Doctors and pharmacists
Respiratory physician
The doctor responsible for your breathing, who interprets your breathing tests and prescribes ventilation if and when you decide to try it.
A respiratory physician looks after the medical side of breathing. They interpret your breathing tests, decide when to start non-invasive ventilation and on what settings, and are the doctor involved if invasive ventilation is ever discussed. In practice you may see them rarely and see the rest of the respiratory service often, which is normal and not a sign that something has been missed.
How you reach this person, and who pays, depends on where you live. Set your country in Location and Compass will show what applies there.
What they can help with
- Explaining breathing tests, and what a falling number does and does not mean
- Explaining when non-invasive ventilation might help, and prescribing it once you decide to try it
- Adjusting settings when ventilation is uncomfortable or not working
- Sleep-related breathing problems, which often show up before daytime ones
- Cough assist and secretion management, alongside physiotherapy
- The tracheostomy conversation, if and when you want to have it
When you might meet them
- Once breathing is being monitored, which in most services is from early on
- When you are more tired in the day, or waking with a headache
- When breathing tests have changed
- When you have started to feel breathless lying flat
- When a chest infection has been harder to clear than usual
- Whenever you want to understand the options before you need them
Things you could ask about
- What are my numbers, and what will you do when they change?
- What would starting ventilation actually feel like day to day?
- Can I try it and stop if I hate it?
- Who do I call when the machine or the mask is the problem, rather than my chest?
- What happens if I get a chest infection?
Not to be confused with
Not the person who decides whether you have ventilation. That decision is yours, and it is one of the most personal decisions in ALS/MND. A respiratory physician explains what your numbers mean, what starting would involve and what happens if you change your mind, and prescribes it when you choose it. They are also not usually the person who fits your mask or fixes your machine. That is normally a nurse, a physiotherapist, a scientist or, in North America, a respiratory therapist.