Reviewed by Veena Angle, MBBS, MD and Physician Brandon Yew

How to Live a Full Life Despite Having Spinocerebellar Ataxia

Published September 14, 2022| 7 min read

Spinocerebellar ataxia is a rare, inherited disease with no cure. Here is how you can live a full life even after the diagnosis.

Person on a wheelchair wheeling by himself

Spinocerebellar ataxia is a rare disease, with only around three persons per 100,000 having the disease. The condition is inherited and progressively damages the nerve cells in the brain, usually in the cerebellum.

There is currently no cure, however, it doesn’t mean that patients should give up hope. Various therapy options can help one lead a more comfortable and productive life. Learn more about these treatment options.

Causes of Spinocerebellar Ataxia

The exact pathology responsible for spinocerebellar ataxia is not yet known. However, it is known to be inherited due to a defective gene. According to Traditional Chinese Medicine (TCM), the disease is caused due to inherited pathogenic factors like Wind, phlegm and blood clots located deep within the meridian, sinews, muscles and joints. The vital organs involved in spinocerebellar ataxia development are the Heart, Spleen, Liver and Kidneys.

A man is walking with crutches — Spinocerebellar ataxia is inherited due to a defective gene.

Spinocerebellar ataxia usually affects adults from age 25 years and onwards. Patients suffer from loss of balance and coordination and slurred speech. Other symptoms include difficulty in swallowing, cramps and muscle stiffness, numbness in hands and feet, loss of memory, difficulty in controlling the bladder and slow eye movements.

Living with Spinocerebellar Ataxia

While there isn’t a treatment for the condition, a neurologist can help plan a rehabilitation program to help with symptoms.

In addition to Western medicine, alternative medicines can help support patients with spinocerebellar ataxia. Real Health Medical Senior Physician Brandon Yew says, “TCM can help manage the symptoms through herbal medications, acupuncture, moxibustion, cupping, and tui na (Chinese manual therapy). Therapy is formulated based on a patient’s specific body constitution, hence it’s important to get a proper assessment from a trained TCM physician”.

Symptomatic treatment

You may be given treatment to relieve symptoms like tremors, seizures, depression, loss of balance and eye symptoms. Botox injections may be provided to reduce spasticity.

Physiotherapist working on a patient in bed — Physical therapy and neurorehabilitation can help to maintain motor functions in spinocerebellar ataxia.

Neurorehabilitation and physical therapy

Patients with spinocerebellar ataxia benefit significantly from physical therapy and neurorehabilitation. Physical therapy helps to maintain balance and gait, and it also helps improve physical strength and helps lead independent lives. Occupational therapy trains patients to use supports like wheelchairs, crutches, walkers and feeding devices to make routine activities easier.

Herbal remedies

Physician Yew recommends the following herbal remedies:

Di Tan Tang (涤痰汤): Dispels Wind, Dampness and phlegm to unblock meridians, restores and enhances qi and blood circulation for improved mobility.
Ban Xia Bai Shu Tian Ma Tang (半夏白术天麻汤): Dispels Dampness, phlegm and Wind to unblock meridians, strengthens Spleen qi to improve muscle tone for better mobility.

Tong Qiao Huo Xue Tang (通窍活血汤): Dissipates blood clots, unblocks meridians to improve qi and blood circulation for better mobility.
Xiao Huo Luo Dan (小活络丹) and Da Huo Luo Dan (大活络丹): Dispels Wind, Dampness, phlegm and blood clots to unblock meridians for improved qi and blood circulation, promoting better mobility.
Bu Yang Huan Wu Tang (补阳还五汤): Dispels Wind and blood clots to restore and enhance meridian circulation. Regenerates Heart and Spleen qi to improve muscle tone for better mobility.
Di Huang Yin Zi (地黄饮子): Regenerates blood, yin and yang of the Heart, Liver and Kidneys to improve the strength of muscles, sinews and joints. Dispels Wind and phlegm to unblock meridians for improved qi and blood circulation, promoting better mobility.

Acupressure

Acupressure to relieve symptoms can easily be performed at home with the help of a blunt object like a massage stick or your own fingers. Simply massage each acupoint in a clockwise and anticlockwise circular motion, 20 times. Repeat for at least three minutes per acupoint.

Physician Yew suggests the following acupoints:

For symptoms at the head, eyes, neck, and shoulders such as muscle stiffness, cramps and slow eye movement:

Located on top of the head, at the midpoint of the line connecting the tips of the ears. It helps dispel localised pathogens to allow better qi and blood circulation for improved alertness, cognition and mood.

Located above the left eye, on the left side of the forehead.

TAI YANG — Tai yang (EX-HN5) is located in the region of the temples, in the depression about one finger-breadth posterior to the midpoint between the lateral end of the eyebrow and the outer canthus.

Illustration showing location of the jing ming acupoint. — You can find jing ming (BL1, 睛明) slightly above the inner corner of the eye.

