Heath + Tech + PCD

[N123]

Hi all,

I hope everyone is keeping well

I'm interested in technologies that fellow PCDers are using to keep well or manage their condition. Does anyone use anything? This could be apps/wearables etc

I just want to see if there is anything out there that could help me.

Thanks N x

[LD28 Administrator]

Hi N,

My new year’s resolution was to keep a health log on my phone. In the past I have found that I misremember how well I’ve been or when I started feeling ill etc.

I don’t really think that wearables would be any more useful for me than the average non-pcder. I guess the only exception is that you could set the Fitbit (or equivalent) alarm to remind you to do physio.

In terms of equipment and physio, good old fashioned techniques seem to work best in PCD (rather than the vest). I think the best thing I ever did was to buy a baby bottle steam steriliser to sterilise all my equipment in more regularly (e.g nebuliser, neilmed sinus rinse bottle, acapella/pep mask/pep valve). I just leave it on my worktop and it only takes 3 mins to do. Slightly lazier than a pan of boiling water but at least it means I do it!

Thanks

L

[fcfilice]

I personally have been trying the Aerobika device and a massage device made by Walsh for daily chest physio assistance. Also I use NeilMed sinus rinse with distilled water daily, and my husband helps me as well. I find the massage device made by Walsh works the best. The Aerobika device aids in loosing up thick mucus especially in the morning and I can exercise longer but at times I feel as if I have more bouts of of Atelectasis when I use this device. I keep thinking that the scar tissue (Bronchiectasis) areas are less elastic and ballooned like so when the Aerobika aides in getting ride of the thick infected mucus then that area tends to collapse for a short time. I do not know if this is good thing or bad but if I am having a real hard time coughing out the thick mucus and can not breath then this device does the the job. Also I have not found a app for PCD patients but am interested if there is one.