Diet

There are no known studies indicating that vitamins or food supplements are an effective treatment for PLS or HSP. However, there are studies indicating particular antioxidants may be of benefit in related neurologic conditions, such as ALS. Please see Clinical trial drugs to review information regarding co-enzyme Q10, alpha lipoic acid and vitamin E in particular. Other anti-oxidants include vitamin C, selenium and beta-carotene.

It is generally recognized that eating a healthy, well-balanced diet is important to overall health. Individuals should always get recommendations from their physicians before taking any vitamins or food supplements. A great additional source of information is the USDA Food and Nutrition Information Center.  

Alternative medicine

Alternative Medicine is usually described as practices not generally accepted as part of the standard approaches used by licensed physicians or other licensed health care providers. Practitioners using these methods are generally not licensed as health care clinicians, but may be licensed for a specific method, such as acupuncture or massage, or licensed in another health field, such as nursing. 

Some licensed physicians and other health care providers may use an alternative medicine method or refer patients to practitioners of an alternative medicine method. Many individuals pursue treatments on their own.

There is a lot of quackery and fraud in some forms of alternative medicine. Please seek the advise of your physician.

A list of popular alternative medicine modalities often used by individuals with HSP or PLS are below. Their inclusion is for informational purposes only and not a recommendation or endorsement. 

• Massage therapy: The use of touch and various manipulation techniques to move muscles and soft body tissues to relieve stress, tension, and pain. For more information, see the National Certification Board for Therapeutic Massage and Bodywork.
   

• Therapeutic Electrical Stimulation (TES):  TES is a technique used by some clinicians to improve muscle strength and muscle coordination in persons with muscle spasticity. It involves administering electrical stimuli to the skin overlying weakened muscles (usually muscles opposite to spastic muscles). The goal is to increase blood flow to muscles in which fibers are atrophied. Although individual cases have shown some benefit, studies generally show no benefit.
   

• Chiropractic treatment: A treatment method that depends primarily on manipulating or adjusting the spine to prevent disease and treat pain and other ailments. Some people have found that chiropractic spinal manipulation can help reduce their back pain, and some claim a temporary improvement in their gait. For more information, see the American Chiropractic Association.
   

• Acupuncture: An ancient system of Chinese medicine where thin needles are inserted into specific points on the body. Chinese medicine identifies these points as conducive to energy and connected to specific organ systems in the body. The purpose is to alleviate various health conditions. Some individuals have indicated an improvement with spasticity after treatment. For more information, see the Acupuncture Center.
   

• Magnet therapy: Magnet therapy claims that magnet fields have healing powers. Most of the support is anecdotal and testimonial and is generally attributed to the placebo affect. There is almost no scientific evidence supporting this theory, however, there was a large study done indicating benefit at Bayer College of Medicine. That has not been replicated. Nonetheless, there a growing industry is producing all types of products with magnets. Some individuals in our community have reported benefit.
   

• Biofeedback: Biofeedback treatment uses relaxation and visualization (imagery) to lower stress levels, alleviate headaches, or reduce blood pressure. Instruments measure information about bodily processes, such as muscle tension, skin temperature, brain waves, and respiration. Several studies have shown visualization to be very useful in stress reduction. See Yahoo Guided Imagery and Eupsychia Institute.
   

• Alexander Technique: The theory behind the Alexander Technique is that by reeducating a person's mind and body, tension can be reduced and ease of movement increased. Most information appears to be from commercial websites. Guide to Alexander Technique, Alexander Techniques.

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Clinical trial drugs

Individuals are encouraged to participate in clinical trials that will further the understanding of our conditions and their diagnosis, treatment, and cures. Please go to clinical trials and search on key words "primary lateral sclerosis" or "hereditary spastic paraplegia" to find out about relevant clinical trials.

Some studies for related motor neuron diseases and other neurodegenerative conditions involving over the counter vitamins, food supplements and FDA approved drugs are showing encouraging results. Some individuals with HSP or PLS, with the advice of their physician, are taking these compounds as part of their treatment plans.

The list below is provided as an informational source and is not intended to be a recommendation. For detailed information, contraindications and side effects, please visit Medline Plus Health Information. For information on vitamins and food supplements, visit the USDA Food and Nutrition Information Center. And of course, consult your doctor or pharmacist.

FDA approved treatment for ALS

Rilutek, Riluzole

Riluzole is the first FDA approved drug for the treatment of ALS. Riluzole does not cure ALS or improve symptoms, but may extend the survival of patients by a few months. Riluzole appears to be more effective in patients with bulbar-onset than for those with limb-onset. Riluzole is believed to modulate the release of glutamate. Glutamate neuronal damage is one of several theories that have been proposed as a cause of ALS.

Please see:

Creatine supplementation and riluzole treatment provide similar beneficial effects in copper, zinc superoxide dismutase (G93A) transgenic mice. Snow RJ, Turnbull J, da Silva S, Jiang F, Tarnopolsky MA. Neuroscience. 2003; 119(3):661-7

Riluzole prolongs survival and delays muscle strength deterioration in mice with progressive motor neuronopathy (pmn). Kennel P. et al. J Neurol Sci 2000 Nov 1;180(1-2):55-61

Adverse efects of riluzole (Rilutek) in the treatment of amyotrophic lateral sclerosis. Roch-Torreilles I.[Article in French] Therapie 2000 Mar-Apr;55(2):303-12

Drugs and supplements with compelling data

Celebrex

Celebrex is an FDA-approved drug for the treatment of rheumatoid arthritis, osteoarthritis and pain. The active ingredient Celecoxib is a nonsteroidal anti-inflammatory drug (NSAIDS).

