grgizi121
Member
- Joined
- May 13, 2013
- Messages
- 21
- Reason
- CALS
- Diagnosis
- 05/2013
- Country
- UK
- City
- Birmingham
I am sorry if this post seems rather blunt but I have no idea who to ask a question that just wont go away, its been in my head for months!
What specifically do people with MND normally die from. Is it normally respiratory failure? On a percentage basis does this account for 90%, 50% .... if so what would the other causes be?
My husband was diagnosed May 13 and although his arms, hands, legs and speech are severely effected and he is starting to have a little difficulty swallowing his doctors aren't concerned that his breathing tests have 'decreased a little' and stated it didn't suggest any sign of muscle weakness. Which we had started to fear due to other symptoms
Obviously we think this is great news so mentally we are planning for the future assuming we still have a lot of time left as a family to plan holidays and looking forward to this Christmas and next! I am more confidently assuming he looks set to exceed the 3-5 year life expectancy. Yet there is a nagging doubt in the back of my mind that this might not be the case!? That I am just kidding myself and that there are other equally as serious things that may shorten our time together still?
Every time I ask a medical professional what we should expect I get the 'every one has a different path' statement! Which I understand but I need to know what the potential life ending issues are! Should i be as concerned about swallowing as I am about breathing issues, or is this resolved successfully with a PEG in most cases? Its really difficult to ask these questions in front of my husband and almost impossible to ask any other time as I have no access to the medical professionals directly
We have two children 3 and 7 and I know my husband and I want him to be around as long as possible for them. I know I have some anxiety issues nowadays and I also know I sound a little crazy, I think maybe nowadays I am! But any help advice very much appreciated
Thanks in advance
What specifically do people with MND normally die from. Is it normally respiratory failure? On a percentage basis does this account for 90%, 50% .... if so what would the other causes be?
My husband was diagnosed May 13 and although his arms, hands, legs and speech are severely effected and he is starting to have a little difficulty swallowing his doctors aren't concerned that his breathing tests have 'decreased a little' and stated it didn't suggest any sign of muscle weakness. Which we had started to fear due to other symptoms
Obviously we think this is great news so mentally we are planning for the future assuming we still have a lot of time left as a family to plan holidays and looking forward to this Christmas and next! I am more confidently assuming he looks set to exceed the 3-5 year life expectancy. Yet there is a nagging doubt in the back of my mind that this might not be the case!? That I am just kidding myself and that there are other equally as serious things that may shorten our time together still?
Every time I ask a medical professional what we should expect I get the 'every one has a different path' statement! Which I understand but I need to know what the potential life ending issues are! Should i be as concerned about swallowing as I am about breathing issues, or is this resolved successfully with a PEG in most cases? Its really difficult to ask these questions in front of my husband and almost impossible to ask any other time as I have no access to the medical professionals directly
We have two children 3 and 7 and I know my husband and I want him to be around as long as possible for them. I know I have some anxiety issues nowadays and I also know I sound a little crazy, I think maybe nowadays I am! But any help advice very much appreciated
Thanks in advance