Final stage PSP

My sister age 79 was diagnosed about 2 years ago with Parkinsons plus syndrome,but now seems to be showing signs of psp.Slurred speech,confusion, agitation,and most recently eye closure making nursing home staff think she is tired and put her off to bed! When you speak to her when eyes are closed she hears you right away.Can anyone tell me if this is the final stage or near it? She cant walk on her own,and has very limited eye movement or facial expression.

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  • hi nannagoon well i certainly hope not as my eyes sometimes close when i am talking to someoneits the light that effects them and i feel ok apart from falls etc\\ and a few other things which i will not go into now i hope someone dont think ive had it \ because my eyes are closed and put me in a box just yet mate i have psp to \\\\\\\

    its to good up here at the moment seriously i wish your sister all the best and yourself take care peter jones queensland australia psp sufferer for ages it seems \\\

  • Please get a doctor to diagnose her nannagoon, the nursing staff need to know what to do to help her, and a doctor may give you much more information, also look for local Neurological associations whom may be able to help. good luck :)

  • Thankyou very much for your reply, she is due to see the parkinsons consultant later in the year,will look for local Neurological associations also.

  • Mum did this in middle stage. When she got to end stage her eyes were distant as if she was going to another place and her irises no longer seemed to work-the pupils were constricted all the time.I had the same issue with some carers in the nursing home-putting her to bed or leaving her if her eyes were shut but I taught the nursing home to always double check and that she definitely asleep was when her jaw dropped right open.She did it far far less in a darkened room or when wearing sunglasses.Sunglasses were better as so many people 'need to be able to see' when doing things for her so they would fling on the overhead light despite the side lamps provided and then forget to turn them off.

  • hi my dad i think is in the final stage now i cant understand him and he is unable to eat without gaging and is all day long he is now kept in bed as he has had a bad fall i would like to know how much longer he would have please

  • Hi Nannygoon,

    PSP is sometimes referred to as "parkinson's plus syndrome" so it may be that the Drs were thinking of PSP when she was diagnosed 2 years ago. If there is a recent change in her condition(particularly the agitation) I would recommend getting a GP to take a look at her to rule out infection (chest or urine are the usual suspects!!) Involuntary eyelid closure (technical term is blepharospasm) is a common feature of PSP and is sometimes helped by botox injections. The PSP Association has an excellent website with a section for professionals - it might be worth suggesting to the nursing home staff that they take a look!

    pspassociation.org.uk/for-p...

    best wishes

    Kathy x

  • Hi Nannygoon

    Kathy is right that blepharospasm is common in PSP. Some close their eyes and find it hard to open again, while others cannot close their eyes (and develop very bad dry eyes). The blink rate can also drop from a normal 20-25 per minute down to 5. They also have damage to nerves that control facial muscles hence the altered expression.

    My wife has PSP and she blepharospasm, and when in hospital recovering from a fall last year and fractured vertebra, she often missed out on the tea rounds because they thought she was asleep. She too, has slurred speech, some confusion, and the classical vertical gaze palsy (cannot look down or up voluntarily). PSP sufferers are aware of their surroundings, even in the latter stages. My wife cannot walk more than a few steps with her frame and needs me to hold her because she would fall otherwise.

    So it seems she is similar to your sister but I do not consider her in the final stage. Nevertheless, PSP progression is unpredictable, and someone at this"stage" could deteriorate rapidly in months, or continue for several more years. This is the nature of PSP. As suggested, there's lots of info on the PSP association site itself, and you can look back at the blogs and questions on this forum for lots more practical information.

    Wish you well and take care.

  • Strelley, My wife seems to squint or close one eye. I asked her if she was having some double vision and she said "yes". Is this another symptom?

    Jimbo

  • Hi Jimbo

    We both know that the type and severity of symptoms varies with each sufferer even if we talk about just one aspect, like eyes. Double vision (and blurred vision, burning, light sensitivity) is a problem in PSP when the two eyes are not correctly aligned and pointed at the visual target.

    Of the 6 muscles that move the eye, 4 are moved by the oculormotor nerve and the circuit to this is damaged in PSP. Some even have another nerve damaged that control the left to right eye movement (often later in the disease).

    It's interesting to note that not all PSP sufferers have vertical gaze palsy, which seems strange because the name of the disease is based on this clinical sign.

    So with these eye muscle movements abnormalities , it's also possible for one eye to be affected more than another.

    I also agree with your comment below about staging and we just have to take things as they come.

    Wishing you all the best as we care for our loved ones, and concentrate on the positives of life.

  • Strelly, You mentioned eyes not pointed at a visual target. Does this mean it is best for the person to be facing directly at the TV? My wife sits at a slight angle to the TV, not straight on.

