How do you live day to day. Comments, share your experiences? To trach or not to trach?

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Sep 24, 2019
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 didn’t expect to make it this long. I figured once I couldn’t eat and/or breathe (with NIV) that I would be hanging it up. As it is now, I’m not that miserable. Heck, I haven’t been in person to a Dr since my last visit to the pulmonologist in the summer of 2017. I just didn’t see the point. I just needed a few pieces of equipment and that was about all they could provide anyway. In terms of handling adl’s, I was on my own.

So now I am pondering what I want to do next. I understand that I haven’t planned ahead for the feeding tube and trach. Didn’t really think I would do it. My pulmonologist wasn’t very encouraging about it. But as my life is now, I’m 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 don’t 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, I’m 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 don’t have the resources to get out and haven’t 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
Jimi, I can’t offer any advice on your question since I’m not at that stage, but I wanted to say that you (and your wife and Mom) are an amazing inspiration to us all. Your attitude and ability to control your environment is truly awesome. I know you will make the right decision either way. Best, Kevin
Jimi, I didn't realize how close our timelines are. I'm 50 and was also diagnosed in February 2015, after less than a year of bulbar symptoms. I have no idea why I'm still around. I still have some movement but no strength in my legs, and soon will need the hoyer. I have a catheter for #1.

I have had a feeding tube since 2016 and I'm now on it for all of my meals and meds and most of my hydration. I only use NIV at night and my breathing is fine during the day unless I am not upright for any reason. I spend my waking hours in my wheelchair, which I control with my head. I live alone and receive care from a combination of family, friends, and paid caregivers. I am alone for a few hours in the afternoon and from about 10-8 overnight. I have made it clear that I do not want to have a trach or be intubated. Maybe I would feel differently if I had a spouse, but I just don't want the added discomfort and 24/7 care, which wouldn't be a big adjustment for you.

Mentally I am ready to hang it up, but my body won't let go. I'm not depressed so much as tired.
Hi, Jimi and Jessie - thank you for sharing your situations. You are inspirational.

I'm not yet where you are. I had lower extremity onset. I'm confined to a PWC but I don't yet require a feeding tube or NIV. I'm not quite at needing a Hoyer but will in time. Losing ability to use my hands and arms so feeding assistance is also in view.

Jimi, you said, "So now I am pondering what I want to do next."

I think that even PALS who have not gotten as far down the path as you are ponder this question, and each will have a different answer. You have done an amazing job functioning with ALS, though I don't believe all PALS could live as you do. I can't offer any insight on trach/no trach though perhaps some here will be able to.

I'm sorry that you and Jessie had to deal with ALS at such a (relatively) young age, but am happy for you that you can continue to function and remain engaged and are not in pain. You sound like a remarkable person.

Best regards,
Hi Nona! Thanks for sharing some of your thoughts with me. Like you, I’m not depressed but mentally it is tiring. You sound so tough doing so much alone. You are impressive to me. I’m not religious. I have had some experiences in my life that give me pretty high confidence that there is more to life then we can comprehend and our energy and consciousness carries on. Of course I don’t know for sure. That’s what I find freighting. I often make mental lists comparing the pros and cons of sticking around. As you point out, having a wife makes things different. Maybe.. At what point do I feel like too much of a burden? Complicating matters is my 13 year old daughter who I see regularly and just love seeing grow. At what point will I cease to be a positive part of her life ? Lots of things to ponder. Then there is always that slim chance that 5-10 years from now a way to cure and repair is found. Technology and medicine is accelerating… I would be bummed to find out that had I just hung around a bit more ..
Thanks Bill. You are right about tolerating life in this fashion. I never imagined that I would be still laughing and feeling joy at this point. There is no doubt that this attitude is getting progressively more difficult to maintain. I'm not sure what the limit is. As you said, it's different for everyone.
Hey Jimi,

I loved your initial post ("10:45pm wife prepares me for bed - face wipe, nose pick"...) And your subsequent post... "I would be bummed to find out that had I just hung around a bit more .." I am quite sure my wife is smiling down on both those perspectives now!

Jimi you are an inspiration. Jessie, you too are such an inspiration!

Jimi, I honestly believe it is ultimately about your support network - could they press on for the long haul?... I am confident you are ready and willing to make a go of it...are they?

