Top tips for 10 year old physio

[BessH]

Two years post-diagnosis twice daily physio is a source of constant conflict between my daughter and I. She understands her condition well and eventually always does physio but often after rounds of arguments and tears. The relentlessness of physio that won’t ever stop has really sunk in and she is angry, frustrated, sad and also a bundle of tween hormones. We have a wonderfully competent and supportive medical team with physio visiting us at home next week to help. For those who have gone through similar difficulties what are your top tips for helping with arguments about physio and the perceived unfairness to a child of their diagnosis.

[fionac66]

Sorry to hear this ... we had two kids with PCD and can feel your pain. We used to try and do physio with them when we could and watch a favourite tv programme with them (Modern Family was one!). We always used to try and explain that they would feel poorly if they didn’t do it - as they got older they did understand this more.

[Morrison10]

Hi Bess, I’m a 84 year old with PCD Kartagener. Not diagnosed until I was 33, after years of bronchitis, pleurisy, pneumonia etc, particularly during war when I spent every night in cold wet air raid shelter, and suffered broken nose when bomb exploded nearby. This was before antibiotics became available. I generally cannot nose breath, despite having several ops, including having holes drilled, and experimental three weeks of daily sinus wash outs with penicillin and eferdrin which destroyed linings.

I recently went to Leicester for nasal test, and smiled when finally confirmed have PCD. I think it’s most important to keep active, even if have to rest sometimes, particularly when been gardening. I do postural drainage several times a day, including when go to loo. Found this only way when working full time in office, cannot sit at desk thumping lungs. Suggest you encourage your daughter to do her own, and stay positive. Yes it does restrict what you can do, but there are ways around, eg I’ve heard PCD people regret they cannot scuba dive, but there are places where the reef is in shallow water and I’ve snorkelled with barracuda, sting rays and lots of colourful fish. My husband was amazed, said it was as good as he was seeing when he dived. I’ve also ridden my own small motorbike, very useful for parking at hospital. I Avoid if possible places such as hospitals in winter months.

I hope this helps, and good luck.

[Morrison10 in reply to Morrison10]

My reply was for others in the group, sorry didn’t address it fully

[BessH in reply to Morrison10]

Thank you it is lovely to hear from an older adult about a life well lived with PCD, it is incredibly uplifting to hear your experience x