Life expectancy

[acorneater]

My wife was diagnosed with P.S.P.in 2016.In 2017 were were told that sufferers life expectancy was an average of 7 years,I know that all cases are not the same but does anyone else know different? Acorneater.

[Hidden]

My husband is going into his 10th year since symptoms started,and after looking back I belive he had fore more then that,its is a long tough road.Get all the quality time activities in sooner than later.My husband is still very aware of what's going on but his ability to participate has gone.He is 66 years old.

Not sure if this will help or scare the he ll out of you

Dee

[Melhukin]

We found my dads hospital paperwork, it dates back to 2011 when he spent a week in hospital for tests. He had been misdiagnosed for a few years before that. My dad is at the end stage and still suffering. Too long to suffer.

[Hidden]

Larry’s physical therapist told him she knew someone who lived 14 years. We were told 7 to 10 years. Thinking back Larry began exhibiting symptoms a decade or more ago. He still in pretty good shape for this disease.

[Dadshelper]

Don't worry too much about the averages (I know that's hard), plan and do things you always wanted to now. It's not so much about the end getting here as the journey, these are progressive diseases that typically get worse as time goes on. Take up a new mantra Vivi per il Giorno, Live for the Day.

Ron

[Javan]

Stuff the average , just carry on as normal and make changes as needed. It makes for a better/happier life.

[doglington]

Its hard to reply to this because diagnosis is so difficult and I suspect often missed. Chris was diagnosed 2013 but had had symptoms for 3 or 4 years. He died Oct. 2017

I agree with the others. Make the necessary plans about future care but live for the moment.

I always said that its going to get worse so how do we manage now.

Sense of humour essential !!!!

Good luck, love Jean xx

[NannaB]

I agree with Javan do as much as you can to make happy memories now but make changes a bit before they are needed so when things go further down hill, you are prepared. My husband only had two weeks when he couldn’t have a shower as the wheelchair accessible wet room was finished two weeks after he could no longer use our bathroom. It was weeks in the making. We got a W heelchair accessible car while he could still get in the front seat so when he suddenly no longer could, we were prepared, etc etc.

My husband was diagnosed in September 2010 and given 5-7 years. He died at home in October 2016, 6 years later.

XxxX

[rriddle]

Depends on when symptoms began and what type of PSP she has (Richardson's syndrome, PSP-parkinsonism, or one of the very rare forms).

[Pavaga]

Acorneater,

I agree with the group that we should take one day at a time considering we all are mortal and the fact we are healthy today does not guarantee we will live longer than our love ones with PSP. But I do think it is very important to do a good planning that will make this journey a little easy such as accommodate the place where we live for a disabled person, to save some money for extra expenses that will come for sure, hire a nurse if budget allows it, give away things that are not necessary and prepare ourselves to accept mortality.

I do want to mention, that Dave, my husband, has deteriorated significantly in the last 3 or 4 months. Now I help him getting dress after his shower and at night to put his PJ. Vision is pretty bad and choking.

All I can do is help as much as I can with love and take one day at a time and I take time to be outside of the house doing few things that I love.

My desire for David, for every person in this group and for every human being is to have quality of life... It is not how long we will stay here but stay here with quality of life and love.

Receive my love in this journey, Patty

[nayook]

My husband seems to be deteriorating faster than most. He was perfectly well in 2015, showing some early indications of a problem in early 2016, though our GP didn't agree. By late 2016 we had a PSP diagnosis. Now those treating him feel he is in the late stages. Do as much as you can while you can and let the detail take care of itself. Be positive and shower your wife with as much love and kindness as you can. She didn't ask for this and you'll both feel better for every effort you can make.

Hugs. Lynne

[Kaylewis]

My mum lived with PSP for definitely eleven years, but of course was probly a bit longer.

[HilsandR]

The way I see it, Acorneater, is that once we get a diagnosis and realise what's ahead of us, we do have the opportunity to tick a few things off the bucket list before life becomes far too difficult. My cousin's husband, a fit and healthy man, literally dropped down dead on 30 December '18. Natural causes according to a postmortem. I think that screams that regardless of our situation, we must live in the moment and a bit corny, I know, live each day as if it were our last. Thankfully, my husband and I did manage to fulfil some of our dreams before he died, and it's changed my way of thinking about life, I'm gonna fill every minute of it and enjoy living In every moment. Put thoughts of life expectancy in the bin and enjoy what you can with your wife. Best wishes, HilsandR

[Tunupup]

7 years is about right from diagnosis.

[Bhakthan]

PSP does not have a definitive diagnosis! Much of it is guess work. When we ask the Specialist neurologists, they say that post mortem examination and dissection of the brain alone can confirm the disease!

There is a basket load of symptoms, and the doctors arrive at the diagnosis, if two or more symptoms are present! Don't want to sound cryptic, but in India, this is the fact!

Another perspective is that we all have to die some time - some sooner, and some later! But to fix a definitive period of 7 years maximum, based on the law of averages may not be true!

