Does any one know what stage my dad is at??

Dad can not walk he is in a wheelchair, his eye sight is non exsistent, he sits with his tongue out regualry. He has bed sores on his bottom and cant bend his head backwards. He shows no interest with tv, talking with friends or family or even going on an outing.

He was diagnoised with PSP in September 2011 but with Pd a year before hand.

Can anyone help me with where he is at with PSP??

18 Replies

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  • Hi,

    I wonder the same about my husband, but that's one of the things about this disease, everyone experiences different things at different times. It's not really cut and dry, because there is no specific "sequence" of events. Frustrating! I hope someone may be able to offer you an answer that will be helpful.

    Joan

  • Joan, You nailed it with "frustration". This PSP is certainly that, in spades! lol

    Jimbo

  • Dear Virgo32,

    It is an extremely difficult situation for you and your father to be placed in for which I understand there is no clear answer I can give. Everyone with PSP seems to show diferent sign of the disease at different times. The pattern of the illness is not clear. Some people exhibit signs of rapid decline then have a renewed energy for living. What I can say though is you and your father need the support of all that can be gathered including family and friends. Continue with the medical profession and allied services to look after after the physical & mental aspects of your fathers deterioration.

    Every case of PSP seems to vary. For example - three years ago my husband had no interest in being part of the life and refused to acknowledge his daughter and friends. Now it is the other extreme - he wants so hard to participate in everything it is so overwhelming. At one point John developed bed sores which have since healed (Even the respite home care he was in didn't realise what can happen over two days!). Mind you he now always seems to have cuts, abrasions and on permanent antibiotics.. John has restricted moment to much of his body, then at other times he appears 'sort of' OK and stumbles around. PSP is certainly one of a roller coaster ride.

    My point is just keep doing the best you can (and to be using this forum for support suggests to me you are) and remember to keep your own health in check.

    Regards,

    Alana - Western Australia

  • Hi,

    Hope this helps you.

    pspinformation.com/disease/...

    Regards, MJ

  • Hi Virgo32

    I reiterate what everyone has said. Every PSP case is different. It is documented that the life span of someone diagnosed with PSP is 7-9 years. My Father was diagnosed in 2009, but he was dealt a very bad hand because he had a strain of MSA (multi system atrophy) as well, and the life span of MSA is +- 5 years. His decline was gradual over the years.

    I agree with SharonAB. Your family and friends support structure is very important right now. There is no "stage" when it comes to PSP. Just take 1 day at a time, and vent if you need to. We are all here to support each other.

    God Bless.

  • Please if you can get in touch with the PSP Association, hopefully they will be able to guide you in the direction of some more specialist help where ever you live. Please do. With every good wish Flicka

  • I would reiterate all of the above but definitely contact the PSP Association helpline as they can offer you some guidance and support.

  • It is when the symptoms are all coming together big time that you can say pwPSP are fully middle stage. However this can last varying amounts of time. Mum was fully middle stage for about a year, end stage for about 7 weeks but this was determined by her infections which took her down a notch each time and she was 77. For mum end stage was a dramatic change as she woke up one morning unable to do anything bar open her eyes and swallow. This from being able to walk short distances to the toilet from a chair to bed etc. with support.

    Do take the very good advice on here.

    Best wishes, we are here for you. xx

    Dianne

  • Hi virgo32,

    Sorry to hear about your dads battle with PSP.

    I found this on the net a few months ago. I don't know typical or accurate it is in general, but it definitely helped me to pinpoint roughly where my dad was at-stage 4.

    Hope it helps you.

    Caregiver's Guide to the Phases/Stages of Progressive Supranuclear Palsy

    Compiled by Patricia Lake of Texas and Mary Holeman of Indiana

    August 8, 2000

    In 1999 several members of the Johns Hopkins PSP Listserv decided to pool their collective wisdom to try to see if they couldn't catagorize the symptoms associated with the normal progression of progressive supranuclear palsy enabling the defining of phases or stages of the disease.

