Hello. I am Derek and used to be a member of NHS choices until they closed down their blog. I also write my own copd blog and am pleased that seems to have helped many people. It took on a life of it's own and there is lots of information to be gleaned from it.
I am treasurer to my local Breathe Easy Group and am enjoying trying to promote the group to bring more awareness of what we can do to help people with lung illness of all types. If you are able to I would strongly advice anyone with a lung condition to join their local Breathe Easy group. Visit lunguk.org/supporting-you/b... to find out where and when your local group meets.
I have suffered from copd since 1987. Of course at that time it was very mild and for many years I continued to lead an active life. That is probably what kept me from becoming worse for many years. The worsening of this progressive illness was slow, however, now, some 25 years later I am in the very severe stage with an FEV1 of 25%. This has meant a life change for me, as my old hobby of mountain and hill walking, wandering around the remotest regions with just a map, compass, and gps, just cannot be done anymore. It is very important to stay active with copd, so I now am a very passionate photographer as that is a hobby I can manage even if breathless. If you wish you can see some of my photography at flickr.com/photos/52429508@...
I have recently been through a pulmonary rehabilitation course at my local hospital and have to say if you have severe or like me very severe copd see your doctor or pulmonary nurse and ask to get onto one of these courses. You will come away after the six week course that is usually two hours twice a week with education about what is happening to your body and be armed with ways you can improve your life. On a local level I am now visiting our local rehabilitation groups on the last week of their course to explain the benefits of joining Breathe easy.
Being treasurer of my local Breathe Easy group I am in close contact with the British Lung Foundation here in Wales from whom I have recently been given a copy of the excellent one hour video called 'Living well with COPD'. Produced by the British lung foundation you can request a copy. Visit lunguk.org/campaigns/world-... for more information and for how to get your copy. This really is a well put together DVD that is very informative and inspirational.
One of the reasons I started to write my blog was because of lack of information about COPD. I often receive emails from very scared people that have been advised by their gp's that they have the condition, but offered no information. Many have been left feeling they have been given a death sentence. This is of course not true. If you would like to read my blog, and there is a lot to pick through, please visit bitz-and-bobz.co.uk/copd/
I look forward to reading all my fellow suffers blogs, and will at times add something of my own if I feel it can contribute.
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Yes the 'Living well with COPD' DVD is reall well put together and I would recommend it to anyone with COPD and their family & friends I am glad that you found the PR course usefull. In my area you dont have to have severe COPD & can usually get refered on the course once you have moderate COPD. I think that the course is essential to enable people to discover that they can still have a quality of life, they just have to adapt and do things in a different way. I advocate 'Do a bIt, rest a bit, do a bit more'
It is important however to continue with exercise after the course, at least 30 minutes tree or four times a week.
I look forward to reading your blog.
Best wishes
Jo
Dear Derek
Welcome and thanks for joining us here. I agree the BLF DVD Living Well with COPD is going to help so many.
PR is also an excellent option for those that can access it. I have found that putting into practise all I learnt on my PR course about 7 years ago has stood me in good stead and I now do not describe myself as suffering with COPD but someone who is living successfully with COPD. Of course its not easy, having COPD we do have to make extra efforts but the results of those efforts are well rewarded with an improved quality of life.
Jo says 'do a bit, rest a bit, do a bit more' great advice Jo, especially when people have de-conditioned or are recovering from pneumonia or chest infection, or are finding they just don't have the puff to do much else.
There are people with 23 and 24% lung function who use oxygen and still exercise, the one who exercises daily is far stronger and able to achieve a better qualityof living with copd. It's amazing what can be achieved if we do all that we can to help ourselves.
I agree do a bit, stop a bit is a good motto. I found out the wisdom of this through trial and error. I overdid it, then took a few days to get over it so many times I lost count, until I learned to do a bit, rest a bit. Being only 25% lung function I am fortunate that I am not yet on oxygen. Apart from when I have been taken into hospital when I am on O2 24/7. Last year I was unfortunate to get pneumonia and was admitted to hospital twice. The amazing thing is I just thought is was a normal exacerbation, at least until I was fighting for breath so hard I started to think I may not even make it to hospital. Never want to feel like that again.
I do exercises taught me at rehabilitation three times a week, and brought myself an exercise bike and other bits I needed. Like everyone I have my bad and better days but still continue to do the exercise even if I have to go a bit slower, and take a longer break between sets as I call them. I always say bad and better days as a good day to me would be one when I never get out of puff. But of course with my lung function that does not happen. I fully agree that exercise is what keeps us better than we would otherwise be. To do nothing is to me not an option. Even if I get breathless. And anyone that has gone on rehabilitation will know that getting breathless is not dangerous. Not doing any exercise though is
wow, fab photos, got to be good for the soul as well as body to do this.
great summary of helpful exercises on your blog, thanks.