An illustration of si bai to relieve eye pain — With the eyes looking straight forward, the point is directly below the pupil, in the depression at the infraorbital foramen.

An illustration of feng chi as one of the acupressure points to heal symptoms of cold — Feng chi is located at the back of the neck, where you can feel a depression on the base of the hairline as shown above.

Jian Jing (GB21) is located on the shoulder directly above the nipple, at the midpoint of the line connecting the acromion and the depression below the spinous process of the 7th cervical vertebra.

In the upper portion of the shoulder, in the depression between the outer end of the clavicle and the scapular spine.

Located in front of the neck, in the centre of the depression above the sternum. It dispels Cold, Fire and phlegm and clears the upper respiratory tract.

Bai hui (DU20, 百会)
Yang bai (GB14, 阳白)
Tai yang (EX-HN5, 太阳)
Jing ming (BL1, 睛明)

Si bai (ST2, 四白)
Feng chi (GB20, 风池)
Jian jing (GB21, 肩井)
Ju gu (LI16, 巨骨)

For speech, chewing and swallowing difficulties, this acupoint is recommended:

Tian tu (RN22, 天突)

Acupoints for symptoms such as muscle stiffness and cramps in the upper limbs:

Located where the tip of the middle finger touches the palm when a fist is made.

To locate Qu Chi (LI11), flex the elbow and press down the point in the depression at the lateral end of the transverse cubital crease.

Located at the end of the elbow crease, two thumb-widths down along the forearm muscle.

On the dorsal aspect of the forearm, on the line connecting yang chi (SJ4) and the tip of the elbow, two finger-breadths above the transverse crease of the wrist between the ulna and radius bones.

In the middle of the transverse crease of the wrist, between the 2 tendons of the front of the forearm.

An illustration of a left hand, showing he gu (LI4) acupressure point — He gu is located on the back of the hand, between the 1st and 2nd metacarpal bones. It helps dispel pathogens and restores and enhances qi and blood circulation within the meridians.

On the lateral side of the upper arm, just over and in front of the insertion of the deltoid muscle.

When a loose fist is made, the point is on the ulnar aspect of the hand, above the 5th metacarpophalangeal joint, at the end of the crease of the wrist.

Bi nao (LI14, 臂臑)
Qu chi (LI11, 曲池)
Shou san li (LI10, 手三里)
Wai guan (SJ5, 外关)
Da ling (PC7, 大陵)

He gu (LI4, 合谷)
Lao gong (PC8, 劳宫)
Hou xi (SI3, 后溪)

Acupoints for symptoms such as muscle cramps and stiffness in the lower back and lower limbs:

On the lower back, in the depression 3.5cm to the side of the lower border of the spinous process of the 4th lumbar vertebra.

Above the knee, in the depression of the midpoint of the superior patellar border.

Zu San Li (ST36) is located on the anterior aspect of the lower leg, 4 fingers-breadth below the outer depression of the knee joint, one finger-breadth (middle finger) from the anterior crest of the tibia.

Located on the medial side of the shank, at the depression posterior and inferior to the medial condyle of the tibia.

Along the midline behind the thigh, at the midpoint of the gluteal fold and the transverse crease behind the knee.

At the back of the knee, on the popliteal crease, in a depression midway between the tendons of the biceps femoris muscle and semitendinosus muscle .

Wei zhong is midpoint of the transverse crease behind the knee, between the biceps femoris and semitendinosus tendons. Cheng shan is on the posterior midline of the lower leg, the depression below of gastrocnemius muscle when extending the toes straight or lifting the heel.

An illustration of a right foot, showing san yin jiao (SP6) acupressure point — On the inner lower leg, four fingers-breadth above the tip of the inner ankle bone, just behind the shin bone. It revitalises the functions of the Spleen, Liver and Kidneys.

3D illustration of the tai xi acupressure point — Located on the tibial aspect of the leg, posterior to the medial border of the tibia, three finger widths inferior to the Yin Ling Quan acupoint.

3D illustration of the Taichong (LV3) acupressure point — Located on top of the foot, in the depression closest to the first metatarsal space. It revitalises the Liver.

Yao yan (EX-B7, 腰眼)
He ding (EX-LE2, 鹤顶)
Zu san li (ST36, 足三里)
Yin ling quan (SP9, 阴陵泉)

Yin men (BL37, 殷门)
Wei zhong (Bl40, 委中)
Cheng shan (BL57, 承山)
San yin jiao (SP6, 三阴交)
Tai xi (KI3, 太溪)

Tai chong (LR3, 太冲)

Physician Yew cautions that acupressure only provides mild relief from spinocerebellar ataxia symptoms. Acupuncture performed by a licensed TCM practitioner will be more effective.

There may be no cure for spinocerebellar ataxia, but there’s no reason you can’t live a fulfilling life. Traditional remedies and rehabilitation can go a long way in making life more comfortable and keep you going!