Today my 81 year old dad was given the news that he has PSP. I knew nothing about it until reading things online today. The consultant said that didn't want to discuss things now, ie life expectancy etc and he wants to review in 3 months. Can you advise if this is normal?
Thanks
Pj
I am afraid there is no normal with this illness .There are so many different facets .Some people have a few of the symptoms others seem to have them all.No two doctors seem to agree as to how the illness will progress for some it is a slow decline with plateaus and for others the progress is quite rapid .Contact the PSP Association and ask for their pathway for care ,it is informative and helpful as are the people who run it .But stay with us here and you will get a lot of good advice and support when you need it most .You will make many friends who will help you through the difficult days ahead .
Hi. So sorry about the diagnosis, but welcome to the community. I wouldn't worry too much about the consultant not communicating. I think that was the experience for most of us here. We are given the news and sent off to learn what we can, and then we go back with the questions we gather. Life expectancy varies a lot, and the median, which was 5 years from diagnosis when my guy got the news in 2011, is generally 7 years or more now, although that may be due to improved diagnosis rather than improved care. Hard to say, but there are no effective treatments for the disease and only limited actions to be taken for symptoms.
Many of the folks here lived with a diagnosis of Parkinson's for years before they were told of psp. Was that true for your father? What comes next depends on his current condition, of course, although everyone progresses individually.
Psp is not the worst thing that can happen. We get to hold onto our loved ones, and cherish them.
Hang on. This community is great and we are all in this together.
Love and peace, Easerncedar
Thank you Georgepa and Easterncedar for you replies, kind words and advice.
We are still in a state of shock and I am frantically trying to understand the illness, what could happen, what support I can get for mum and dad etc but my mind is so confused right now.
Dad was not diagnosed with anything before this. I have seen changes in him for about 2 years but it was only in February this year that the gp started to take us seriously and today our lives changed forever.
I will get in touch with the psp team over the next few days.
Thank you again and I will keep you updated
Pj
I remember the shock when we got the confirmation. It is overwhelming. I assume you're in the UK. There is help for you! If you look through past posts you will find lots of information about that. Try not to worry, and do keep in touch. Peace, ec
Pjgil, greetings . I would only add to Georgepa and Easterncedar's post CurePSP.org. It has alot of good info that you can share with your doctor and with other family members who will have only heard of PSP because of your mum. There is alot of info out there ...and alot of info in here...particularly Kevin 1 seems to have all sorts of info for the UKers medical needs...read his posts....
Meanwhile there are several things to do... plan on falls . That means move everything you think could hurt your dad or get damaged if he fell. small tables, rugs, cats....grandkids toys you get it....Plan on plans....who he can call on in a pinch, schedules of who can stay with your parents, respite for your dads carer. If he is still married, make sure that she gets alot of good rest. Make sure she has alot of good carers on board. Your dad is older so he may have other issues. Make sure he has all meds and dr. appts. scheduled and kept. Main idea; keep him: safe/comfortable/healthy; keep you and other carers rested/healthy/supported We can and will be your support. I always give a few verses from the Bible to those first come to this site so I will leave with you, I hope, these words of comfort! Remember , we are hear for you...
AVB
God is our refuge and strength. a very present help in trouble Psalm 46:1
Blessed is the man that endureth temptation for when he is tried, he shall receive the crown of life, which the Lord hath promised to them that love him... James 1:12
Sorry to hear of your dad's diagnosis. It is frightening, our consultant told us to look up PSP associations website and we would find a lot of info there. We did and then we found this forum. It is invaluable, so many at different stages and through their experience can give expert advice. Nanny857
sorry about this - we were also very upset with the consultant, we had to change him and the second one was just as bad, albeit in a different way - if you are not comfortable with yours and you can seek another's advice, please try and do so
I would recommend reading up as much as possible - this is a good start: pspassociation.org.uk/
And read up on this forum and a couple of forums of facebook as well
One of the main things to find out is your dad's opinion (if he can understand and communicate at 100%, which I doubt he is) and yours and your family's on longevity of life vs quality of life and make sure you find a consultant who agrees with you - also, be prepared to have to move your dad to a facility, because someone will need to be next to him 24X7, literally - or have 2/3 shifts of nurses/attendants looking after him
And of course, we are all here on this forum - please feel free to ask anything, no matter how difficult, embarrassing or uncomfortable
My wife was first diagnosed with Parkinson's about 8 yrs ago but to be honest we have had two consultants in that time and both said that they not convinced that it was. Parkinson's, the second thought it might mas but that was ruled out. The second consultant told us last year that it was psp and said she was really sorry but then but started to explain some of the problems to us but not to the extend I have since found out and yes this site does help you express yourself without fear.
My husband was also diagnosed just before his 80th ., in 2013. Like you we had noticed problems and I had assumed a brain problem, eg. stroke. Our neurologist told us to look on the web site. He is actually good at answering direct questions but I was so shocked I didn't know what to ask.
Most of the realities I have learned from those on this site.
They actually can't tell you how it will be because it is different for everyone. What you need to know is how you can be helped now and prepare for later stages which are inevitable in time.
Welcome and a loving hug, Jean x
I am completely taken a back by everyone's kind comments and support on this site. I have been reading up on the psp site as well as here but there is just so much to take in.
The family is in a numb, I cant believe that this is happening to us state at the moment. We do need to sit down with Dad and find out what he wants from his time left and what sort of treatment he wants. We are lucky at the moment as he still has speech but with a slur.
The end of life is not the elephant in the room with me as we all have to go sometime, its the cruel way that its going to happen. How to my sisters & I talk to my mum and dad about that. At the moment dad is completely oblivious to the progression and end result. My mum is 76 and not mobile so her caring for dad is going to take its toll.
Thank you again to everyone, its difficult not to feel alone and isolated with this diagnosis however you all make it slightly less lonely
Pj xx
81 aww bless him! Sorry to have to welcome you here, but you'll find the best friends ever that will support you and listen and try to help at every opportunity!! Don't worry too much bout the consultant (I did before I knew what other help was available) the consultant in my opinion gives you the diagnosis and you do the work from there, i.e., Psp association, hospice, neuro team, district nurse GP etc plus you now have us!!!!!! Big hugs and keep posting x
Having lost my lovely wife to PSP this week 22July2021, aged 85 years old. I agree with all correspondents here. The problem with Consultants, they don't think normal people can absorb the information of this terrible illness so 'Waffle' through explanations. I can now see my wife had symptoms for about 2 years, last 9 months the disease symptoms got worse. the body got weaker and a heart attack finished her. The coroner cant issue death certificate as they cannot find cause of death yet. This is hard reading but must be realised, as I had to.
I'm so sorry for your loss. It's a dreadful disease. Nothing can ease your grief except the knowledge that she is no longer suffering. Big hug from Jean x
Thank you soo much, every time I think of her I cry, its embarrassing.
Don't be embarrassed its normal. I went around with permanently wet eyes for months. Sudden memories still bring tears to my eyes. xx
Going through psp with a loved one is terrible, but then you have to go on. I offer my deep sympathy. Surviving is very hard. Take care of yourself
I'm feeling very sad today :(
He said, "I'm dying today."
1 year today
Sad Day Today
