Hi Everyone, COPD AT 50

Hi, I was diagnosed with copd on Monday 06/10/2014, it was a big shock to me and I broke down in tears, been a smoker for over 35 years, no longer smoke, its very hard but I will get there. at the moment I am in receipt of income support along with incompacity due to be suffering from angina, and now I have copd, 40%, can I claim PIP and who would be able to help me complete the forms and what do I say to them of the phone as to why I am claiming. I also suffer from depression, hip and knee problems

37 Replies

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  • Evening.

    Your obviously very upset as it's a shock, so first things first. Don't Google anymore because I can guarantee you have, you'll just frighten yourself it's nonsense as this illness is different for everyone. Get your medication sorted and take it regularly, ask your GP to send you on a Pulmonary Rehab, they will teach you to exercise safely and tell you about diet depression etc. As for P.I.P I receive so ring BLF helpline Monday for advice, but when you receive the forms do not fill them in yourself, I went to a community project who helped with mine.

    Your not alone now there is always someone to chat to, I promise you'll get on with life just at a slower pace.

    Kim xxx

  • thank you so much Kim, yes your right did google and yes scared me by what I had read. BLF phoned me yesterday to ask how I am and how things are going and explained to me whats what. I never talked about money or anything, they said that I should put a claim in for PIP. and I said not at the moment as I need to get my head around things, and I said I will ring them back on Monday. my wife as been a rock and a great support. went out in the car today and when we got home we could not drive up our road as a truck had broken down, so we left the car and walked home, it was only about 50 yards, by the time I got throu my front door I was gasping for air, all the colour had drained from me, and I had dry mouth and lips, my wife sat me down and made me a cuppa, I then felt really hungry, so ate a mars bar, and 3 biscuts, 20 mins later felt really tired and went to bed and had 2 hours sleep. god I hate all this and wounder what will be come of me. Mike xx

  • webmd.boots.com/a-to-z-guid... hi hears a link on breathing and exercises, and don't worry , have you had your jabs and your wife will need to have them, there doing them now, so ask for them, as you learn to understand what you have it will get easier , so don't google, anything you post members will be on hand with advice, theres always some one on 24,7. all the best cheers.

  • thank you twiceshy3

  • Hi Mike nice to meet you. It is a shock top receive this diagnosis but there are many on here who are worse and still going strong. There should be a disability organisation in your area. If you phone or google them they will provide the PIP form and help you fill it in. Good luck x

  • Hi Mike good to meet you welcome to our merry group,loads of information,support and humour . So sorry about your diagnosis it is difficult to take in at first.As mentioned a PR course will help tremendously not only made to measure exercises but talks about anything and everything to do with our lungs plus it's really good to meet others in the same situation. So get your doc or resp nurse to refer you ASAP as depending where you live there can be a little waiting list. Again as already mentioned life carries on as normal just at a slower pace. Exercise,diet and stopping the cigs are your greatest friends and don't forget to smile and be positive. We are all here to help and support you so any questions just shout out and ask . One day at a time allow yourself some time to get to grips with it all. Keep in touch and let us know how things are going. See you soon Mike :) Janexx

  • Hi Mike. The first thing is don't panic. I was diagnosed 14 years ago at the age of 58 and I am still going strong. Your local county council should have a Welfare Rights deparment to help you with the multitude of forms. You could also try the Citizen's Advice Bureau in your area although most of those are understaffed and overworked. If you get stuck just come back on here and someone will help you out with any questions you may have. Good luck.

    Bobby

  • thank you Bobby, I will do and I will make some calls on Monday

  • Firstly I would look at ESA and then PIP. ESA is coming in a little quicker and what ever the forms say for PIP it seems to be an average of 13 months before decisions.

    Either way get some advise for your Local CAB or AgeUK (I think you need to be 50) The forms and how they are answered are the key to a winning claim.

    If they ask you to fill in the form with them on the phone you could say all the wrong things. Get them to send it or download it.

