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Tay-Sachs, Canavan, GM1 and Sandhoff diseases


Late Onset (LOTS)
Tay-Sachs, Sandhoff and GM1 diseases

A common issue for people living with Late Onset Tay-Sachs, Sandhoff or GM1 is the progressive loss of mobility or in other words, a person's progressive loss of their ability to get from one place to another. Poor mobility may be caused by a combination of muscle weakness, spasticity of muscles and/or coordination problems.  Whatever the particular cause, however, a Physical Therapist and/or Occupational Therapist can offer help.

It is important to notice the signs of reduced mobility:

  • Frequent falls
  • Difficulty getting from point A to B
  • Exhaustion after short movements

Often people with LOTS view another step on the mobility progression as a new limitation, but in fact the right assistive devices used properly as per instructions can provide people with LOTS with more independence, a greater degree of freedom and with more autonomy than might otherwise have been possible.

Regular exercise is strongly recommended for all affected individuals to help them maintain the highest level of mobility possible. Everyone can do some type of daily physical activity, regardless of particular limitations. For example, you can raise and lower your arms, turn your head slowly from side to side or up and down, and tighten and relax your muscles. Any exercise is better than no exercise at all. However, it is important to not over-exercise muscles, especially weak muscles, and an exercise program should be designed under the supervision of a qualified Physical Therapist.

NTSAD appreciates the high cost of new mobility assistive devices and can work with you, if necessary, to put together an appeal to a denial of health insurance coverage. Many times, assistive devices, especially motorized wheelchairs and scooters, ramps, and stairway chairs, can be purchased secondhand. However, it is important to make sure that the correct device is purchased, and it is always best to have a Physical Therapist evaluate the assistive device to make sure it is being correctly used.

Physical Therapy

The Physical Therapist (PT) develops an exercise program to address your particular mobility challenges in order to promote independence and function in everyday life. The PT also orders mobility aids and teaches you their proper use.

Occupational Therapy

The Occupational Therapist (OT) works to enhance function and independence in everyday life by:

  • Exploring new ways of engaging in favorite activities or hobbies
  • Demonstrating adaptive techniques which can help one to overcome hand tremors and improve dexterity
  • Suggesting appropriate home and work space modifications
  • Providing tools and strategies to deal with symptoms that interfere with driving
  • Ordering adaptive aids and demonstrating their proper use in particular circumstances.

How to Find a Physical Therapist and/or Occupational Therapist

Generally, the treating physician will provide a referral to you for Physical and/or Occupational Therapy. The PT and OT will then coordinate their work with that of other members of your care team.  Treatment by a PT and/or OT may be covered by your health insurance.

Use the State Association search found on the homepage of American Occupational Therapy Association to find the occupational therapy association in your state so it can help you find an OT in your area whose services may be covered by your insurance plan.

The American Physical Therapy Association provides a national database of members for you to find a PT in your area whose services may be covered by your insurance.