irismarie
Very helpful member
- Joined
- Nov 21, 2009
- Messages
- 1,386
- Reason
- PALS
- Diagnosis
- 05/2010
- Country
- FR
- State
- tarn et garonne
- City
- valeilles
I want a refund. NONE of those delicious male nurses were there. Nothing like!
But a sweet man came to measure and fit bipap for me. HE went down to the cafe and bought me a coffee and brought it up to me; I HATED the bipap first night. He had left two masks but I chose the mouth and nose one but HOW it left a cold lump in my chest and HOW it dried my mouth. I thought so much of you all , my friends. It was you who got me through the night!
Anyway, I reported this and so he came with a new one with nebuliser of warm water, SO much more comfortable.
I asked him about trachs and he said that now they could do them tiny enough to leave vocal chords intact. Good news, no?
He gets to call at my house to keep tags on me.
I had swallowing and speech tests in depth.
My mouth is not doing various things it should be, which causes my difficulties. I never realised eating was SO complicated. BTW I thought my profile on the Xray was quite pretty - good bone structure, but did not care much for the full face;-)
SO speech, breathing and ALS specialists are now all in touch and will be keeping that way to do their best for me. It is wonderful!
I went downstairs to the café just once. Did NOT fall down! While I was reading my magazines and drinking my illicit coffee, I noticed people looking at me. Then a lady got up from a table and came and said, "we were just saying what amazing eyes you have and how pretty you are!" so that cheered me up a lot. (vanity, vanity, all is vanity! But it is so silly) Then ANOTHER lady came over to me and asked what was wrong with me, which ward and room I was in. She announced herself a healer who wanted to help me. I told the nurses about her when I went back and I think, if she did turn up, they must have blocked her as they were not happy at all!
I just love the way French specialists get stuck and help, not a bit like English surgeons, who seem to think they are God. They work huge long hours, hands on. I asked about going down to the cafe and the specialist went and made me one herself to save me going down! IMagine that in UK§ NEver!
Anyway, I shall write a blog if I can make time in my busy schedule here in bed to tell you the more intimate and detailed thoughts.
But I promise you, you were all there with me, holding my hands in the bad bits, like when the swallowing expert put the camera down my nose to watch me swallowing.......... What a baby I am becoming!
Lots and lots and lots of love
But a sweet man came to measure and fit bipap for me. HE went down to the cafe and bought me a coffee and brought it up to me; I HATED the bipap first night. He had left two masks but I chose the mouth and nose one but HOW it left a cold lump in my chest and HOW it dried my mouth. I thought so much of you all , my friends. It was you who got me through the night!
Anyway, I reported this and so he came with a new one with nebuliser of warm water, SO much more comfortable.
I asked him about trachs and he said that now they could do them tiny enough to leave vocal chords intact. Good news, no?
He gets to call at my house to keep tags on me.
I had swallowing and speech tests in depth.
My mouth is not doing various things it should be, which causes my difficulties. I never realised eating was SO complicated. BTW I thought my profile on the Xray was quite pretty - good bone structure, but did not care much for the full face;-)
SO speech, breathing and ALS specialists are now all in touch and will be keeping that way to do their best for me. It is wonderful!
I went downstairs to the café just once. Did NOT fall down! While I was reading my magazines and drinking my illicit coffee, I noticed people looking at me. Then a lady got up from a table and came and said, "we were just saying what amazing eyes you have and how pretty you are!" so that cheered me up a lot. (vanity, vanity, all is vanity! But it is so silly) Then ANOTHER lady came over to me and asked what was wrong with me, which ward and room I was in. She announced herself a healer who wanted to help me. I told the nurses about her when I went back and I think, if she did turn up, they must have blocked her as they were not happy at all!
I just love the way French specialists get stuck and help, not a bit like English surgeons, who seem to think they are God. They work huge long hours, hands on. I asked about going down to the cafe and the specialist went and made me one herself to save me going down! IMagine that in UK§ NEver!
Anyway, I shall write a blog if I can make time in my busy schedule here in bed to tell you the more intimate and detailed thoughts.
But I promise you, you were all there with me, holding my hands in the bad bits, like when the swallowing expert put the camera down my nose to watch me swallowing.......... What a baby I am becoming!
Lots and lots and lots of love