    Have as much medical evidence ready to send with the forms and anything after the claim date will not be considered. Once the forms are filled in send them either by recorded delivery or though the JSC they have to book you in and it is logged. (They have a habit of saying the paperwork never arrived if posted)

    You have to look at your bad days for the answers because that is when you need the help.

    I am going though the descriptor's and what they mean and it is hard work and I now see why they refused me on lack of points. I have got though 9 pages and another 92 to go and I have seen 4 more points I would of scored already!

    Keep us updated

  • thank you, at the moment I receive income support for myself, and my wife, I also receive incompacity because I suffer from angina and other health problems, and now I have copd and was told it prob started some 4 years ago but I have left so long as I just put my breathlessness down to being unfit and smoking. I was informed that its worth me putting in a claim for dla/pip but it say that you must have the illness for some 4 months, and I was only diagnosed last Monday, but had it for a many,many months prior to me seeing the consultant, and maybe having it some 4 years before

  • If you are on IB then I am surprised that they have not sent you a esa50 form then as they are moving over to ESA from IB

  • only if you have been on IB after a certain year, mine was before they brought it out

  • Hi offcut, yes I am 50 years old, and I was told that when I ring pip they will ask me the questions on the phone, so you would recommend me asking them to send me the form and take them to ageuk? I have spoken to ageuk and they said they would help me, so I feel abit easy now speaking to you guys, thank you so much

  • I am afraid we do have a habit of making out we are better than we are, when talking to someone else. I did not realise how many aids I am using now to help though daily chores. Since my spell in ICU my Short term memory not as good as it used to be, so my wife has to remind me of things I need to do. It goes on and the last PIP form I filled in I did not even mention them.

  • yes get the forms and fill them in but remember they are not interested in your illness (all of them) but how they affect you in your day to day life they want to know about the things you can no longer do and how much help and support you need...you need to base it all on your worse days

    i get pip and esa and wasnt asked on the phone they just send forms but it took ages ...up to 6 months for it to be sorted out

    mandy

  • thank you mandy, I think I will try and get some help in filling the forms in, and yes your right, they don't care about what illness you have. when I ring Monday and ask for the form can I just ask them to send me the forms or will they say no it must be filled out over the phone by them?

  • they just take a few details and send you the forms...its impossible to do it over the phone there is so much info needed and i would suggest getting supporting paper work off your gp etc because they do ask for it and although its not essential it can move things along quicker

    i think its a good idea to get someone to help fill them in with you

  • thank you so much

  • Hi, it took seven months for the ATOS assessor meeting for my PIP claim he was very pleasant and very thorough, I had filled in the forms myself and described my very worst days on them, by the time of our meeting I was so much better due to being put on azithromycin however outcome was I was awarded PIP, only took two weeks for decision so as you can I imagine I was very grateful and relieved :)

  • good on you, glad things went well for you, and I hope your doing well. I guess I will have a look at the forms and see what is what, but prob will get help to fill them in, take care x and thank you

  • oh ps

    welcome to our family there is loads of support on here and dont forget your wife can chat to us too x

  • Definitely do NOT do this over the phone. Get the forms, look at them carefully, get someone knowledgeable to help you fill them in and base the answers on your worst case scenarios. Trying

    to answer over the phone off the top of your head just confuses you and the person at the other end. Let us know how it goes.

  • thank you dragonmum, I am ringing them on Monday, and I was told they will ask me a few questions then they will decide there and then if I can claim pip, don't know if that's the case or not

  • Hello, I'm new here, this is only my second post.

    I'm 44 and have had COPD for around 6yrs, I know that seems young, but I've also had other "older conditions" such as osteoarthritis since I was 22, pernicious anemia since I was 28, angina since I was 41, and I've had fibromyalgia for around 12yrs (diagnosed) my lungs were never good as a child and I suffered from bronchilitis, so it was pretty silly of me to ever smoke!