I dont suffer from COPD but my husband does and i care for him the best way i know how to. ( I have early onset MS)
he has severe copd spends all his time in bed , he has no oxygen as his sats are always 97 or 98 I get frustrated both with him and the medical service
the medical service seem to think that if you have no oxygen then you are fine and with him because he has given up
He can barely make a cup of tea now with out getting out of breath doesnt go out so his hobbie which was fishing is now a NO GO area and although we have a mobility car we do not go out hardly at all
he has no interest but TV and ashamed to say he still smokes,
what can i do to motivate him , i wont attend the rehabilation classes as he tried them before and other then making him totally breathless did nothing for him
we have a community Nurse once a week to keep an eye on him but other than that we get no help from anyone
There is no one who will give you direct information with this illness
Hi Mojo and sorry to hear about your dilemma. It sound to me like your husband suffers from depression more than anything else and should see his doctor to discuss this. With sats at the level you describe, he certainly does not need oxygen. My sats for instance are usually 92% and sometimes lower,and they have dropped to as low as 79% when I exercise, yet I am not on oxygen. If you read my recent blogs on my site bitz-and-bobz-co.uk/copd you will read why exercise, or at least being mobile is essential.
As an ex smoker I can assure you that to continue to smoke while having copd is the last thing that he should do.
There is no 'magic pill', to make us better or less breathless. We have to do things for ourself to ease our condition. Breathlessness in itself is not dangerous, but doing nothing, and smoking with copd is. Sorry I cannot be more positive for you but as you will notice on my blog I don't beat about the bush, always telling it like it is. All the best and I do hope you manage to see the doctor with your husband to discuss his depression.
i like honesty and to the point i think its the best way forward
Your advise is good as you are right he suffers from depression but we are already under a Physiatrist and all she says is there is nothing she can do to make life better just keep taking the pills
in his words he would be happy for his world to end now , but he is only 66 years of age and would leave three chidlren and three grandchildren behind and i am only 50 yrs old and i want him for longer even though that sounds selfish
Hi Mojo50, I am in a similar position - my husband suffers with COPD and I look after him but I am very lucky that my husband wants to fight it - well sometimes he does! Such a lonely position to be in. You say a community nurse comes to visit - we have a specialist respiratory team in our area and I got referred through our practise nurse. It might be worth finding out if there is such a thing in your area. The problem I find with COPD is that you have to do all the "work" - patients and carers seem to be left with a diagnosis and thats that! There is also a Breathe Easy Group which if he doesn't want to join, maybe you could they only meet once a month and could help you with support. Also there is pulmonary rehab - my husband was referred through the specialist respiratory team - maybe you could ask either the Doctor or the practise nurse. My husband did not want to do it but felt he had to - I was very insistent ! and it changed his whole life. He still has severe COPD but he is much changed! I wonder if you could ask about physio to keep him active! Good luck TAD x
thank you for replying its great to hear from another carer
my husband is so stuburn cant get him to rehab . his orginal consultant told him give up smoking or dont bother coming back so he hasnt got a consultant. this community matron is very nice and writes prescriptions but other than that is not much help. we had a talk about end of life issues such as resus and ventalation and stated she would bring a dr out next time so his wishes can be recorded. so you see not a lot of help
I might go to the breath easy group think it would benefit at least me if not him as you are right your diagnosis then on your own to get on with it. No one will give straight answers . Mind you i have found that with my diagnosis of MS i am left in the same postion , no one around to advise or help
Hi, I have had COPD for just over 5 years. It is not, by any means, an easy condition to live with, as I am sure you are aware, caring for your husband.
I have a wonderful, caring family that I could rely on if that was what I needed, I do, but am determined not to make them suffer the condition with me!!!!
As difficult as the condition is I will not give in!!!! I do all my own housework, as hard as that may be for me, just take breaks as and when I need to. Small shopping trips to local store, in my car, I know that walking distances are out of the question, You must be positive!!!! Handle the breathlessness in a way that suits you and don't blame everyone else for your illness and make their lives a misery.
I recently purchased a small, traveller mobility scooter, must admit, not used it much, feel a little embarrassed!!! I know, get over yourself, but think I deserve a little vanity, for the time being, hehe!!!!
I have wonderful "Care in the community" A Virtual Team of nurses and matrons that visit at least once a week with a 24 hour call out and a panic button system, so feel safe 24 hours a day, I have a lot to be grateful for.
I am on maximum medication and a nebuliser. My life is nothing like it used to be but I am still here at 68 and if I have my way, will still be here in another 20 years, bit optimistic but that's me.
Just wish I could give your husband some of my positivity, if only to give you a break.You can only help those who are willing to help themselves!!!!
You are not well yourself, take a step back and let him wallow in his own misery and not allow him to make you do the same.
Nice to see you again, I do hope your well, you wrote me an open letter on the NHS choices site, I don`t know whether you can remember, I have only just seen you on this site so havn`t as yet looked at how you went on with your pulmonary exercise programme, I am still on the waiting list and can`t wait to go.
Since we last spoke I have bought myself a tri-wheeler and it is a god send I am now able to get out more and walk a bit further obviously with regular rests but I don`t care its exercise as far as i`m concerned.
Just realised I had read your blog before via copduk link. Love the new bog today, you are very busy good to see that you are still enjoying life. you are a great example of how to LIVE with COPD Keep up the good work,look forward to reading moreof your blogs.
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