    This is the result of these efforts. It was originally posted as a message on the PSPInformation mailing list. Visitors to the PSPInformation website often tried to find the information on the website and couldn't - so, "by popular demand" we are also publishing it here. PSPInformation.com does not claim any credit nor does it assume any responsibility for the statements made in this article. It is solely the viewpoint of the writers.

    This categorizing of the symptoms of progressive supranuclear palsy is not meant to be scientific. If you are caring for someone with PSP you should realize the disease follows its own "timetable". The progress of the disease may be different in your case. The purpose of the article is to serve as a generalized caregiver's guideline to what to expect as the disease progresses.

    We must also note that progressive supranuclear palsy is often misdiagnosed because the diagnosis is based on symptoms. Many symptoms can apply to more than one of the many diseases and conditions that are very similar and determining their real association can be very difficult if not impossible. Most patients may also be on medication and very susceptible to possible medication caused side-effects. Thus, they may develop symptoms that may be thought to be from progressive supranuclear palsy but are not.

    The Phases/Stages of PSP

    Phase 1 - Deterioration of handwriting and difficulty writing. Speech problems, difficulty being understood by others, slurring, etc. Coordination problems leading to unexpected falls and stumbling; change in walking rhythms/patterns. Vision problems; some complain of 'blurred' vision; some try prisms, but examinations by eye Dr. generally will only find normal vision physically. Lethargy, apathy, no desire to do anything; changes in sleep patterns. Cognitive problems; decrease of sound judgement, decrease in modesty; increase in impatience and irritability.

    Phase 2 - Problems sitting down or getting up; cannot lower self into chair gently; just 'plops' down. Increased difficulty walking; begins using a cane for balance; will progress to a walker; increased number of falls. Stooped posture because of vision problems; can't see downward easily. Problems opening or closing eyes; some patients get 'dry eye' because their eyes do not close all the way. Difficulty dressing; cannot do buttons or zippers; hands and fingers do not work as they used to. Almost impossible to write anything legibly. Eating problems; coughing and choking; loss of eating etiquette; fills mouth too full; lots of spills; begins wearing a bib to save clothes. Bathroom problems; difficulty voiding/unable to get to bathroom in time; constipation or diareaha; may need help with personal hygene. Needs help bathing; may need hand rails/bathing bench, etc. A mobile shower head is a good idea, if possible. Weakness or neglect on one side of body; one side more dominant; ie: drags left or right foot, etc. (Shydragger syndrome) Subject to infections; urinary tract, respiatory tract (pneumonia) etc.

    Alien hand; sometimes holds on to things and cannot let go or takes the hand a long time to release. Difficulty concentrating; sometimes seems 'out of it'.

    Phase 3 - Some obsessive-compulsive behavior: ie: fingers "pill rolling", hands smoothing out imaginary wrinkles on table, etc. Increased irritability; increased impatience. May become incontinent of urine and bowel. Increased speech problems; often very difficult to understand; cannot articulate proper speech sounds. Increased eating problems; more coughing/choking. Increased cognitive problems; cannot follow stories on TV; cannot read much, due to vision; will watch game shows, some news. In Theater movies are not recommended, as some suffer from 'sensory overload'; loud sounds and many colors, lots of movement on screen make patient 'nervous'. sleeps much of the day, and all night, too. Instances of 'restless leg' syndrome. Limbs and neck may become rigid; may loose ability to support self on legs. Increased falls; some falls may be close to geing described as 'seizures'; complete loss of control of arms and legs, with reslutant fall. After fall, will sleep for an hour or so; may not always know whether is injured or not; may not 'feel' the injury. Increased coughing and choking; drooling becomes common; often does not close mouth; Infections may be more frequent. Requires much more help in dressing and with all activities of daily living. Does not speak much, but does enjoy seeing friends and relatives, even though patient may not respond much to them. May have pain in arms or legs; non-specific pain for no apparent reason; application of 'heat' rubs may help; Tylenol may also help.

