Hi all, I have a client with SMA who is in a PWC, very little movement, trach/vent, eye gaze for computer, fiber optic switches at both thumbs and right index for chair control. He cannot press a switch with any force at all, and is non-verbal. Yes/no’s are an eyebrow raise, and a very slight frown/purse. He is having nightmares about being in bed and his nurse having an issue or sleeping through his vent alarms. He wants a way to get emergency help from the bed. It really cannot be just a noise, as at times, the nurse is the only other person in the home.  He has 24 hour nursing, and is turned every 2 hours when in bed overnight. He has resting hand splints, and wears one for two hours, then the other when he switches sides. He has tried options for head movement (too minimal), eyebrow, eye blink (lashes), EMG, etc., but all are either not working, or work too much to be effective. When splint straps on, he has no hand movement in the hand with the splint. He can’t lip seal on a straw to generate a sip/puff. Power wheelchair is across the room to charge and give room around him for care.

 

I was musing about using fiber optics in a gooseneck as a switch to scan on a smart phone, but would need an option for control which could move side to side as he is rolled, multiple nurses, middle of the night, etc. Does anyone have anything they might recommend in this super complicated case?

 

Thanks, Amber

 

Amber L. Ward, MS, OTR/L, BCPR, ATP/SMS, FAOTA

Occupational Therapy Coordinator, Wheelchair evaluator

Cabarrus College of Health Sciences- Adjunct Professor

Executive Board- Clinician’s Task Force

 

Neurosciences Institute Neurology, Carolinas Neuromuscular ALS/MDA Center

Joint Commission- Disease Specific Care Certified ALS Center

Carolinas Healthcare System is Atrium Health

O- 704-355-0787

F- 704-446-6084

 

Address: 1010 Edgehill Rd North, Charlotte, NC 28207