Trackiotmoy & Peg/rig

[staceystella]

Hi all,

Does anyone in the early stages have a trackitomony or feeding peg/rig??

My father is not in the latest stages with his PSP but his food was going straight on to his lungs for nearly two years then he started aspirating and then taken to hospital suddenly and diagnosed with aspirational pneumonia.

He has been in hospital touch and go saying he wouldnt pull through and a member of staff in HDU/ICU wanted us to end his life but we gave dad the choice and he wanted to fight it. 9 months later he is still here he has a trackitomy and a feeding rig/peg and is coming home on his wishes with 24 hr careers which will be very intrusive to us but who cares its what he wants, he's still all there upstairs and can walk with aids.

I await your feedback.

Many Thanks

[dllera]

Hi Stacey - I knew of one PSP person that was in the "earlier" stages who would have benefited from a track or a PEG but opted not to have one and passed away quite early on -he could walk with aid and was able to still use a communication board-but this was his own choice. I commend you for letting your dad choose his path. We like you had many people in the medical community suggest that we should just let my father go and not treat him or suggest that somehow we were cruel for letting his suffering go on - - but it was never us choosing the path -it was always up to my dad and we would have followed what ever direction he wanted to go -even if that meant losing him. The fight gets harder with the doctors and hospice as you get further along but always fight for what your dad wants. My dad passed away peacefully at home on his own terms. I have not one regret or one bit of guilt because I followed what he wanted. I watch others in my family struggle with their guilt for many other reasons and I can truely say that I am free of that and it has allowed me to love, miss and remember my dad without any second guessing. Stay strong and your dad is lucky to have such an advocate!

[kpsmail]

About a year back I was diagnosed as having PSP. Luckily i do not have swallowing problem so far.I go to acupuncture session every day.It is good. He says PSP can be cured

[SheilaN in reply to kpsmail]

Has he said how PSP can be cured? Please don't build up your hopes. Do you see a neurologist regularly?

Take care

SheilaN

[andrew in reply to kpsmail]

I think that's great what you are doing. My Mum has PSP (she first noticed symptoms about 13 years ago now), and I also think it can be cured, though I tend to think more in terms of remission and mitigation of symptoms than actual 'cure'.

All the best,

Andrew