PSP Association

The story of PSP and Tom

My Dad was diagnosed with PSP 14 months ago after 4 years of being incorrectly diagnosed with early onset dementia and depression. It first started with him losing his balance and feeling "drunk" when he was walking. This made him lose confidence in himself. I cared for him at home for two years when his eyesight started to become affected and he could not look down at his feet or to see the food on his plate so eating became difficult. At his request he moved into the most wonderful care home locally to me and I continued to visit very regularly. At this point he was still labelled with depression and dementia despite me knowing he never forgot ANYTHING! It was the lovely care home staff who recommended he eventually get a brain scan and PSP was diagnosed early last year. At last we knew dementia was NOT the problem although we were aware there was no cure. Tom (my Dad) declined fairly rapidly from then and very quickly he lost he power of his voice which was frustrating for him. Last to go was his swallowing and he laterally struggled to swallow pureed food and liquid. I have hated every second watching this cruel disease take away my strong farmer father. He is now at peace and I miss him dearly and will do so for a very long time. Tom died on Tuesday aged 74 years old. :(

11 Replies

i am so sorry. I just looked down at my Bible an found this, Now unto Him who can keep you from falling, and present you faultless before the presence of his glory with exceeding joy.....Jude 24:25...not much right now except to know he is free



So sorry for you and what you and your father had to endure. My husband's voice is changing now and he coughs and chokes every time he eats and drinks. He has gone quickly downhill within the last couple of months but is still able to get around in the house by holding onto furniture and walls. D made it through a terrible childhood and survived the Vietnam War. This morning he said to me, "This is a hell of a way for a warrior to go out." As I went over to hug him, I cried in front of him for the first time since we found out about this devastating disease.

1 like

so sorry for your loss they have found a cure for cancer I pray for one fo PSP very soon


so sorry for you - thinking about you and your family - my dad has been diagnosed over 2 years now - we are getting to the hard to swallow stage - very hard to see. especially as the mind is there. take care of you now


I'm so very sorry for the loss of your dad. You and your family will be in my prayers.



So sorry to hear of the loss of your father.

Watching someone going downhill because of this devastating condition is one of the most painful things we relatives have to do.

Being at peace is so true for PSP suffers.

Take care in the days and weeks to come.



Sending you much love in this horrible time x


So sorry for your loss- I lost my dad 18 months ago to psp and feel for anyone living with and loosing those they love to this horrid disease xxx


Hi. So sorry for yr loss please accept my sincere sympathy yr story is an exact carbon copy of my loss in January of this year And. husband was the same age he was turning 74 in February Everything / the stages of the changes all the same so awful to watch I was able with a lot of help to keep h home till end And isn't the most frustrating thing about it all the misdiagnosis I wish I had the skills to write a book We should have more info for people dealing with this horrendous disease I miss my love 50 yrs together Yu will miss yrs too Time sure helps Oooooooxxtake care of Yu now That's important


Sorry for your loss.



iI m sorry for your loss (my dad died las t September -b nothing to do with PSP) but sad that he si gone - his suffering is now over that u can be sure of

lol jiLL



You may also like...