Everyday life with Tracheostomy Ventilation

We spoke to people with MND and their family members about how they experience everyday life with tracheostomy ventilation. Daily routines are variable, but structured around personal, medical and tracheostomy care, social activities and going out. Here, some people with MND describe their typical day and what a good day looks like in comparison to a bad day.

Typical Day

Dr Wong describes his typical day

Typical daily activities: I usually wake up around 9-9:30 am. I will check WhatsApp message, emails, Twitter and Facebook. I also read BBC news. I will speak to my wife around 10:30 am for half an hour before observations and personal care. I have pump feed at 3 pm and blood sugar test. I will have passive exercise after. Insulin at four o’clock then ten o’clock. I will be hoisted to wheelchair at 6:30 pm and I will spend the evening with family in the lounge. During the day I will listen to You Tube music videos or watch TV on my computer. Around midnight I return to my bedroom. I’ve medicine four times a day. During summertime I will walk in the park opposite with my wife and carers.  

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James uses eye gaze and shares what his daily routine looks like.

My Daily Routine: Wake six forty-five and start with a planned sequence of procedures for equipment and personal care. This includes stretching exercises. Transfer to wheelchair approximately eight thirty and continue with personal care and medication and breakfast through PEG. This completes about ten with TV dressing change. Once in the wheelchair I can use eye gaze. Usually start by saying good morning to family and friends by WhatsApp. The morning is a mix of coffee and stoma care and preparation for the day. I always prefer to be outside. It maybe my garden, a walk, or a trip out in the afternoon. I will always make time when my sons visit. And the family dog. Approximately five pm I cycle on an assisted machine for about 22 minutes. The evening routine starts at seven pm with about an hour of personal care and medication. I usually then catch up with friends and family on eye gaze and listen to music. I settle for sleep approximately nine thirty.

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Brian’s routine is variable. If he goes out, it’s usually before lunch.

So usually Gillian will get my breakfast in bed about half eight and then we’ll maybe watch a bit of TV. Then get the carers through half nine, 10 o’clock. They then get me up, showered, dressed [unclear 0:28:56]. So then about half 11 I’ll either sit in the armchair or go into my wheelchair if we’re going out. Usually, like today, I go into my armchair and basically I’ll just do stuff on the computer, read, read the papers. Then I’ll have my lunch about one, half one. Usually, if I’m going to go out, we’ll go out before lunch. We’ll maybe go to the shops or whatever, then I would come back, and I’ll be in my chair for the afternoon. I’ll have dinner about six o’ clock and usually I’ll go down to my bed about seven, half seven, sleep or read or watch TV or whatever. But it’s actually quite variable, it depends on the people, time to time going out for a coffee or whatever. But yes, that is our basic routine.

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Mark A describes his routine on a workday. He has a motability car, a hoist in the office, and an assistant at work, and uses an Eyegaze computer.

When going to work I have my medication at 6:30 have a wash, cough assist, trachy care, dressed, hoist to my wheelchair ready for work. I leave about 8:00 in the morning where the carers put me into my Motability car arriving to school about 8:30. I put my PEG feed on and start my workday in my office which has a hoist in for me. I have an eye gaze computer which I do everything on so take it to work. I have an assistant at work funded through the government scheme Access to Work. I leave work about 3:30 and when I get home am transferred to my comfy chair which has an airflow cushion. At night and weekends I watch a lot of television, films, especially football. My friends and family visit me a lot just to catch up or watch football. I very rarely go out as it is much easier to visit but do go to my best friends to see my godchildren. I very rarely go outside to see friends mainly because I can’t use my computer outside which is difficult in warm weather. I don’t sleep very well at all so avoid going to bed early probably about 11:30 when the carers get me sorted etc. and then the process starts again.

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Good days v bad days

We asked people with MND to describe what makes the difference between a good day and a bad day for them. A good night’s sleep, good company and opportunities to get outdoors all contribute towards good days.

For Brian, sleep and secretions have the biggest impact on how he feels.

Probably how well I’ve slept the night before. And sometimes I’ll have a lot of secretions and I have to be suctioned frequently, which is tiring, but that’s very variable, I mean it seems to happen for no particular reason, so I guess they’re probably the two things that determine how good I feel.

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Steve A shares the two things that influence his mood.

Sleep, and if United win or not.    

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Visits from family and friends help distract Mark A from the affect MND has had on his life.

A bad day for me is when I don’t have anything to do, have no visitors and am alone with the carers. I think all those things distract me from my life and how sad and cruel it has become… I have been through some horrendous experiences slowly losing functions of my body but doing things with my family and friends and work helps distract and entertain me.

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Challenges of Tracheostomy Ventilation

We talked to people who have Motor Neurone Disease (MND) and their families about the challenges of living with Tracheostomy Ventilation (TV). Here they discuss:...