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Practical Tips

General Health

  • Try to maintain a healthy weight.
  • Exercise to increase muscle strength and balance. Even if exercise does not stop disease progression, it can help “train” the body to compensate.
  • Consider physical therapy.
  • Consider stopping or reducing drinking of alcohol because alcohol exacerbates symptoms of speech difficulty and balance.

    • Perspective: These healthy habits are good for everyone, whether affected, at risk, or a caregiver. Apparently, it is trendy now to drink exotic non-alcoholic drinks that are fun with the upside that you feel well the next morning.

Home modifications

  • Home modifications are important for safety and convenience, such as night lights, canes, walking sticks, and walkers to prevent falling, shower mats and safety bars or chair for shower may be helpful.
  • Consider weighted eating utensils and dressing hooks to help with eating and dressing.

Movement

  • Annual or semiannual evaluation by a neurologist.
  • Physical therapists can help focus exercise on retention of muscle strength and balance.
  • Some members have found exercises at this link useful: click here
  • Acetazolamide may decrease episodes of ataxia.
  • Vestibular suppressants may reduce vertigo(dizziness).
  • Tremor-controlling drugs are not usually effective in reducing cerebellar tremors.
  • Driving ability should be assessed by professionals periodically.

Sight

  • Ophthalmology consultation may help with refractive or surgical management of double vision.
  • Prisms in glasses, or in some cases surgery, may help.
  • Ampyra can help with nystagmus (extra wiggly Eye movements) and it might help with vertigo

Speech

  • Speech therapy and communication devices may help with speech clarity.

Eating

  • Consider feeding assessment if eating becomes difficult. Video esophagrams may help identify safest behaviors and consistency of food least likely to trigger aspiration.
  • Thicker food consistencies and chin tuck, with head tilted down and straight, may help.
  • One of our members suggested the 'Contigo non spill coffee mug' after trying several:

Sleep

  • CPAP may help with sleep apnea.
  • Clonopin may help with REM sleep disturbance.
  • Avoid sedative hypnotics that increase incoordination.