I'm in the early stages of PSP. I've learned much about what to expect at or close to end-stage. But what is the middle stage like?

[JudyJ]

[jillannf6]

hi

judy j

you are on teh right blgo here and plz excuse my dyslexic typign!(1 hand stronger htan the other)

i was dxd dec 2010 and am pretty sure i have hte slow sort fo PSP as pointed out on thsi website

as i am still here =upright most of the tiem apart form when i fall (cannot get it to less than 4 tiems a day on ave)

the communicaigton sid eis difficult as mhy speech is more garbled/ quieter amnd diffiuclt fr anyone to understnad who does not know me

i need toslow down in all that i do but everuything has speeded up wiht hte PSP for me STRESS MAKES IT ALL WORSE TOO

i ha ve real problems with fine motor skills (buttons zipe et c) and it is v frustratign but my carer is great and i s v willignN ot help me in all fo these htings

so my urinary problems and bowel problems have got wors ein the las t12 months but are still manageable

i have dealt wiht AN LPA and htea crucial A4 sheet which goes With itFfor when i can no longer do anythign 4 mYself or cok=mmuncaTE IN any wya

i twill happen i knwo but i am pretty sure having done everything the neuro advised me to do on diagnsosi htat i have got acoupel mroe good yhears yet

ht eapsp asssoc has a good download of th estages of psp which has been upgraded and is suitable for anhyoen to use

i would recommen ditg btu rememberign tha teahc case is unique ..

lo l JIll

:-_)

an dhang on in there!

[JudyJ]

Thanks for reply, and again, in spite of your dyslexia, I can still translate almost all of your postings

When I ask my Doc what to expect during the middle stages, he responds with a "don't worry about it, you're not there it." I know his point is to stay focused in the present and not get caught-up in what's to come.

Reading others posts on this site who are in the more advanced stages, humbles me. But to be honest, scares me too. I wish there was away around those who love me could avoid watching me deteriorate, but it seems inevitable.

Although reading some posts about end stage matters, usually by caretakers, it's invaluable to me because I still have many legal decisions while I can, and am making headway.

But there are days and/or weeks that I have such difficulty because of PSP, I can't help but wonder what the middle stages may bring. Again, I have to plan while I can.

You are spot on that stress makes everything worse. No doubt in my mind.

You take good care of yourself.

Judy

[JudyJ]

...and what's starting to concern me more is I can feel the changes almost everday; I do not believe the positive changes I made in my life in recent months, such as moving to one level living has stalled it. I see my Doc mid-March and am taking notes about my usual symptoms as well as new ones. Think we need to have a more detailed conversation, including what staging means, which could be different here than in the UK or AU. And, after reading some recent posts about physiotherapy, I'm pretty sure I'd benefit from some PT particularly for balance as well as some OT for cognition issues. I truly don't want or intend to dwell on the future, or in otherwords, what hasn't happened yet, but when I think back even a year or 6 months ago, and the increasing symptoms of PSP, I find it disheartening things are changing this quick. At least it feels quick. Still hoping in spite of it that I hit a plateau and have many good months or years ahead of me.

[jimandsharynp in reply to JudyJ]

Judy, You said it yourself - It doesn't matter what stage you are in. You should be concentrating all your efforts on your current status and coping with what "is" and not "what's coming". Someone once told me "Worry is the interest you pay on things that may not happen". My wife and I try to stay in the "NOW" and not the "FUTURE". It will releive a lot of stress if you do that. Due to the nature of PSP there isn't a way, unfortunately, to know what stage you are in. It's different for most every patient. The top neurologist at University of Florida neurological clinic says he can't say what stage my wife is in or how long she will live. He stressed concentrating on dealing with the current status. Sorry to go all "preachy" on you but I think it is important for you to stay with the current so as to reduce stress.

[JudyJ in reply to jimandsharynp]

Thanks. I need a little 'preachy' sometimes However, because my symptoms are becoming more consistent & a few new ones jumping on board, my main goal is to complete my legal affairs. My friend is coming back in town so we can meet with my lawyer, and after reading so many stories about the later stages, I feel it's both time to get my will done but especially my health care directive done. Tho it's been hard sometimes reading about end staged loved ones & their challanges, it's been very helpful for me. It's taken me many months to get a grip on this thing, and I want to make the decisions about my care, or modifications, to my care going forward, so my daughters don't have to do it, or other family members. On the 'I'm only human"-end of things, can't help but what wonder what's to come. It's be best excuse & am sticking to it

[jimandsharynp in reply to JudyJ]

JudyJ, Do you think you would opt for a feeding tube of any kind near the end? Just a personal question and you need not answer if you don't think it's appropriate.

jimbo

[JudyJ in reply to jimandsharynp]

The simple answer is no. In fact, I talked with my therapist about these kinds of things yesterday. The more I learn about PSP in this fourm & thru other resources, It seems it me, if I wished, I could probably kept alive for years via advanced medical care. But it goes back to the question of quality of life. If I have to be tube-feed, and almost every way, can't take care of myself, and am dependent on others, but most of all, if I'm not cognizantly aware of much of any thing of quality, I just am having a harder & harder time being okay with that. And what and for how long those close to me would have to endure because my life is being prolonged, but without any realy quality, because of advanced medical care/technology. My therpasist said a health care directive can be very specific including some Plan A's, Plan B's, etc.

