Number of years of each stage

[Shiv_123]

My mother in law has been diagnosed with psp this may at stage 2 ,we don't know when it started.she is using walker and wheelchair .on good days she walks some steps without support.her symptoms include sense of smell,gait posture,urine inconsistency,stifness,pain in shoulder ,blank face with less blinking or face movement.does anyone know how many years does each stage has or when it progresses to next stage.

[easterncedar]

I'm sorry, but there is no reliable way to predict the progression of this disease, although people always want to know, of course, what to expect. It simply varies from person to person. Our neurologist said she had a patient that lived 18 years post diagnosis; that is the longest I know, but others may chime in with other examples. The median survival rate now is 7 years post diagnosis . The two most common causes of death with psp are falls and pneumonia. If you avoid these, the inability to eat and drink will commonly cause "failure to thrive" and ultimately death. Of course, having psp doesn't make a person immune to heart failure, stroke or cancer. I regret not being more helpful. I hope for the best for you and your mother-in-law. Ec

[jzygirl]

Hi sorry to hear about your mother in law... but the quick answer is.

Psp has no set stages and no time line.. each person is different and a lot depends on where the tangles form in the brain as to what the person can do. Infections will also affect the progress. Brian before he passed away was unable to move at all but was still able to talk and eat... others lose speech early on but are still mobile.

Hope this helps. Jane xx

[Steve666]

It sounds just like my wife. She was diagnosed 3 1/2 years ago.

[D0ttieL0ttie]

I can only concur with what has already been said. Try to get the most out of each day and contact your local GP to request how best you can both be supported

[doglington]

Agree with all. Just prepare for progress but make most of "now". It will get worse so focus on making good memories.

love, Jean x

[vidvv]

Agree with everyone Shiv_123. The sufferer's progress gets plateaued after a point, and there is then a sudden deterioration is what I understand from the discussions here. Buy things that you will need for her comfort and proof her rooms while she is mobile.

Off this topic - Are you by any chance in India? (guessing from the id name - apologies if that isn't the case). And is your MIL being treated in India in which case i may have questions on specifics on treatment and doctors.

[Shiv_123 in reply to vidvv]

Hi,we are in u.s but consulting doctors at both the places. treatment she is getting is muscle stiffness meds and levodopa.her mobility has improved some days she walks without a walker some days she is very tired .

[Karynleitner]

I too would love answers to this question. I have been told to "stay ahead of the disease " yet once I get something in place, it is sometimes no longer what is needed. I plan to buy a vehicle he can get into easier, yet think I should instead plan for something I can get a wheelchair in. I plan to move or remodel a bathroom, yet am afraid by the time it is done, I may no longer be able to sit him on the toilet. I plan to buy a house that will make it easier for him to get out, yet worry that by the time I find it and move, he will no longer be able to get out much. I would also like to hire help, a few hours a week, yet realize that if this goes on for many years, the cost will be too great. Therefore, we will do it ourselves as long as we can, which is making life a struggle and sad,. My husband does fall, but as he becomes less and less mobile, that should stop. He rarely chokes , but has a very hard time feeding himself . Cognitive issues are definitely there and present a mystery and challenge. Sadly, he rarely speaks, although he can. His voice is clear and good, but he often grunts instead of speaking. Yet, somethings he is as sharp as a tack with. Streets, old friends, music, etc.. It is devastating because I feel like we have lost SO much of him already.

I know you all understand and respect you for the love and kindness and support you show to your loved ones and each other.

Karyn

[scribefish]

As it is different for every person I cannot speak to all PSP cases as a whole. However for Momma those were her symptoms 2 years ago. She is currently wheelchair bound and can no longer walk. We have noticed plateaus that we call "the new normal" that vary in length. She also has randomly experienced the loss of abilities we have termed "slips". The last two slips have been mental. The first was the onset of confusion and the second was memory loss which coordinated with some decline in verbal skills. The one previous (4 months ago,) was the ability to hold a paint brush. Her last few slips have been in quick session but the few before that were several months in between. In the early days there was as long as a year before the next noticeable ability loss.