COPD

[Eun]

My son does not have COPD but he does have Duchenne Muscular Dystrophy which is now starting to affect his breathing muscles. Robert gets chest infections and when these occur he uses a cough assist machine which really helps in geting the phlegm up. He also uses nightime ventilation in the form of a Bi-pap machine which is very helpful. He also needs it now after lunch (which takes a long time to eat because he gets breathless and tired) and after dinner (can take over an hour to eat and he ends up leaving a lot of it for the same reason as lunch). What is starting to worry me is that Robert was always a big, broad lad and he seems to be losing a lot of weight but when we saw the dietician she said he should eat little and often - how are we supposed to do that when everything he eats takes ages? He would spend hours each day just trying to eat! He does have a life to live.

Eun

[Stacey]

Eun,

Have you asked the doctor for something like Forticreme, drinks or nutritional supplements? There are powders you can add to foods which supposedly are tasteless too. Even a little tub of something sweet from the supermarket between meals would help, I'm sure.

My husband has lost a lot of weight because he too gets breathless when he eats, so it's a struggle for him, especially with anything that requires chewing. However, he never was a big eater or interested in food so with him it is extra tough. At one point I was feeding him, which helped. He's improved a bit recently, but I still need to cut his food up for him in bite sized pieces.

[Megan]

I'd like to hear from anybody caring for a person with one of the breathing difficulties lumped together as 'Chronic Obstructive Pulmonary Disease'. I know there must be plenty out there as it's a very common degenerative disease, especially in smokers and ex-smokers. It just doesn't seem to figure, though, as one of the horror stories told to children as part of Health Education, and I know that because although I'd been a form tutor for thirty years I'd never heard of COPD until my husband was diagnosed with it. His breathing has worsened to the extent that even reaching forward in his chair brings it on, and he can only walk a few yards. He is becoming incontinent, and most of his nutrition comes from supplements like Fortisip and Maxijul. One blessing that he is not affected mentally by the disease.

If there is anybody out there, please get in touch! - Celia

[Stacey]

Hi Megan,

You might want to post in the new members area and introduce yourself to everyone!

... my husband still has COPD, of course. He's always been a cranky pill so I don't notice any difference when he's on antibiotics or steriods. (I read your profile info.) Many people get short tempered when they are unwell though and I suppose your husband is one of those, unfortunatley.

[evedan]

Hi Megan...

I too am a carer to my husband who has this horrible disease.....

At the moment we are awaiting the results of a biopsy as he has a tumour on the larynx...he is a high risk of it developing to cancer He also is very depressed as he is limited to what he can do!!! He loves his garden but this year we getting someone to do it for us...It is a big garden and i am not able to do it as i have neck &back problems..

Last year he went to rehab did exercises and learnt how to control his breathing if he started panic..there is a respiratory nurse that comes to see him once a month and he can get in touch with her at any time if needs be!!!! He has been in hospital a few times with bad infections, it's surprising how many people have this awful illness. hope i have not bored you too much but we are not alone and we can help one another with our experiences

TAKE CARE KEEP IN TOUCH!!!! EVE......

[Megan]

Hi Megan...

I too am a carer to my husband who has this horrible disease.....

At the moment we are awaiting the results of a biopsy as he has a tumour on the larynx...he is a high risk of it developing to cancer He also is very depressed as he is limited to what he can do!!! He loves his garden but this year we getting someone to do it for us...It is a big garden and i am not able to do it as i have neck &back problems..

Last year he went to rehab did exercises and learnt how to control his breathing if he started panic..there is a respiratory nurse that comes to see him once a month and he can get in touch with her at any time if needs be!!!! He has been in hospital a few times with bad infections, it's surprising how many people have this awful illness. hope i have not bored you too much but we are not alone and we can help one another with our experiences

TAKE CARE KEEP IN TOUCH!!!! EVE......

[Megan]

I'd like to hear from anybody caring for a person with one of the breathing difficulties lumped together as 'Chronic Obstructive Pulmonary Disease'. I know there must be plenty out there as it's a very common degenerative disease, especially in smokers and ex-smokers. It just doesn't seem to figure, though, as one of the horror stories told to children as part of Health Education, and I know that because although I'd been a form tutor for thirty years I'd never heard of COPD until my husband was diagnosed with it. His breathing has worsened to the extent that even reaching forward in his chair brings it on, and he can only walk a few yards. He is becoming incontinent, and most of his nutrition comes from supplements like Fortisip and Maxijul. One blessing that he is not affected mentally by the disease.

If there is anybody out there, please get in touch! - Celia

[Megan]

I'd like to hear from anybody caring for a person with one of the breathing difficulties lumped together as 'Chronic Obstructive Pulmonary Disease'. I know there must be plenty out there as it's a very common degenerative disease, especially in smokers and ex-smokers. It just doesn't seem to figure, though, as one of the horror stories told to children as part of Health Education, and I know that because although I'd been a form tutor for thirty years I'd never heard of COPD until my husband was diagnosed with it. His breathing has worsened to the extent that even reaching forward in his chair brings it on, and he can only walk a few yards. He is becoming incontinent, and most of his nutrition comes from supplements like Fortisip and Maxijul. One blessing that he is not affected mentally by the disease.

If there is anybody out there, please get in touch! - Celia

[charles47]

Megan, I think I've sussed your problem. Try clicking on the POST REPLY button at the bottom left of the screen under the most recent post. Then type in the blank box on the right of the little smilies.

Quick tip: use the "Quote" button when you want to give a detailed reply to a comment or where there have been other people posting in between. For example, say Excalibur has posted something you want to reply to but I and Rosemary have already posted other stuff. Click on the "Quote" button for Excalibur's post and then type your response below that text.

[Megan]

hi from megan still trying Iwill get in one day ha

[Megan]

well now im in I CANT THINK OF ANYTHING TO SAY so i will wish you all agood morning

[Megan]

THANKS CHARLES 47

[evedan]

We all have to learn ....you will ge the hang of it...practice makes perfect so they say

Hope hubby is well !!!!! Mine not too bad
Take care Eve

[charles47]

well now im in I CANT THINK OF ANYTHING TO SAY so i will wish you all agood morning

Hope that will change, Megan! Welcome aboard anyway!

[no1mum]

Welcome Megan.