Charlotte G
New member
- Joined
- Sep 25, 2012
- Messages
- 2
- Reason
- Loved one DX
- Country
- US
- State
- WIsconsin
- City
- La crosse
My brother has been living with bulbar onset ALS for nearly 2 years. He just turned 64. He is trying to decide whether or not to have a procedure to prepare him for using a mechanical ventilator. He has asked his care team (at a major East Coast academic hospital/als research facility) to help him find someone on a vent who can talk or communicate with the aid of a caregiver about what life on a vent is like. His team has not yet been able to find someone, although they have tried. I have asked neurology staff at the clinic/hospital where I work but no results so far. Can anyone suggest a way to help my brother make this connection? His typing dexterity is limited, but he can still do some keyboarding. He has read extensively on this crucial topic, but wants to hear from a person, not a journal article or clinical narrative, before he makes up his mind. Can you help me help my brother find the right person to have this difficult but crucial conversation?