Jimi
Distinguished member
- Joined
- Sep 24, 2019
- Messages
- 299
- Reason
- PALS
- Diagnosis
- 02/2015
- Country
- US
- State
- CA
- City
- Torrance
Sorry in advance for the random rambling..
To anyone who has the patients to read this, I appreciate any input or details of how everyone manages their existence with ALS in the more advanced stage. I really didnāt expect to make it this long. I figured once I couldnāt eat and/or breathe (with NIV) that I would be hanging it up. As it is now, Iām not that miserable. Heck, I havenāt been in person to a Dr since my last visit to the pulmonologist in the summer of 2017. I just didnāt see the point. I just needed a few pieces of equipment and that was about all they could provide anyway. In terms of handling adlās, I was on my own.
So now I am pondering what I want to do next. I understand that I havenāt planned ahead for the feeding tube and trach. Didnāt really think I would do it. My pulmonologist wasnāt very encouraging about it. But as my life is now, Iām wondering how much worse could it get? Sure I will miss food, but I will really love not wearing a mask to breathe! In terms of speech, this will be a minor shock, as I am already pretty hard to understand. What changes given my current existence does everyone foresee? I donāt need constant attention now, although someone is home within hearing alarm distance in case of breathing equipment failure.. I will describe how I live in detail below to give an idea of what would need to change if I go with the trach.
At 52 yrs old, Iām at just over 6 years since dx and 8 years since symptoms. I am paralyzed except for my neck/head movement. I have been reliant on NIV 24/7 for 2 years and 4 months.. Food is pureed. I donāt have the resources to get out and havenāt left my room in 2 years. I can control my room's environment with my head movement via 2 computers and a smartphone. This includes controlling my power recliner that I spend 22.5 hours a day in, lights, tv, stereo, fans, cameras and emergency alarm. I have everything down to a consistent routine to minimize the care that is required. I am in no pain and take no medications. I live with my mom and wife. My wife handles 95 % of my care. With her hard work and the restrictions I have put in place for my activities, we have managed to make this work so far. She has time to go out and do her own activities, with my mom around just in case I have a problem. This might be the rare occasion that I need to pee or need a mask adjustment. My recliner is a lift chair which makes #1 into a urinal a minimal effort, 5 minute job. I go #1 from my recliner 5-7 times per day. My daily schedule is as follows:
6:30am I am usually up
7:30 am Wife up, switches to my daytime mask and puts my headphones in. Takes 5-10 minutes and she goes back to bed until 9am
8:15am mom brings me cup one of coffee and positions it so I can reach the straw.
8:40 mom brings coffee cup two
9:00 wife up. Removes my finished coffee. Gets herself some coffee and food
9:30 wife hoyers me to shower/commode chair, rolls me to bathroom. I go #2, wash hands,face and private areas (wed & sun extra 30 minutes for complete sponge bath). Teeth are brushed. Nose picked. Bipap day mask washed. Urinal dumped and washed. Cough assist is used for 6 sets of 6 breaths each set. We do every day regardless of if I need to. Really keeps my airway clear. Also electric razor and nose/ear trim a couple times a week.
11:00 wife transfers me back to recliner,makes breakfast
11:30 wife feeds me
11:50 take vitamins and get comfortable
12:00pm-5pm my headphones are in and I need to drink .5 to .75 liters of water and pee a few times over the next 5 hours. Optional is a few leg crosses back and forth depending on who is around.
5:00 wife makes dinner
5:30 wife feeds me
5:50 wife wipes my face and mask off with washcloth
6:00 I drink my last .5-.75 liters of water
8:30pm wife feeds me yogurt
9:15 wife brushes my teeth and washes night bipap mask
9:30 we bend my legs up and put my arms up over my head (good stretch for an hour)
10:45pm wife prepares me for bed - face wipe, nose pick, mask switch
11:00pm lights out. I can move myself as needed with my head mouse and computer controlled recliner. I usually fall asleep between 11:30-12
To anyone who has the patients to read this, I appreciate any input or details of how everyone manages their existence with ALS in the more advanced stage. I really didnāt expect to make it this long. I figured once I couldnāt eat and/or breathe (with NIV) that I would be hanging it up. As it is now, Iām not that miserable. Heck, I havenāt been in person to a Dr since my last visit to the pulmonologist in the summer of 2017. I just didnāt see the point. I just needed a few pieces of equipment and that was about all they could provide anyway. In terms of handling adlās, I was on my own.
So now I am pondering what I want to do next. I understand that I havenāt planned ahead for the feeding tube and trach. Didnāt really think I would do it. My pulmonologist wasnāt very encouraging about it. But as my life is now, Iām wondering how much worse could it get? Sure I will miss food, but I will really love not wearing a mask to breathe! In terms of speech, this will be a minor shock, as I am already pretty hard to understand. What changes given my current existence does everyone foresee? I donāt need constant attention now, although someone is home within hearing alarm distance in case of breathing equipment failure.. I will describe how I live in detail below to give an idea of what would need to change if I go with the trach.
At 52 yrs old, Iām at just over 6 years since dx and 8 years since symptoms. I am paralyzed except for my neck/head movement. I have been reliant on NIV 24/7 for 2 years and 4 months.. Food is pureed. I donāt have the resources to get out and havenāt left my room in 2 years. I can control my room's environment with my head movement via 2 computers and a smartphone. This includes controlling my power recliner that I spend 22.5 hours a day in, lights, tv, stereo, fans, cameras and emergency alarm. I have everything down to a consistent routine to minimize the care that is required. I am in no pain and take no medications. I live with my mom and wife. My wife handles 95 % of my care. With her hard work and the restrictions I have put in place for my activities, we have managed to make this work so far. She has time to go out and do her own activities, with my mom around just in case I have a problem. This might be the rare occasion that I need to pee or need a mask adjustment. My recliner is a lift chair which makes #1 into a urinal a minimal effort, 5 minute job. I go #1 from my recliner 5-7 times per day. My daily schedule is as follows:
6:30am I am usually up
7:30 am Wife up, switches to my daytime mask and puts my headphones in. Takes 5-10 minutes and she goes back to bed until 9am
8:15am mom brings me cup one of coffee and positions it so I can reach the straw.
8:40 mom brings coffee cup two
9:00 wife up. Removes my finished coffee. Gets herself some coffee and food
9:30 wife hoyers me to shower/commode chair, rolls me to bathroom. I go #2, wash hands,face and private areas (wed & sun extra 30 minutes for complete sponge bath). Teeth are brushed. Nose picked. Bipap day mask washed. Urinal dumped and washed. Cough assist is used for 6 sets of 6 breaths each set. We do every day regardless of if I need to. Really keeps my airway clear. Also electric razor and nose/ear trim a couple times a week.
11:00 wife transfers me back to recliner,makes breakfast
11:30 wife feeds me
11:50 take vitamins and get comfortable
12:00pm-5pm my headphones are in and I need to drink .5 to .75 liters of water and pee a few times over the next 5 hours. Optional is a few leg crosses back and forth depending on who is around.
5:00 wife makes dinner
5:30 wife feeds me
5:50 wife wipes my face and mask off with washcloth
6:00 I drink my last .5-.75 liters of water
8:30pm wife feeds me yogurt
9:15 wife brushes my teeth and washes night bipap mask
9:30 we bend my legs up and put my arms up over my head (good stretch for an hour)
10:45pm wife prepares me for bed - face wipe, nose pick, mask switch
11:00pm lights out. I can move myself as needed with my head mouse and computer controlled recliner. I usually fall asleep between 11:30-12