Respiratory Physio therapy

[Morrison10]

For the last 18 months I’ve been paying a physio, who comes to my home twice per week, does good job and clears my lungs completely each time. I feel better. I know respiratory physio is listed in NHS aims for adults with PCD, does anyone actually get it, and does it depend where we live. Im 86 next month, never had it before, wish I’d had respiratory physio years ago. Doing own postural drainage together with lung slaps, helps, but can’t reach all areas!

[Iram_sa]

Hello there,

Yes I do have regular physio sessions with the team at royal Brompton hospital in London (adult PCD team) Because of covid its been video sessions where they go through and check my technique with me. Sorry I haven’t checked where you are based and if it’s possible for you to be referred here-as they are an excellent team.

To be honest I am surprised that you are still doing the postural drainage and “slaps” as that is something the physiotherapists stopped and discouraged years ago. There are other techniques they encourage especially as it’s more effective (I seemed to think so) and it’s something you can do without being dependent on someone else. Its called autogenic drainage (there are video clips out there) bronchiectasis.com.au/resou...

It really has done wonders for me. I can do it anywhere and anytime I feel particularly chesty and idea is to sit up and do it rather than lie on the bed.

One physiotherapist described as squeezing toothpaste out from the bottom when it’s finishing to get paste out from the top and honestly that’s how it feels like when doing this physio!

Hopefully this has been of some help. Happy to answer any questions.

Take care,

Iram

[LD28 Administrator]

Hi,

Please email me and I will send you some information about how to be seen under the adult service for those with PCD in England: [e-mail]. If you live in other UK nations, this will work a bit differently, so do let me know in your email.

Unfortunately I don't think in most cases that there is the resource to have home-visits from physios but this may depend on a case by case basis, and I would imagine age would be a compelling factor in this!

Best wishes

Lucy

Chair - PCD Support UK

[LD28 Administrator]

Hi,

Please email me and I will send you some information about how to be seen under the adult service for those with PCD in England: [e-mail]. If you live in other UK nations, this will work a bit differently, so do let me know in your email.

Unfortunately I don't think in most cases that there is the resource to have home-visits from physios but this may depend on a case by case basis, and I would imagine age would be a compelling factor in this!

Best wishes

Lucy

Chair - PCD Support UK

[Morrison10 in reply to LD28]

Hi Lucy and IramThanks both for your helpful responses. I live in Sutton Coldfield, north of Birmingham, and since diagnosed with Kartagener at age 33, have been patient at University Hospital, Queen Elizabeth, Birmingham. Have seen number of consultants, two years ago as was not happy with consultant then seeing, paid to look on line at qualifications and interests of all respiratory consultants in area. Found Dr Sullivan who knows all about PCD and is great. She prescribed Nebuliser, but said regrettably couldn’t offer regular physio. I was shown how to do postural drainage and curved slaps at gp surgery many years ago, and find it helps. Tried to open your link, didn’t oblige, will try again later! I’ve been to Leicester Royal Hospital, children’s dept, when Professor O’Callallaghan did test and confirmed at age 84, I do have PCD. I’m due to go there in July for more tests, but as been unwell last few months, might defer it. I keep own antibiotics, and previously have done six courses of I.v. Antibiotics at home, helped by my late husband. Best wishes, hope we can avoid Covid.

[Iram_sa in reply to Morrison10]

Sorry to hear that you have been so unwell. Hopefully you are well enough to see the doctor in hospital as might be good for you and them to see how you are-and possibly refer you to physio too.

If you type in autogenic drainage on Google or YouTube you might have better luck (plus get an idea what it is)

Wish you better! It’s not nice being so unwell.

Take care of yourself

Iram

[Morrison10 in reply to Iram_sa]

Hi Iran and LucyI’ve looked at the autogenic drainage video, and sat trying to do it. Think one of my problems is broken flattened nose, suffered from flying debris whilst growing up in industrial Birmingham during war. Went to bed every night in cold damp air-raid shelter dug into garden. Land mine came down near by and part of shelter collapsed and hit my nose. When I was in my 40s made many requests of ENT surgeons who drilled holes in nose, to rebuild it, but always refused and told not to ask again. I can only breath through my nose little bit, and am constantly blowing it, often without result, although I know my sinuses are blocked.

I’m not well enough to go to Dr Sullivan’s PCD clinic on Monday, but will have telephone consultation with her. Even though I’ve only seen very few people, I’ve done a Covid test today at home, just In case was why feeling bad, result negative.

Thank you both for your help, stay safe and well.

[LD28 Administrator]

Hi,

Please do email me - there is a new adult PCD clinic that will be set up at Birmingham shortly and should give a much more comprehensive service than you may have received in the past.

Happy to have a chat and to put you in touch with our adult PCD reps!

Best wishes and stay safe,

Lucy