RESEARCH

FSMA funds many of the research programs for SMA!
Here is a link to their research section.

Genetics & Testing

CURE

Currently there is not a cure for SMA, but researchers say they are so close it is projected to be within the next five years.

THERAPY

Vojta Therapy:

     The therapeutic use of reflex locomotion enables elementary patterns of movement in patients with impaired central nervous systems and locomotor system to be restored once more—at least in part—, i.e. they become accessible once more.
      In Vojta Therapy, the therapist administers goal-directed pressure to defined zones on the body in a patient who is in a prone, supine or side lying position.
                       http://www.nidd.org/therapy_vojta.htm

Hippo Therapy:

Hippotherapy is a physical, occupational, and speech-language therapy treatment strategy that utilizes equine movement as part of an integrated intervention program to achieve functional outcomes.Equine movement provides multidimensional movement, which is variable, rhythmic and repetitive. The horse provides a dynamic base of support, making it an excellent tool for increasing trunk strength and control, balance, building overall postural strength and endurance, addressing weight bearing, and. motor planning.

HydroTherapy:

Water therapy may be very helpful in treating SMA as the buoyancy of the water allows movement of the arms and legs that may not otherwise be possible. It is important to ensure that the water temperature is at least 90˚F and that the patient's head does not go under the water.

Physical Therapy:

A brief overview by Jenny Robison, PT - The Vanderbilt Clinic, Nashville, TN

Physical Therapy is the treatment of disease and injury by mechanical means such as exercise, heat, light, massage and electricity.
Goals: Maximize function, mobility, safety, and comfort

PT assists you in walking, transfers from one place to another, exercise, pain relief and education for you and your family.

Exercise: helps maintain joint movement, mood elevation and improves sleep patterns.

Stretching: to preserve or increase flexibility
-Active: you do the stretching by yourself
-Active assisted: you do part of stretching yourself and someone helps you at the end of the motion
-Passive: a caregiver moves your arms and legs for you. Take the extremity to the point where there is resistance and stop there. Do not push too hard at the end of the motion. There may be a stretching sensation at the end of the motion, however it should not be significantly painful.

Strengthening: does not change the progression of the disease. Too much can actually over fatigue the muscle. Active exercise within the limits of your disease in important to maximize your ability and prevent disuse and contractures.

Avoid activities that cause muscle or joint pain and excessive fatigue either during or after your exercise program. Energy conservation is needed so that you do not over work body areas of increased weakness and cause overuse syndromes and more pain, weakness etc.

Equipment:

1.Braces: AFO (ankle-foot-orthosis) foot drop brace-lightweight plastic brace, which fits into your shoe and gives your foot and ankle support, KAFO (knee-ankle-foot orthosis) usually made of plastic with metal joints and uprights, supports the ankle and knee.

2.Walker-gives the most assistance for balance and walking. Wheels are needed either on the front two legs or on all four legs. Large wheeled walkers with brakes and a seat are a good choice for stability. Push down (instead of squeeze type) brakes work better for people who have hand weakness.

3. Standing frame-to allow standing and weight bearing -also gives trunk control if needed. A start for ambulation ..progressing to KAFOS

4. Hand Splints: custom made and are usually worn at night to keep the wrist and fingers in a good position and to help prevent contractures.

5. Wheelchair: needs to be evaluated by PT/OT-options to consider -manual and /or power -elevating leg rests
-adjustable height arms
-padded supportive back
-seat cushion
-headrest
-seatbelt
-tilt in space and/or recline system
-tray to assist with activities of daily living and for upper extremity support

6. Transfers:
- sit to stand
-transfer board -standard or Be-easy Board
-Hoyer lift
- Easy pivot lift
-Sure hands lift system

7. Home Care: assistance with adapting your home environment and getting the correct equipment for your situation.

Occupational Therapy:

As muscle weakness progresses and affects posture, occupational therapy can provide assistive devices and strategies to maintain positioning and movement, such as specialized wheelchairs and reaching devices.

Speech Therapy:

A speech pathologist may be able to identify whether certain foods may be particularly hazardous to a patient with SMA. To do this, a special X-ray called a "swallowing study and cine esophagram" is used. This allows the specialist to observe how a child swallows various forms of food substances such as solids, liquids, and purees. Based on these observations, a special diet may be created to ensure optimal safety and nutrition for the child.

Intellectual ability is unaffected by SMA, and while motor development is limited, a number of techniques may be used to cognitively and emotionally stimulate infants with SMA. Using balloons and feathers as toys allows children a feeling of independence and accomplishment. Reaching games are a form of physical or occupational therapy that can be very helpful. Adults with SMA benefit greatly from the use of assistive technology, such as speech recognition software. These devices allow people with even very limited mobility to use a computer to read, write, communicate, play video games, and access environmental controls.