Ideas for head tilting

noh1m

New member
Joined
May 4, 2019
Messages
6
Reason
Loved one DX
Diagnosis
09/2018
Country
US
State
North Dakota
My brother was diagnosed last September. He has been able to control his chair using his head, ie. raise/lower footrests, backrest and drive if he chooses, but he does not. The doctor tells me that his progression is on the rapid side of rapid progression and gives him 6 months to a year ( I think maybe sooner than 6 months) The only body part he can move now is his head but his neck is getting weaker. His voice is so bad he has to really push to get the words out. He has a Tobii communicator but chooses not to use it, yet. He spends all day in the bedroom in his chair with the bipap on.

This morning he told me his head is getting hard to hold up and we need to do something about it. It is affecting the one last thing he can do for himself, the ability to control his chair. When we do a transfer, his head leans bad. To compound things, he is very claustrophobic will not wear the neck brace. The only time I can get him to wear it is when we are in the van going to appointments.

Sorry for the rant, so here is my question. I have a feeling this will be a near impossible thing to do but what are my/his options to keep his head upright and still be able to hit the pads on the head array to control the chair?

Jon
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
7,525
Reason
Lost a loved one
Diagnosis
09/2009
Country
US
State
WA
Permobil and Stealth head array products offer options for greater positioning as someone progresses, and there is expertise nationally in "hybrid alternative driving systems," but you need an ATP who knows something about this stuff. I do not know who your DME is. I will PM you a contact in your area.

Short story, as long as he has volitional head movement, or any other muscle, it should be possible for him to control the chair.

Best,
Laurie
 
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