    However i still continued to smoke from age 14 till I gave up using ecigs 6mths ago - so please, if you're still smoking, please give the ecigs a go, they will really help you, I can actually have a conversation now without choking and coughing.

    I know giving up won't cure the COPD, but it will most definitely help slow the progress of it.

    I wish you all the best.

  • good advice toad, thank you, hope your doing ok

  • Amen to that ToadFlax - glad I'm not the only enthusiastic vaper on H.U!

  • Welcome to our home I'm sure you will learn loads hear. I was diagnosed at the age of 42 I gave up smoking put on loads of weight felt worse then worked on loosing the weight.

    I have lower back problems as well as COPD I try to go swimming a couple of times a week as due to my back problems I can't exercise on land.

    Now the question on PIP both PIP & ESA are very difficult to get I would recommend you get someone to fill in the forms for you and look for a local branch of breath essay group in your area they mint know who can fill in the forms for you.

  • thank you, sorry to hear about your condition and hope your still strong and doing well. ageuk said they will help me with any forms, plus BLF are going to have a chat with me next week.. thank you for your help, take care x

  • I don't think BLF will fill the forms in for you they do have benefit advisers though and benefits are a mine field so all the very best on that one

  • BLF was going to give me some advice that's all,

  • Good I did ring them and they gave me some good advice I hope you are successful with ESA & Pip

  • Mike, Fantastic that you stopped smoking. This will add years to your life. Tha tyou are on income support is good to, because you have time to reflect. The helpline here or a Citizen Advice Bureau will be the best place where forms can be filled for you and with you being there.

    If you could, do some gentle breathing exercises every day, of this type:

    This will give you self-confidence. Ask your GP to refer you to a pulmonary nurse team. Teh nurse will explain all about your illness and give you tips to cope with depression and shortness of breath. She may even enroll you on PUlmonary Rehabilitation which is a set of exercises and general knowledge about drugs that help lung diseases. keep you head up. I had bronchiectasis for 20 years. I have been very ill, but I have known, like now, wonderful periods of well being. Take courage.

  • thank you helingmic, I was only diagnosed last Monday by a consultant and she said that she will get me into pulmonary rehab, and support groups. I have not been to good all week to be honest, and yesterday I had to leave the car parked some 50 yards from my house as a lorry had broken down, I said to my wife I will leave the car here and just walk up the road, bloody hell, that was the longest walk ever, I got in doors and was puffing and panting and all the colour and gone from my face, my wife made me a cup of tea, and I was starving and landed up eating a mars bar and 3 biscuts, I felt really tired and had to go to bed and had 2 hours sleep. I feel better today and feel like I can do a lot today, but no I can't

  • At the moment, mollycoddle yourself. This is the best way to get better when you feel down. When you feel up to it, you can start gentle exercises and walk slowly. One day at a time will be more beneficial when you do it gradually. Look after yourself. I have been through your experience. It will improve in time, and you will know what you can do better then. Keep your courage and faith in yourself.

  • Hi, a warm welcome from me too! Everyone has given you such great support and advice and you are obviously taking it all in. I would just add that the PR course will be great for you. It helps in so many ways including teaching breathing tecniques so you can deal with experiences like your recent one of the 'long walk home' and they also really study the answers to their questionaires so be sure to be honest about how you feel. They are able to refer you for emotional help/support.

    The very best of luck to you :)

  • hi Iam 57 and was told I had c.o.p.d 2years ago and find it hard to breath after a short walk I all so have had a failed spinal fusion opp and was told last year that I have spondalitis in my spine.iam in the process of changing from d.l.a and I need help filling in the pip form I went to c.a.b.was told there to busy dose anyone now anywhere I can get free help to fill the form thanks .les

  • Hi, it might be an idea if you copy your reply and put it in a new post - I think more people will see your question re DLA. I'm sorry I can't help. P

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