    Phase 4 - Unintelligible speech/mumbling; cannot say words; may go days with out saying anything. constant drooling; coughing and choking may become so severe that eating normally is impossible; Dr. may reccomend feeding tube, which requires a surgical procedure to install. May have trouble opening mouth, even for meds. Increased incontinence/constipation problems. Loosing insterest in daily activities; sleeps most of the time; uncomfortable sitting for any length of time; prefers bed. Cannot support self on legs; 'spaghetti legs'; body rigid, especially neck area. Little eye movement; cannot 'look' at something; slow to focus on things in view. delusions, hallucinations at times; may be disoriented and not know where they are. Pain, but cannot identify the area. Withdrawn, but remains aware of people; cannot move on own; needs extensive help for all activities of daily living.

    Note: These phases or categories often overlap and are not the same for all patients. Some may have two or three phase 1 problems and one phase 3 problem. Some may never have all of the problems, but most will need extensive help to live out their lives and will need to be made as comfortable as possible for the duration of their illness. It is wise to gain from the patient, specific information as to feeding tubes, restorative therapies, etc. before the disease is well advanced; a living will is a good idea, so that loved ones will know how the patient wishes to be treated, should life threatening acute problems occur. Long term care will probably be needed and plans should be made before the patient becomes unable to participate in the planning.

  • Virgo, I've posted my views on "What stage is my loved one in?" many times. To me worrying about the stage is not productive. You still have to deal with what is going on today and deal with it. No matter the stage knowing it won't change a thing, give you satisfaction, or reassure you. PSP moves differently in each patient. What affects one patient alot may only be a minor issue in another patient. Some patients live a short time with PSP others quite a number of years. What is ahead for your loved one may not be in the future of another person with PSP. Length of life can't be determined. Your patient could asperate in stage one and die of pnumonia. Your patient could have a bad fall in stage two and never recover. One of the top neurologists at University of Florida Neurological Clinic told us to not worry about stages and live one day at a time. He said he won't be guessing what stage my wife is in because in the overall picture it doesn't matter. It's good to read the stages but don't hang your hat on trying to determine where your loved one is at this time, it could change quickly. Live and love one day at a time and forget the stages is what we are doing.

    Jimbo

  • Dear Sir, Ive only been on this site a few days, but Ive seen quite a few messages from you. Indeed you replied to my only message on this board about diagnosis. I was a UK Government scientist for over 30 y and intrinsically trained in accuracy of words, diagnosis, staging of pathology et etc. So your reply on staging intrinsically doenst sit well with me, but our experience of this horrid illness is the opposite. My wife is being treated for her 6th pneumonia at this moment, they treat the pneumonia but dont really look at the PSP. We feel that weve survived the 6th pneumonia and so would probably survive the 7th, but that doesnt follow at all. I am finding all my background science is no use at all when I'm cleaning the diarrhoea off the floor whilst holding onto my wife. We now just plan to get through the next week without incident. She continually asks where are we going what will happen next, and we just dont know. When she comes home in a few days time, I will probably not have time to write little notes like this one. Best wishes

    jmbb

  • Sorry your wife has to endure PSP. I know how heartbreaking watching her go through this must be for you. My wife passed on May 4 and I'm struggling with memories of her suffering over six years. Easy to say think of the good times, and I do, but the tough times are engraved on my heart. Stay strong and take one battle at a time. Jimbo

  • I so strongly agree with Jimbo- i learnt " the one day at a time" philosophy when I was working with people who had been given a diagniosis of other terminal illneses. i adopted it with Chris when he was ill with PSP and I did find it very helpful. We both lived in each day and let tomorrow take care of itself.Even when it comes up and smacks you in the face you don't want to beleive it anyway. Chris always had this philosophy about crossing bridges when you actually get to them not trying to cross them everyday when they could be miles or, in our case weeks or months away. Of course there are things you have to organise etc and this alway falls to the carer, so get whatever help you can and let your friends support you and the family and remember to tell your dad how much you love him. He may not be able to respond, but he will feel better inside for having heard those words spoken. My thoughts and prayers are with you.