Johns Hopkins University has tested Celebrex in the (ALS) SOD mouse model. It was shown to extend the life of the mouse by some 25%. It also protected neurons against chronic injury by a substance called glutamate. There is significant data supporting the neuroprotective effects of anti-inflammatory drugs in Alzheimer’s.

The recommended dosage for Celebrex is 100mg-200mg orally, twice per day. Celecoxib (Celebrex) is available by prescription from your physician.

Please see:

COX-2-Selective NSAIDs: new and improved? Lichtenstein DR. et al. JAMA 2000 Sep 13;284(10):1297-9

Non-steroidal anti-inflammatory drugs with selectivity for cyclooxygenase-2 in Alzheimer's disease. Rationale and perspectives. Blain H. et al. [Article in French] Presse Med 2000 Feb 12;29(5):267-73

Creatine

Creatine is a dietary supplement that is promoted for its ability to enhance muscle strength and physical endurance. This claim is not endorsed by the FDA. This dietary supplement is similar to the natural compound creatine phosphate, which is an essential component of the energy-building system in muscle cells. It is found naturally in meats and fish.

A study with ALS mice found that the mice had significant improvements in their survival with creatine. ALS patients under the care of their doctor are taking 5-10 grams/day. Creatine is available over the counter at any store that carries dietary supplements.

Please see:

Creatine supplementation and riluzole treatment provide similar beneficial effects in copper, zinc superoxide dismutase (G93A) transgenic mice. Snow RJ, Turnbull J, da Silva S, Jiang F, Tarnopolsky MA. Neuroscience. 2003; 119(3):661-7

Neuroprotective effects of creatine in a transgenic animal model of amyotrophic lateral sclerosis. Klivenyi P. Nat Med 1999 Mar;5(3):347-50

Note: A new study, conducted in the Netherlands and published online in March 2003 by The Archives of Neurology, found that creatine provided no significant benefit in humans with ALS, even though earlier studies showed promising results in mouse models.

Co-Enzyme Q10

Co-enzyme Q10 is a non-prescription dietary supplement that is involved in a variety of cellular processes. It has been noted to have antioxidant properties, such as free-radical scavenging. CoQ10 is indicated for heart failure and mitochondrial cytopathies.

Researchers in a Massachusetts General Hospital study found that CoQ10 extended the survival in a mouse model of ALS. They also demonstrated positive findings in Parkinson’s and Huntington’s Disease. It is thought that CoQ10 may be useful for the treatment of neurodegenerative diseases.

There have not been studies to suggest a recommended dosage for people with neurodegenerative diseases. Patients, while under the care of their physician, appear to be taking 100mg three times per day. CoQ10 is fat-soluble and should be taken with a fatty meal. it is available over the counter at any store selling dietary supplements.

Please see:

Coenzyme Q10 administration and its potential for treatment of neurodegenerative diseases. Beal MF. Biofactors 1999;9(2-4):261-6

Coenzyme Q10 administration increases brain mitochondrial concentrations and exerts neuroprotective effects. Matthews RT. et al. Proc Natl Acad Sci U S A 1998 Jul 21;95(15):8892-7

Alpha-Lipoic Acid

Alpha-lipoic acid (ALA) is a non-prescriptive dietary supplement. It is a powerful antioxidant and is used to treat individuals with liver disease and Amanita mushroom poisoning.

A Massachusetts General Hospital study done on mouse models of ALS showed a significant improvement in mouse survival when ALA was administered in their diet. ALA has a very short half-life (the time it takes for the drug to decay by one half) and it is not known if the drug levels are maintained in humans to produce the same effect.

ALS patients under the care of their physician are taking 200-300mg twice per day. Alpha lipoic acid is available over the counter at any store selling dietary supplements.

Please see:

Effects of an Inhibitor of Poly(ADP-Ribose) Polymerase, Desmethylselegiline, Trientine, and Lipoic Acid in Transgenic ALS Mice. Andreassen OA. et al. Exp Neurol 2001 Apr;168(2):419-24

Antioxidants and herbal extracts protect HT-4 neuronal cells against glutamate-induced cytotoxicity. Kobayashi MS. et al. Free Radic Res 2000 Feb;32(2):115-24

Thiol oxidation and loss of mitochondrial complex I precede excitatory amino acid-mediated neurodegeneration. Sriram K. et al. J Neurosci 1998 Dec 15;18(24):10287-96

Vitamin E

Vitamin E is a fat-soluble vitamin found in many foods. It is a powerful vitamin and antioxidant that detoxifyies free radicals. It helps protect the cells of the body from damaging chemical reactions and it is important for the proper functioning of nerves and muscles.

Vitamin E is found in vegetable oils, meat, eggs, certain types of fish, wheat germ, cereal grains, fruits, green vegetables .

Some ALS studies have found that dietary supplementation with vitamin E delays onset of clinical disease and slows progression in the transgenic model. It does not prolong survival.

For average dose for ALS patients under the care of their physician is 1200-2000 IU/day. Vitamin E is available over the counter at any store that sales vitamins.

Please see:

Blood oxidative stress in amyotrophic lateral sclerosis. Bonnefont-Rousselot D. et al. J Neurol Sci 2000 Sep 1;178(1):57-62

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