My mum has been suffering this disease for almost 10 years and my dad has tried to take it on all by himself for most of it. My whole family have read your webpage in dedication to your wife, Patricia. It did help us to understand what mum and dad were in for and helped my siblings and myself to understand the disease and how we would adapt to it.
Unfortunately now about 8-10yrs in we are currently about to lose my mum, Margaret to this horrible disease as she is now in palliative care due to internal complications – all the whole digestion system is failing and parts of it dying. Margaret was a nurse and was very against the PEG so we respected her wishes although not always agreeing to it but it was her decision to make. We have been told they can’t operate or do anything for her except palliative care; we’ve been warned that she may not survive the next 3 to 4 days.
The reason I felt I needed to write to you was to let you know to keep this website going as I had to refer my bosses to this page to understand what my family was going through as since hardly no-one knows about this disease and the lack of quality of life the patient and the carer have. As being a single parent, I needed to rely on my parents to assist me so I could work even though they were going through all of this. Your webpage had assisted me with explaining this, as unless you say cancer, no one understands until it affects their life.
I thank you for it and am very sorry that you had to go through the same. But you did help my family understand what we were up against.
I hope they find the cure one day but at least more research is getting started now than what there was 10yrs ago.