Progression with Bulbar onset MND

[shelly21]

I'm bulbar onset & diagnosed 5 months ago. I insisted on my peg as even though my swallow is good my tongue is very weak & like Ellie mentioned it gets harder to move food around.
what i don't want is to loose weight so my peg can be used for when my tongue dies.
my breathing is unaffected.

how are you getting on with your speech? What are your concerns re a peg.

[Ellie]

Worsleybird Breathing is predominantly a spinal issue, not bulbar, affecting the diaphragm and intercostal muscles. xx

[Ellie]

Warts and all experience of my swallowing difficulties:

If your swallow is affected how does that affect you - I just cannot imagine not being able to swallow, is it like choking or you wouldnt choke as your muscles no longer work? Sorry if this is painful to chat about. Im just trying to work out if I can cope .

Worsleybird Bulbar symptoms and failures aren't restricted to those with Bulbar Onset ALS and will affect the vast majority of those with Limb Onset ALS. Here is my experience of how bulbar impairment has affected my ability to eat and drink and, btw, there's more to eating than swallowing...

• My tongue, being a muscle, basically doesn't work, so I can't move food around my mouth (kind of necessary for eating most foods)
• My soft palate has collapsed, so I can regurgitate food and liquid through my nose.
• My muscles involved in swallowing are weak and don't always sent liquids down my oesophagus, opting instead to shoot them down my trachea causing violent coughing fits or a laryngospasm, neither of which are pleasant experiences as it feels like you can't breathe. This coughing will happen with every attempt to swallow when the swallow muscles fail and invariably food and/or liquid will end up in the lungs causing (recurrent) chest infections and pneumonias.
• My lip seal isn't intact, so liquids can overspill.

If you've any more questions, I'll happily answer them.

Re progression patterns: there are none...

Love Ellie.

[matthew55]

I'm nearly two years in and my breathing and swallow are fine. I'm informed that once my swallow goes my breathing follows very quickly. Happy Days. 😁😂😎😍xx

[Worsleybird]

Here again and still pondering the ins and outs of PEG. Now been given an oximeter and had blood gases for a PEG op possibly next week.
My swallow and breathing are unaffected at the moment. Has anyone got Bulbar whose swallow and breathing are not affected?

If your swallow is affected how does that affect you - I just cannot imagine not being able to swallow, is it like choking or you wouldnt choke as your muscles no longer work? Sorry if this is painful to chat about. Im just trying to work out if I can cope .

Bulbar progression - does it follow a predefined order of things going wrong/failing - just wondering what bit of me is next to go?