[Hiking13]

My husband was diagnosed on Sept 13th 2018 and passed away on Dec 26th 2018, I am sure he had had symptoms for a lot longer and he had been in hospital since the end of July. I think every journey of this hideous condition is different but I definitely agree with the live life to the full now as you never know what is round the corner.

Thinking of you

Sarahx

[Karynleitner]

We were told by the doctors at Mayo that those who have PSP that begins and progresses slowly, are likely to continue on that path. Therefore, the same is true for those who seem to progress really quickly. Although there are often times when the disease seems stable , they are more likely to follow a faster path of deterioration .

Many here have also mentioned a new symptom that is only temporary and then a small recovery. Almost anything is possible.

[Cinnylou in reply to Karynleitner]

We were told the same thing with my husband’s CBD diagnosis. The neurologist said that it would progress at the same pace it started. Kinda scary. His came on at a fairly quick pace.

[kramneb]

I would agree with what others have said, I also believe live for today enjoy every moment, don't try to predict when the end will come. You will get an idea the closer it gets but if you spend time trying to figure it out you may miss the time to enjoy and build memories xx

[NHGrace]

My mom was diagnosed at 76 and told 3-5 years. She died 2.5 years later, still able to eat and swallow (but not walk, talk or move much) and laugh. I think age of onset makes a difference as does type (she had Richardson strain) and whether any concussions occur from falls (she had one and it was a steep decline from there). Good luck on this arduous path. We understand.

[Katiebow]

As others have said, try to fulfil your wish list and enjoy life as much as is possible whilst you can. Also try to keep ahead of the game with equipment and any alterations you may need to have done to enable him to stay at home if that is his/your wish. Ben was diagnosed Nov 2014 and died May 2018 aged 66yrs. It seems his was the more rapid type of the disease but he did display symptoms a couple of years before diagnosis. Sending my love and support

Kate xx

[bevricas]

My husband is in his 10th year. Can no longer walk. Do all the things you want to do now! Enjoy each day as it comes, as much as you can!

[Tundrahawk]

My wife passed away 8 years after exhibiting her first symptoms. She was diagnosed with CBD.

[Nanny857]

We were also told 7 years. However with so many mis-diagnosed for years with Parkinsons for example, before finally getting the correct PSP diagnosis, I fail to understand how they can arrive at this figure. I understand the PSPA no longer state this on their documents.

As others have stated, do as much as you can now and create lots of lovely memories. Take care, Nanny857xx

[Mtorres9235]

Dear Acorneater.

My husband was diagnosed in 2007 and he had symptoms for 2 years prior if not more. His desire to live and fight for life has been incredible. The primary care that saw him 5 years ago said he would be dead within the year. I looked at my daughter at the time and later we both discover we were thinking the same thing. You don’t know my dad/husband. I will continue to support him through this as long as he wants to live. So, although it has been sometimes ridiculously hard for my family and me, we have learned to take turns loving him and taking good care of ourselves so we can take good care of him. Just like life, it is definitely a process. I also remember desperately looking for some end to this. I have found it gets harder and then easier with acceptance and support wherever you can find it. Sending love and prayers to help you and your loved one through this journey. And I agree. One day at a time.

[SewBears]

I’ve read and agree with all of the posts. Just want to add that it’s important to have your paperwork in order too. In the US: A Durable Power of Attorney for Health Care Decisions allows a person to make medical decisions on your spouses behalf. A General Power of Attorney is necessary to make legal financial decisions and a Last Will and Testament is necessary for detailing how a persons assets and property will be distributed after death.

I was told that this is what we needed and a year ago I put everything in order, just preparing for the worst. At the time I truly thought my husband was dying but everyday he surprises me and his rapid decline seems to have tapered off and he’s stable (for the moment). I’m aware that things can change on a dime and I hope I’m ready, but I’m not going to dwell on the inevitable.

Just keep on keeping on...

[arinkb]

Hello Acorneater,

Thanks for posting. Although it's sad that you are going thru this as a caregiver but trust its far worse as the sufferer. So let's take the eyes off ourselves and keep our loved one ahead of us. Also let us thank the Almighty that it is better than many many other diseases which involve a lot of physical pain, therapies, etc.

My mom was initially diagnosed with other diseases such as Alzheimer's, PSP, etc. to finally be told as CBD. It is probably her 11th or 12th year and she is doing quite well. Although she isn't able to move voluntarily almost at all, neither talk but she can understand everything and swallow with little trouble. Me and my dad converse with her normally giving her hope and tell her these stories (the good ones) about all of you too. I still believe the way medical advances are being made, some remedy will come over soon.

Read her "The Power of Your Subconscious Mind" and have her listen to all kinds of motivational audios on YouTube.

Take care...

[vecon]

My wife passed on11/6....was diagnosed

about 5 yrs ago......... prayers for you & family

[acorneater in reply to vecon]

So sorry for your loss in these terrible times,I hope you have the support you need around you to share in your grief.

Take care,Acorneater.