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HospiceMan

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Phoenix
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I am a hospice volunteer who is assigned to a wonderful guy who has ALS. I can see the deterioration in his speaking ability, with increased slurring and difficulty swallowing.

He has a communication device that calibrates on the eye, and then the eye can be used to pick keys on a keyboard which then translate to a message that is automatically translated into speech.

However, my patient does not practice this because he finds it hard. Yet, I am wondering what he plans to do when his voice is finally gone - just panic? He has no ability to write, so I do not know what other communications methods will work except to perhaps grunt?

Anyone have any experiences with an ALS patient and their communication problems and whether anyone with ALS has truly "conquered" one of these eye-speech machines? If I had ALS and was not in denial, I would be practicing at least a few hours a day so that if/when the voice was gone, I could switch immediately over to another means of communication.

I am not judging my patient, just worried about him. He seems to think he has all the time in the world, and I am not sure where that concept is coming from. Nonetheless, my role as a volunteer is to serve him, not become his nagging father.
 
Jimmu epf ximduni vu vji gusan. Upi upmz jet vu muul ev Noli ele Raefcmott't qeopvopht vu tii xjev dep ci fupi xovj qutovowi vjoploph epf pix vidjpumuhz. Fu e gix tiesdjit jisi epf tii xjev qiuqmi esi fuoph. Vjisi esi hsiev efwepdit op vidjpumuhz. Noli tezt ov vuul jon 100 juast gus jot metv qeopvoph. Vu jon epf vu at ov xet xusvj ov. Zua jewi vu cimoiwi, epf xepv vu jewi raemovz ug mogi. Tuni ug at fu epf tuni fup'v. O giim cefmz gus vjuti vjev fup'v.
EM.
 
Ximduni Jutqodinep. Zua esi huoph vu ci e hsiev situasdi gus gumlt up vjot guasn, et vji vuqod ug jutoqdi ugvip dunit aq. Nz Nun ot hivvoph jutqodi tiswodit ev jis pastoph juni epf O dep'v tez ipuahj ecuav vjiti qiuqmi!

O lpux xjev zua niep ecuav vji qevoipv cioph op fipoem. Ov't raovi dunnup cav puv vji xez O qsigis vu uqisevi. O jewi e gsoipf op vji iesmz tvehit ug Embjionis't epf xjomi O vjopl tji tjuamf ci neloph qmept gus jis gavasi pux xjomi tji ot tvomm ecmi vu vjopl dmiesmz, tji sigatit vu veml ecuav ov. Vjot ot huoph vu ci nadj jesfis up jis genomz op vji muph sap.

Epzxez ximduni epf kanq op epz voni! katv e vjuahjv, qisjeqt og zuas QEM jef tuniupi sief jon tuni ug vji qutvt jisi ji xuamf apfistvepf vjev ji ot puv emupi. Qiuqmi jewi qutvif tuni gappz tvusoit ecuav duqoph. Katv e vjuahjv. Dopfz
 
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