[jimandsharynp in reply to JudyJ]

That's our thoughts also. Hang in there we are going through this together.

Jimbo

[JudyJ in reply to jimandsharynp]

Thanks Jimbo; sincerely; this is kind of a lonely journey; thank God for this forum.

[kay1]

husband was diagnosed in 2008, he "hit the plateau" and family became complacent. There has been quite rapid deterioration and the nursing care home where he resides are good dealing with the new problems. I haven't a clue whether we are still in middle stage, or just passing through to next stages. I can understand your worries but the wretched PSP has a habit of turning tables when we least expect it, and we are left with questions and no answers

[JudyJ in reply to kay1]

Thanks for your reply, even more so, your honesty.

Judy

[shasha]

I WAS DX WITH pd IN JAN 2010 AND DX WITH PSP IN NOVEMBER 2012 - SO IT IS VERY DIFFICULT TO KNOW WHAT STAGE I AM AT - I CANNOT WALK UNAIDED BUT FEEL BETTER FOR NOT BEING ON THE USELESS DRUGS FOR PD -- SO I AM LOOKING FORWARD TO A LONG AND HEALTHY LIFE !! SERIOUSLY THOUGH I AM CARED FOR BY MY HUSBAND WHO IS JUST WONDERFUL SO AM LUCKY IN THAT RESPECT - BUT HVAE ALSO MADE PROVISION FOR WHEN I AM NO LONGER ABLE TO COMUNICATE MY WISHES- I.E I DO NOT WANT TO BE FED BY ATUBE INTO MY STOMACH NOR DO I WNAT TO BE ABURDEN TO ANYONE BY BEING KIE A BABY CHANGED AND TURNED ETC -

LOVE FROM SHA XX

[JudyJ in reply to shasha]

My PSP symptoms started the summer of 2010, no doubt about it; went from doc to doc; kept hearing my symptoms were from stress/depression til I was diagnosed via much objective testing 8-12. My Doc started me on Simonet (sp?) w/o explanations. When I went back 3 weeks later & told him it made no difference, he said it shouldn't have with PSP, but felt he needed to give it a try. Took me off it; said there was no reason to have me take xtra chemicals I don't need. Now I'm just on meds to treat the symptoms.

I'm glad you have your husband to help care for you. I'm (happily) single but leaves me in a bit of a bind going this way on my own. My daughters are 20 and 21, the oldest who has special needs and is usually high functioning, but when she's not, she's really not.

Both still look to me to be 'the leader' so I'm being more stoic than I feel for their sake.

I, too, do not want my life prolonged, which it could be, with advanced medical care. I just haven't been able to see the purpose in that as I would continue to deteriorate in spite of the advanced care, and breaks my heart to know that, especially my daughters, would live that experience. So I'm in the midst of getting everything legally documented and affairs cleaned up.

But I've been quite confused about the references to stages with PSP, not just within this community, but via other professional sources. It seems to me their is the early stage and the later stages, and not much in between...?

Take good care of yourself.

Fondly,

Judy

[lepman50]

Well, as for me, I think I'm just starting into the middle stage, I have more and more difficulty with thought processing, especially with what I hear, in relation to what is actually said. keeping on track and remembering where i'm at with stuff is also harder. So slowing things down dose help. I find myself haveing to concentrate on stuff harder, and it may look like i'm staring off into space, and even have that deer in the headlights look. Emotions are all wacky, and mood as well. I have learned to recognize when that happening and try to adjust it, but the Stress really makes it worse, and Is it just me, or dose the weather seem to affect this as well?. But then again that maybe just coincedence. Just haveing a bad day with the bad weather. I walk with a cane, but doc's want me to use a walker or a wheel chair, but I am reluctant in doing so. I think that once ya start, you have a tendancy to be less active, and get way more issues that can go along with what ya are going through already. weight gain and a more general weakness muscle wise, just to think of a few, Not that thats not happening now, because I was way more active before this all started, but being more active is better for ya , kind of like your own session of physical theropy if ya will, pushing and challenging yourself. Although, in the final stages we will have plenty of time for rest because this will just not go away either, just gets worse.

[shasha in reply to lepman50]

YOU AEE ABSOLUTELY RIGHT TO REFUSE A WHEELCHAIR AND A WALKER THOUGH I DO USE ONE AS I CANNOT GET AROUND WITH OUT ONE - MY PHYSIO IS ADAMENT THAT I CAN WALK ON MY OWN AND WHEN SHE IS HERE - I DO !!

SO GOOD LUCK WITH ALL YOU ATTEMPT

LOVE SHA XX

[JudyJ]

I hear what you're saying because I'm experiencing the same things. In fact, for the 1st time, last week I had an awake hallucination. That can't be good. I was aware of it as it was happening, and thought "Well, that's different." What others see of my on the outside doesn't necessarily translate into what I'm thinking or feeling. Nothing violent or anything like that, but cognitively, feel like I'm losing it a bit more.

