Why I volunteer for ILFA
Prior to my Dad being diagnosed with Pulmonary Fibrosis, I had not heard of it.
Illnesses such as COPD, emphysema were things I had heard of and I was sure that one of them would be the diagnosis for Dad. However, after all the tests, the consultant told Dad he had Idiopathic Pulmonary Fibrosis and as I had no idea about this illness, I went straight to Google!
And that is how I found ILFA – when you enter pulmonary fibrosis ireland into Google, it is the first result.
So I read the articles, newsletters and watched the videos and found the information invaluable in me being able to understand and manage emotionally, what was happening to Dad.
I also picked up the phone and called Gemma who was just wonderful with her gentle manner, understanding and advice. Learning that this was a progressively worsening terminal illness was very emotional and knowing that Dad knew his fate was difficult to cope with, but Gemma was so understanding, caring and empathetic.
I introduced my Dad and my family to the website so that we could all be informed and ‘on the same page’. Dad has since joined in on the zoom physio sessions (which he thoroughly enjoys) and he has also attended the Patient Information Seminars which he has found very interesting and informative. Being informed helps Dad to feel more in control of his disease.
Living in the UK I was not able to help Dad on a daily basis and wondered what I could do to help and support him. I also wanted to thank ILFA in some way for all the information that they provide and the care they have given me through my chats with Gemma.
My work background is in administration and I currently work with a University transcribing Zoom meetings, so I suggested to Gemma that I would be willing to transcribe the Patient Information Seminars if they thought it would be a useful resource for them to have the meetings typed up. Gemma was delighted and I have typed up two seminars to date. This also helped Dad, as we then had something in common to talk about and we were able to discuss various topics raised by the experts such as home improvement ideas from the Occupational Therapist seminar.
To be honest, it is of huge benefit to me to do this work as I learn so much from listening to the experts impart their knowledge. And if my volunteering effort helps ILFA and other IPF sufferers in a small way I am happy to ‘give back’ to the organisation that has given so much to me and my family.