Joan Johnston, national co-ordinator, COPD Support Ireland, speaks about a day in her life.
I’m up early as my two-year-old son Leo has Angelman syndrome and doesn’t sleep much as a result.
Between 4am-6am I give him his meds and we have breakfast together. Leo was diagnosed just before his first birthday, he is tube fed, has epilepsy, delayed development and sadly will never learn to talk.
Over breakfast, I check my emails and follow up on anything urgent. Chronic obstructive pulmonary disorder is a progressive lung disease and would be in the high-risk category from Covid-19.
My four-year-old-daughter Ella and my husband Dave surface. Dave and I take it in turns to do the early starts. Thankfully a paediatric nurse comes three nights a week.
Dave starts work at 8.30am. Like everyone else, Covid-19 has changed how we work. I spend the morning with the kids playing. Play has a therapeutic approach with Leo, teaching him to sit, stand and communicate.
I’m a physiotherapist and had been practising in a hospital, but took carer’s leave last year to look after Leo. I returned to clinical work for a while but it’s very physical so I gave it up again to protect my back and ensure I could look after Leo. This clinical background stands to me in my current role.
Between noon and 2pm, Dave takes a break from work, and I knuckle down, making phonecalls, returning emails and working on funding proposals. I’m currently working on a project to facilitate virtual meetings for our 33 member groups. Exercise is a hugely important part of living with COPD and because of this pandemic, our groups are unable to meet physically.
Dave finishes work and I resume mine, touching base with charities like Age Action to see what we can do to get our groups online. Siel Bleu has Facebook live COPD exercise classes, but the age group we support rely on more traditional methods of communication.
RTÉ’swhere they go through gentle exercises to keep people moving is great for our members.
We’ve just prepared new packs called 'Cocooning with COPD' and I’ve been liaising with volunteers to get the packs out. They are available to download at www.copd.ie or can be ordered for free postal delivery by texting the word COPD, plus name and address to 51444 (standard network charges apply)