    Jimbo

  • I'm no expert with respect to this subject, but because there are at least 3 or 4 problems with the eye focusing on objects both near and distant, I would experiment with your dear wife looking straight on at the TV and ask her if it's better. When visitors come I ask them to sit directly in front of my wife and fairly close.

    (The other eye problems include stuff that your neurologist would test, namely square wave jerks, slow saccades and quick phase nystagmus - you might want to look closely at her eyes and see if there are visible small flickering movements. All these eye problems affect reading, watching TV etc, eating and dropping food, actual walking and driving a car. Before diagnosis my wife was a brilliant driver, but then often came home with scuff marks on her tyres where she had been hitting the road curbing)

    The oculomotor nerve also raises the eyelids, adjusts light entering the eyes and focuses the eye lenses. So this can account for other problems when this nerve is damaged.

    I hope this helps a bit, and I'd be interested in any improvement in your wife sitting a bit more face on to the TV etc. (And if you look closely into her eyes, she may wonder what you are doing, but you may see those flickering movements I described).

    Cheers

  • NannyGoon, Some people subscribe to PSP having stages. However those same people are quick to admit that because the disease moves differently in each patient and developes at a different rate in each patient it is difficult to say the stage they are in. Just look at it this way. No matter the stage the patient could die from aspiration pnumonia, a bad fall, very bad UTI, or cancer. Therefore it doesn't make much sense to worry about the stages. IMHO I've decided to not waste time on the stage my dear wife is in and remain concentrated on the "here and now" (immediate issues) and making her happy and comfortable and without worry. I've read of PSP patients who have lived as short as three years and as long as eleven years (often in a debilitated condition). My wife and I don't discuss PSP much because all the talk in the world about what MIGHT be ahead doesn't help one bit in the present and can be discouraging to patient and caregiver. Those are my thoughts on "stages".

    Jimbo

  • Hi Jimbo, I agree with you. I always remind myself that, given the progressive nature of PSP, ' today is the best that my hubby will ever be again', so I try to make the most of each day, because we may not be able to do tomorrow what he can do today.

  • Sawa, I love your perspective! I didn't think about that because it's progressive today just may be better than tomorrow for my lovely wife Sharyn.

    Jimbo

  • Is it possible to find a consultant neurologist who specializes in movement disorder, ie dystonia, who will do a domiciliary visit to a nursing home? We have one booked with an NHS consultant whom I approached and showed photos of my father but ofcourse he needs to actually see Dad to assess and prescribe for. He told me to get a GP referral which I have done but the appointment is not for another 3 months. Dad suffering badly. Don't know where to turn for help. Dad bed ridden,aged 97 but still not ready to die. Should I just hang on until middle of August and let him suffer and weaken or what? Am in despair. East London area on central line. This neurologist who will not visit suggests PSP and I agree as I have been with Dad from the beginning and seen the progression. I will have to take Dad for treatment on a trolley!

  • Hi every1 I havnt been on here for a few mths,sadly my wonderful mom last her battle with psp on April 14th,although this is a blessing for her the last few weeks of her life were totally devastating for her she went frm bein ok to a certain point to a former shell of herself.she got aspiration pneumonia twice in the last 4 weeks,totally gave up refused all food didn't even want to drink,she was in a nursing home for 5n half yrs they were fantastic the luv n care they gave her was fantastic.2 weeks b4 mom died I had a fne call 11 o'clock at nite tellin me 2 get to the hospital urgently as my mom was unconscious and said was navy blue in colour,as u can imagine me n my family raced up their doc said she only got hrs to live n get every1 up here say there gud byes it was horrendous.amazingly mom pulled thru it,bt were called In 2 see doc nx day,her swallowing had completely gone,and he said she only got days 2 live.The news was devastating to us all,mom cudnt communicate everything was by squeeze of her hand she didn't remember a thing bt the previous nite thank god.we arranged with the hospital n the nursing home to bring her bak to the home were she lasted a further 6 days ,bt basically she starved to death.The image of my mom will sta with me 4eva,my mom Neva moaned just got on with her life living with that awful disease PSP,just wanted 2 share my story with all psp patients and their families.living with psp is awful 4 every1.my dad Also had psp he died 4 n. half yrs ago so I'm pretty much clued up on psp STAY STRONG best wishes 2 u all.x

  • i would like some help my dad has started to get worse in the last few weeks from talking slowly and able to eat some solids to not being able to talk eat and gags all the time and is allways falling over the nursing home wont let him out of bed now can you tell me is this the end i would like to know how much time i still have

  • Hi, Just wanted to say sorry for your loss. What a terrible time you have been through but you must take comfort knowing your dear Mum is at peace now. Best wishes to you.

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