Benefits of tracheostomy ventilation

Here people with Motor Neurone Disease (MND) talk about the benefits of having tracheostomy ventilation (TV). They discuss

  • Prolonging life
  • Managing symptoms
  • Not wearing a mask

Prolonging life

The most significant benefit of tracheostomy ventilation is that it prolonged the life of the person with MND, enabling them to continue spending time with family and friends:

[name] chose to have a TV rather than die.

Mark A says that without the TV [they] would have missed out on some amazing experiences.

James shares all the life experiences he’s had since getting TV.

Mrs J says it was “the most wonderful thing” that her husband lived to see his son’s 8th birthday

Kuai Peng’s partner wants to live to see his children grow up. He has seen several milestones in their lives since having his tracheostomy.

Pat says TV is “not for everyone” but her husband has a good quality of life.

Managing symptoms

Tracheostomy ventilation meant that people no longer struggled to breathe, and it helped them to deal more easily with symptoms such as secretions.

Dr Wong says he can now breathe more normally and chest congestion can be cleared

Phillip says TV allows [them] to no longer worry about anything entering their lungs.

Richard no longer suffers bouts of pneumonia and says the TV allows him to cope better with MND symptoms.

CS04P01: Person with MND (email text)

[Name] says having a tracheostomy changed [their] life. Before the TV [they] struggled to breathe and it was distressing for [their] children to see.

Kuai Peng says that with TV, her husband is able to lead a relatively “normal” life.

Some family members said that TV helped them to feel more confident in supporting the person with MND to manage their symptoms.

The TV gives Kim options for managing [their relative’s] saliva secretions.

The tracheostomy made Gillian feel more confident about being able to help in the event of [their relative] choking

Not wearing a mask

For people with MND who had experience of using NIV, not having to wear a face mask was more comfortable and helped people to communicate more easily.

Brian feels that he looks more “normal” not wearing a mask.

Kuai Peng’s husband finds he is more comfortable not wearing a mask.

However, not everyone we spoke to who had previously used NIV was motivated by negative experiences of using a mask.

Hugh says he used to enjoy scuba diving so he was already used to wearing a mask.