How to Live a Full Life Despite Having Spinocerebellar Ataxia

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:

  • 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: 

  • 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: 

  • 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!

References

  1. News Medical Lifesciences. 2018. What is spinocerebellar ataxia? [online] [Accessed 15 August 2022] 
  2. StatPearls. 2022. Spinocerebellar ataxia. [online] [Accessed 15 August 2022] 
  3. Nature Reviews Disease Primers. 2019. Spinocerebellar ataxia. [online] [Accessed 15 August 2022] 

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