As to using walking aids, I usually use a cane when out in public due to pre-existing hip problems. On good days, I'll go without. Because I was experiencing much imbalance last week and had a few falls, I used a walker, or stayed off my feet.

I have felt the same way you do...if I use these aids more, etc., it's almost like I'm giving into it. But truth be told, I am at a place where I need them to increase my functioning and for my own safety.

My doctor has confused me for months, or I should say, I just need to get better clarification from him when I see him in March. Since August he's been adament that I be up and active no more than 3-4 hours a day, then wants me resting the rest of the day. It seems counter-intuitive, doesn't it? But I do trust him. And to be honest, my energy level is quite low, so the limit of activity he put on my is about the most I can stretch myself.

I will ask him about physical therapy/occupational therapy next time I see him. Can't see how it can possibly hurt, only help.

And, definately pick his brain about the staging ?'s I have; hopefully, he won't duck and dodge that answer. I'm thinking, tho, the only way he might be able to answer that is through another brain PETscan. They're incredibly expensive, and I had to battle my insurance carrier the 1st time to get it approved...like we don't have enough battles to fight, eh?

Take good care of yourself.

Judy

[Hidden]

Mum was diagnosed when she was already fully middle stage. Her swallowing was fine throughout that and she could walk unaided but needed supervision as she would veer off and fall. She grumbled about having to ask people to walk with her and tried at all times to do it all herself. She would forget or ignore the fact that she was being looked after and try to do things with the consequences being yet more falls. I think her stubborn and independent personality governed this, and to be honest, the late diagnosis- as she told no one about some of the things she was experiencing. Luckily I always spent a lot of time with her and noticed her issues and sorted out most things but it was only when I got her into my GPs that I was listened to as they knew I wouldn't make things up. As mum is 77 things were probably worse for her and they certainly have happened fast. Had we known more at the early stage we could have have managed everything differently. You seem very aware and that will help you a great deal. xx

[shasha]

WERE YOU AWARE THAT THE THING ABOUT PSP AND TRYING TO DO THINGS ON YOUR OWN IS ALL PART OF IT AND CAN LEAD TO FALLS AND INJURIES ?

[JudyJ in reply to shasha]

Sasha:

So sorry it took so long to get back to you; think I'm a lttle confused about your post...can you elaborate a little bit? Maybe I'm to close to the forest to see the trees...

[ManakGupta]

hi everyone,

its always nice to get back to all of u.although i am not very regular with the posts but i do often read them up.i am a practicing dentist in india and my dad was diagnosed with psp somewhere in nov 2011.

i wanna share my experience with u and also give my opinion on staging of psp.

my dad used to drive down to work about 40 kms from home everyday and i was in australia for a medical conference, but when i returned i found his car bruised from all sides and that was unusual for a driver of his caliber..his car had been all clear all these years.

thats the time when doctors saw his limited vertical gaze capability and diagnosed him as having psp.

although vertical gaze is a feature which can present at any point of disease but its a major criteria to differentiate it from the parkinson's disease.

now almost 1.5 years down the line i have seen definite deterioration in his health.

he has developed a wheezing kind of sound while exhaling and his speech has become little hoasre.

the biggest issue has been his balance. what i know from the treating doc is that he has osteoarthritis secondary to psp and hence knee replacement is not a good option.so if ur having psp and little overweight do give attention to reducing down little bit and exercising your knees actively..

we r getting his active physiotherapy done and improve lifestyle but going to public places is difficult...lack of awareness abt this disease amongst the local population makes them take keen interest in his disease and often land up in talking abt it and sympathizing with dad which irritates me.

staging disease is very difficult..i guess even the doctors dont understand the disease that well. there can be days when u feel its really bad and suddenly a spell of improved health follows.

constant medication has started showing signs of hallucinations but without medicines dad becomes too lethargic.we are trying homeopathy for him and atleast for the time being it has shown some signs that it might help in maintaining the plateau stage.

his reading abilities have decreased and affecting his work on computer and simple tasks such as newspaper reading.

also i feel that in my country the supportive treatment specialists are not that well trained and equipped compared to west and that the support and lifestyle modification which is possible in that respect is suffering.

but yes what i have understood abt psp is that its a non predictable disease..in terms of rate and symptoms..as its well understood that its a syndrome and it can show one or all features..so the stages greatly vary in all people and categorizing them at present seems a difficult task...the way to slow it down is to stay positive...exercise regularly..do some mental exercise...and try avoiding falls...that ofcourse has to be taken care by family or caretaker.

wil ltry to update you further regarding the same.

would love to hear abt all of urs life modication styles as well.

please feel free to get in touch thru phone or mail.

email: [e-mail]

ph: [phone]

regards

Dr. Manak Gupta

[groovychick]

Hi JudyJ,

pspinformation.com/disease/...

I put this link up on the PSP facebook page_it gives some real answers for PSP sufferers, their carers and loved ones. These were the types of answers we were looking for from the neurologists when my dad got diagnosed, but no-one was prepared to answer us this specifically.

Hope this helps.

Sending lots of love,

Sonal xxxx