My dad was diagnosed with PSP a little over 2 years ago after 2 major falls down the stairs at my parents home.

He had many broken bones, contracted MRSA but fought through it all and currently resides in a nursing home. I've read on many of the threads concerning the "final stages" and I have also done quite a bit of research. It's complicated to understand what his effects from the PSP are and what are results of the 2 falls. Dr's have said that the falls caused the PSP to progress exponentially but I still do have a clear idea of where he is with the disease. He can no longer walk and struggles to get a work out. He has had a feeding tube for the better part of a year and a half. He has difficulty swallowing but he does still eat some soft foods. Can anyone point me in the right direction if there is one to fully understand what stage he is in. I do not live close to home and it is extremely frustrating not fully understanding the progression of the disease. Based on others descriptions on here, he has been in the final stages for over a year now. Thank you in advance for any information or advice you can provide.

[elizalou1710]

Hi sorry to hear your dad has Psp , mum has Psp and I would say she is in later stage as opposed to final stage (but this is just my assessment ) she is very constricted and only able to communicate by squeezing my finger . However she has had a peg for 2 yrs and I know she would not be with us if she did nt have it as she can't eat or drink . What I try to do is concentrate on what she can still do like listen to her favourite music , and with the TV correctly positioned we are currently watching Downton Abbey . I am lucky in that I can spend several hours most days with her . Best wishes Louise

[carolinesimmons]

Sounds a little like my husband's predicament toward the end. I read early on a quote from a hospice medical director who said "a PSP patient will always qualify for Hospice care but will always outlive that prognosis." My husband was in hospice care for 9 mos. when he died of heart failure. Co-morbidities certainly play a huge role in end of life prognoses. After being in a late stage of PSP, I had expected him to live 1-2years. He died within 48 hrs. If you want to see him, go NOW, don't put it off! He is only going to get worse - and could go quickly.

Caroline Simmons

[jimandsharynp]

Drue, My response to questions about "stages" is always the same. The stage doesn't matter. Why? Because a patient could get aspiration pneumonia and die in ANY stage. They could have a bad fall with head trauma and die in any stage. Time is better spent on caring for the individual as best you can. Remember also that PSP is NOT a one-size-fits-all disease. Each patient can and usually is different. My wife just passed away peacefully with only a week of warning. I thought we had at least two years left but death came suddenly from PSP (no other causes). In my view, stages don't count worth anything but care and love are better places to spend your time. It's also my view to not worry about what's coming next. You can't change it so why worry about it? There will be enough time to worry IF and WHEN what's coming next happens. These are just my opinions and what really worked well for my dear wife and myself. Believe it or not we didn't discuss the disease after the first year after diagnosis. We both realized it would run its course and never spoke about PSP or it's symptoms or her future with PSP. I realize that is hard to believe but it is true. It gave us peace in a troubled time. Take care my friend and I wish you and your family the best in the fight with PSP. You are a true warrior as is anyone who encounters and deals with PSP. Jimbo

[MelvynS in reply to jimandsharynp]

What a brilliant reply. As me and my sister have learned, whilst there are some common factors everyone seems to suffer differently and progress at different rates. You just have to face each challenge as it arises, which I encourage you to share on this site. Many healthcare professionals in the community do not really understand the disease and better advice is forthcoming from those who have already worked through the problems. In my brother-in-law's case, he had a PEG fitted over two and a half years ago to facilitate eating and drinking, and he seems to have plateau'd out, albeit in the intervening period we have had major problems with constipation (having to vary the dose of senna day by day as the situation goes from one extreme to the other), and with him choking on his saliva/mucus during the night (which we seem to have overcome with sleeping him on his side in the "recovery" position). Melvyn

[quickgel]

This is a really difficult one. I was totally unaware until a few hours before my wife died. A couple of days earlier I had called the district nurse as I had noticed the starting of a pressure sore and it was agreed to upgrade the type of air mattress, there was no mention of my wife being so close to death at that time. A friend, who was a hospice nurse, called in unexpectedly a day or so later and suggested I immediately called the family and within about 3 hours Margaret had died. How could I not have known? I can only think the day to day changes were so small I was too close to see them, Margaret slept a lot and the ability to communicate was almost zero. I was also told that diagnosis to death was likely to be 7-10 years and this was only the second year from diagnosis and it was the last thing I was expecting. I don't know how this might help, other than to demonstrate the varying nature of this disease which is a common thread through many of the posts on this site. There is no way of knowing for sure what stage your Dad is at or even if there are distinct stages, so Louise's advice to make every moment count makes perfect sense to me.

My very kindest regards, Jerry.