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tholt

ALS patient support

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Hello Everyone,

 

I am working with a patient that is struggling with ALS. His movement is limited and the disease is progressive. I have provided many 1on1 activities and also some family movie nights. Does anyone out there have suggestions on more activity ideas for an ALS patient?

 

Thanks! Tom

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ALS can develop an unusual symptom called “pseudobulbar affect.” Crying or laughter at inappropriate times that is difficult to shut off.  Pseudobulbar affect is the result of a brain reflex that is no longer working correctly. It does not necessarily mean that a person is feeling anxious, sad, depressed, or emotionally distraught.  Pseudobulbar affect may manifest yet there are no other cognitive, behavioral, or psychological symptoms. Simplify communications and break sentences up into short phrases. Ask yes/no questions. Slow down when speaking. Most importatly, look for the meaning behind the emotions - - misinterpreting ALS communications only adds to resident fustrations.

Check his history for his preferences for leisure pursuits and partner with therapy professionals to get creative in finding new ways to allow him to  keep doing what he did before the disease onset. Look to add activities that create a diversion from his disease yet help him on the path towards well-being.

Add "fun" physical wellness oriented activities and work with P.T. and O.T. and S.T (speech therapy)  to incorporate activities that involve low impact exercises to enhance cardiovascular fitness. Include breathing exercises activities in the daily routine as respiratory muscles may get weaker. Occupational therapy can help with ideas to maintain independence by learning new ways to compensate for hand and arm weaknesses and speech therapy can suggest alternate adaptive techniques for communicating - perhaps computer-based communications. The loss from this disease is profound but you can support his emotional wellness as the activity professional through activities that are intended to allow him to feel that he still has some control over his body.

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