DavidS
New member
- Joined
- Jan 18, 2010
- Messages
- 4
- Reason
- Lost a loved one
- Country
- CA
- State
- Ontario
- City
- Thornhill
Hi All,
Firstly, I will introduce myself briefly as I feel that is appropriate around here.
Basically, I'm 20, my dad is in his late 50's, got ALS 3.5yrs ago and in the past few days has been admitted to the hospital, first for a GI bleed after his GJ tube fell out and was replaced by a PEG, then, just as he was about to be released, he started coughing and his O2 sat dropped heavily (already being on 24h bipap) so after much of my objection to 'losing my father as a father' we went with intubation (oral) as a temporary solution to the pneumonia that he now has (upon recommendation by the chief ICU doc who said his hyperactive heart/breathing would crash within hours if we didn't).
This is a hectic time, especially seeing how in April, my dad was still driving and biking long distances.
Now the doctor is suggesting a tracheostomy. Another scary concept for a young person like myself. Once again, I really and truly fear losing my father as a father figure and hate having to see him as a patient, but that appears to be the current reality. Also, I feel guilty for being avoidant for quite some time aka not being horribly proactive to ALS related issues preferring to assume that I could deal with all of them 'later'.
Now is later.
My dad has poor speech and his upper body has little muscle along with very weak hands which have lost much of their gripping power.
Oddly enough, his legs are still very strong.
Now as he lies in the hospital bed, he can't speak with the tube in his mouth but he points to a letter board with his toes.
Does anyone know if there are 'foot keyboards' with large keys (~1" x 1") that my father could type with? I was also thinking of a trackball or a laser mouse which I could tape to his socks for easy browsing. Another suggestion was a dual panel display, having the one at his feet being a touch screen.
I also recently found a program called Dasher online which sounds intriguing.
I was wondering, as the discussion inches towards a trach, can one walk around with a trach in? seems to me like most people that have trachs are past the walking stage so I wanted to know if it is possible/does anyone do it/does it aggravate the tubes/throat?
I don't see why my dad need by limited to a bed/chair when just days ago he was walking around fine as we tow the bipap behind him on our makeshift cart.
On a side note, he does have restless leg syndrome which causes one to kick in the middle of the night and generally he doesn't care for sitting for long periods of time (or just general restlessness I suppose). Do any other PALS have RLS/find that they still have strength in their legs? this may be an odd coincidence, or there may be something worth investigating
Thoughts?
Firstly, I will introduce myself briefly as I feel that is appropriate around here.
Basically, I'm 20, my dad is in his late 50's, got ALS 3.5yrs ago and in the past few days has been admitted to the hospital, first for a GI bleed after his GJ tube fell out and was replaced by a PEG, then, just as he was about to be released, he started coughing and his O2 sat dropped heavily (already being on 24h bipap) so after much of my objection to 'losing my father as a father' we went with intubation (oral) as a temporary solution to the pneumonia that he now has (upon recommendation by the chief ICU doc who said his hyperactive heart/breathing would crash within hours if we didn't).
This is a hectic time, especially seeing how in April, my dad was still driving and biking long distances.
Now the doctor is suggesting a tracheostomy. Another scary concept for a young person like myself. Once again, I really and truly fear losing my father as a father figure and hate having to see him as a patient, but that appears to be the current reality. Also, I feel guilty for being avoidant for quite some time aka not being horribly proactive to ALS related issues preferring to assume that I could deal with all of them 'later'.
Now is later.
My dad has poor speech and his upper body has little muscle along with very weak hands which have lost much of their gripping power.
Oddly enough, his legs are still very strong.
Now as he lies in the hospital bed, he can't speak with the tube in his mouth but he points to a letter board with his toes.
Does anyone know if there are 'foot keyboards' with large keys (~1" x 1") that my father could type with? I was also thinking of a trackball or a laser mouse which I could tape to his socks for easy browsing. Another suggestion was a dual panel display, having the one at his feet being a touch screen.
I also recently found a program called Dasher online which sounds intriguing.
I was wondering, as the discussion inches towards a trach, can one walk around with a trach in? seems to me like most people that have trachs are past the walking stage so I wanted to know if it is possible/does anyone do it/does it aggravate the tubes/throat?
I don't see why my dad need by limited to a bed/chair when just days ago he was walking around fine as we tow the bipap behind him on our makeshift cart.
On a side note, he does have restless leg syndrome which causes one to kick in the middle of the night and generally he doesn't care for sitting for long periods of time (or just general restlessness I suppose). Do any other PALS have RLS/find that they still have strength in their legs? this may be an odd coincidence, or there may be something worth investigating
Thoughts?
