Danijela
Senior member
- Joined
- Dec 3, 2008
- Messages
- 667
- Reason
- PALS
- Diagnosis
- 11/2008
- Country
- UK
- State
- UK
- City
- Bolton
Dear All,
I have not been very active on this form since Sept last year due to starting a new job, which involves 4 hours of commuting every day and it has been extremely challenging. Laurence pointed out this has actually been good for me, as it has allowed me to move on from various forums and focus on something else other than MND. I have been reading though, and keeping an eye.
In Nov L went into respiratory distress in the middle of the night, a scary episode and I
thought those were his final moments. I managed to push some air OUT of his lungs by using the cough assist (the air was simply leaking through his mouth, he was on his vent but suffocating). Since then he has been on NIV 24/7. We adapted, we have several machines, he takes the portable one into the shower, as well as when we go out.
He is no longer able to drive his wheelchair, so either his carers or me have to do this. His speech is also significantly affected now, making him difficult to understand. He still eats by mouth and enjoys a glass of wine, gin and tonic or similar. We try to get out, but this is getting harder. The winter has been long this year here in the UK, we had snow and he has been reluctant to go out at times. Our turned 3 in January. He is a lovely and lively little lad. He is now fully aware of what is going on. He got upset the other day when he asked me to 'draw daddy' and my drawing did not depict L sitting down or being in his w/c. He cried: 'He can't stand up! He can't hold my hand!" This was very upseting
Last week I managed to travel to Belgium with my son for a couple of days to visit my dad. I have not seen any of my family (all live abroad) for 1.5 years, and we are all missing out. I feel I am in some kind of limbo, having put my life on hold, until this is over (whatever that means). I am hoping to visit my mum soon, in order to disrupt the limbo, at least a little bit. This requries enormous amount of preparation. I noticed that I have not only missed 2 nights in 1.5 years of putting L to bed (evening routine). It is amazing what we adapt to! We have people around our house 24/7. This is both useful and really intrusive. Night sitters sometimes bang around the house, waking us all up and my son think it is morning because he hears noises, so nobody gets any sleep (and those people are there to allow me to get sleep!) I grew up as an only child, and never really had to be much around other people.
I will try to update some of the photos in my albums. Good to see a few familiar faces are still about.
Dani
I have not been very active on this form since Sept last year due to starting a new job, which involves 4 hours of commuting every day and it has been extremely challenging. Laurence pointed out this has actually been good for me, as it has allowed me to move on from various forums and focus on something else other than MND. I have been reading though, and keeping an eye.
In Nov L went into respiratory distress in the middle of the night, a scary episode and I
thought those were his final moments. I managed to push some air OUT of his lungs by using the cough assist (the air was simply leaking through his mouth, he was on his vent but suffocating). Since then he has been on NIV 24/7. We adapted, we have several machines, he takes the portable one into the shower, as well as when we go out.
He is no longer able to drive his wheelchair, so either his carers or me have to do this. His speech is also significantly affected now, making him difficult to understand. He still eats by mouth and enjoys a glass of wine, gin and tonic or similar. We try to get out, but this is getting harder. The winter has been long this year here in the UK, we had snow and he has been reluctant to go out at times. Our turned 3 in January. He is a lovely and lively little lad. He is now fully aware of what is going on. He got upset the other day when he asked me to 'draw daddy' and my drawing did not depict L sitting down or being in his w/c. He cried: 'He can't stand up! He can't hold my hand!" This was very upseting
Last week I managed to travel to Belgium with my son for a couple of days to visit my dad. I have not seen any of my family (all live abroad) for 1.5 years, and we are all missing out. I feel I am in some kind of limbo, having put my life on hold, until this is over (whatever that means). I am hoping to visit my mum soon, in order to disrupt the limbo, at least a little bit. This requries enormous amount of preparation. I noticed that I have not only missed 2 nights in 1.5 years of putting L to bed (evening routine). It is amazing what we adapt to! We have people around our house 24/7. This is both useful and really intrusive. Night sitters sometimes bang around the house, waking us all up and my son think it is morning because he hears noises, so nobody gets any sleep (and those people are there to allow me to get sleep!) I grew up as an only child, and never really had to be much around other people.
I will try to update some of the photos in my albums. Good to see a few familiar faces are still about.
Dani