If you go 'trache' when it becomes necessary, it will be all hands on deck for an extended period of time. If your wife and your Mom (and hopefully others) are up for it, you can do it indefinitely. We did it for quite some time, and it was both very challenging and laced with much beauty. I'd love for you to experience that extended time with your loved ones....but I always hesitate to overly encourage folks in that direction since it can be rather daunting.

Happy to answer more questions or give more insight, but I sense you all can do it. All the best...Jon
Thanks Jon for your candor. I love the thought of bringing a smile to your wife! I may be hitting you up for advice in the future.
Hi, Jim. I'm glad you are still able to laugh and feel joy. Those are wonderful gifts. I would guess that for at least some of those moments you are with another person. You are building into them by sharing your joy and laughter, and also by your example of how you are dealing with the disease. Your daughter as well. Good for you.
I have Bulbar onset ALS as of 11/01/19. I have a feeding tube and a port access for edvarone transfusions. I still have full mobility but have difficulty eating and breathing getting worse by the day. I am facing a ventilator in the next six months and do6think I want to live with that. Feedback on this subject is welcome. I am 61 and think I am ready to die vs. putting up with a ventilator.
Jim, your positive attitude will take you a long way with accepting and learning to live with a tracheostomy if you decide to go for it. My husband made the decision that he would get a trach "when the time came" shortly after his diagnosis. He wanted to see our adult kids grow and be able to celebrate their life accomplishments. Among other things, Gary was able to be there when our oldest son was married and then over the years bring three grandkids into the world. Although we weren't able to travel to see it in person, our younger son graduated from college (we were relieved when he made it through high school, but as we hoped, maturity took hold and he made it.) And again, he did not get to witness it, but was delighted when our daughter got her master's degree and a couple of years later headed off to get her PhD, which she is still working on.

Gary got the trach about 4 years after diagnosis, and actually had it placed, on the recommendation of the pulmonologist (so that it wouldn't need to be done in an emergency situation) before he needed to start using it. It was plugged for a bit and the trach site had a chance to heal before he needed to start using it. He thought having the trach was a lot more comfortable than the Bipap and mask and adjusted to it pretty quickly. I learned how to care for it and was his sole caregiver except for having someone come by a couple times a week for 3-4 hours so I could got to the grocery store, bank, or whatever. It seems that having a trach wouldn't change the routine in your household since you already have have a schedule and two wonderful ladies who are available to help you. At first it will take some adjustment and there will most likely be additional suctioning - I am assuming you already have cough assist and suction machines, and you have to add daily trach care (which doesn't take much time) to your daily schedule. If you go for it, I would suggest finding a different pulmonologist. Gary's doc, while being on the verge of retirement, was progressive and supportive. Having the trach did add some extra time onto our to-do list, but he was always grateful and patient and that made it easy. I would much rather have him here and still be taking care of him than have him gone.

Gary also got his feeding tube about 6 months before he needed to start using it, and it sounds to me that if you are only having pureed food, it certainly is not too early for you to get serious about getting a g-tube if it is in your plan. Just my humble opinion.:cool:
I have read these posts with gratitude for the willingness to share your journeys openly, and the offers of understanding and support. I also appreciate the useful ideas and information/experience, and also the deepfelt, respectful support for making what choices are available. The candor is so sincere. I've learned a lot and offer my compassion to all. My husband, active and in great health his entire life, is 72 and recently diagnosed after declining the past 18 months. We had confusion because symptoms correlated to weeks immediately following open heart surgery, and until last Nov, assumed issues were related. My husband is struggling after two confirming diagnoses and not at acceptance. I am 69 and on my own path of learning and adapting and struggling but I don't in any sense compare the two struggles. Our loyal and generous son is 30 and lives a block away and our beautiful daughter is 25 and with us for the duration of COVID furlough (few more months). I have put my husband in touch with a wonderful person who does "Captain Courageous" work -- captaining your own courageous journey. Her input seems to resonate deeply with my husband and I'm glad for that.
Thanks rnewton60, for sharing your thoughts. I respect your opinions.

Akjo, thanks for sharing your very inspiring story. It helps.

Janders, all my best to you as you adjust to your situation
I suggest finding Mark Manchester's story which is incredible! <commercial link removed>
One thing I do, is look for encouragement and positive things each day. I have hope and faith in God. That's what keeps me going.
@Cathy H there is a forum for religion here, you might find posting in there works better. welcome to the forum, tell us a little about yourself so we can walk the journey with you 😊
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