    Teena2

  • Thank you to every one that has left me heart warming and honest comments.

    My dad is residing in a nursing home as i am a full time worker and have no other family, so as you can understand i feel really guilty about that also. Hes always asking me if he can come home with me and it tears my heart out.

    I visit him four times a week and phone him every other day but im still feeling guilty. if i could give up my job i would in a heartbeat but my circumstances dont allow me to do that.

    I just hate seeing him this way and dont know if i can take another two or so years of it.

    I do have friends to turn to and they are really supportive but this is my dad this is happening to so they dont really understand.

    I cry most times when i leave him at the home and feel like everything is bottled up inside of me and one day it is just going to explode. I just want it all to go away.

    But its not going to so i guess i need to pull myself together and take this journey that we have been dealt with.

    Not only does dad have PSP but my mum has MS as well. She is back in New Zealand and has my other side of the family around her so at least i can take comfort from that.

    She is still mobile though and can still get about for now. Not sure how much longer though as she is starting to drag her right leg.

    I often wonder what is in store for me when both my parents have these diseases or my children or their children.

    Well i guess ive ranted enough for today so take care and thanks for listening. xx

  • You are a hero in my eyes! You must trust that you are doing the right things and not second guess too much. You are human but your love for your dad is large. Did I make mistakes on some days with my wife, yes. Did I often ask "ami doing my best?", yes. Almost always the answer was yes. Looking back I have no regrets but one. Did I tell her I loved her enough? I feel I did but wonder at times. Hugs to you. Jimbo

  • I too was stuck on staging for the 1st while after I was diagnosed last summer, tho symptoms preceded the diagnosis by at least 2 years. I'm 54 and my girls are 21; I done no end-of-life planning, so felt a stronger need to know what 'stage' I was at to get my affairs in order as well as settle my girls into this new situation.

    I think the thirst for staging and a simple answer, at least for me, is from all I've heard and learned about various cancers. My Dad was diagnosed for the 1 time with cancer 2 summers ago at 'end-stage 4 +', meaning one-to-3 months, but in reality could go any day. He was way past the point of treatment; very aggressive stomach cancer that had already spread to his liver; he lived 31 days from his diagnosis.

    To sum-up, since stages are frequently used with cancer patients, and stages imply a certain period of time, I was anxious to know what I was dealing with. Couldn't get a straight answer from research, and my Doc just would not go there with me at all. Spoke to what others posted. Too many variables. He's always erred to the optimistic side and continues to insist if I keep digging out from under long term stressors I was dealing with (almost done), moving into a physically more suitable environment, and put myself at the top of the list everyday which comes hard for me, I may be able to slow this down or at least stabilize it.

    I'm admittedly doing better than your Father. But on a few levels that are more subtle, he might be doing better than me. Who knows for sure with this complicated disorder?

    I read over the staging provided by Groovy-Chick; it was interesting; hadn't seen that one before. But the result for me is I'm a definite blend of Stages 1 thru 4. Wide-ranging.

    I've finally stopped fighting with myself over PSP and am entering a period of acceptance which by no means implies giving up. It means for me I have it, it's not going away, and I can adapt to it and utilize all the therapies and 'tools' at my disposal to increase the quality of my life, instead of trying to push it aside and 'be normal'. Now it's become counter-intuitive for me to want to know about staging and/or where I'm at. I have yet to ask my Doc this question over the winter months because my physical symptoms have worsened, but my mental acquity has improved a lot.

    So I've been echoing what some others are saying. Focusing on the present and living in it sometimes hour by hour on a bad day, or the victory I feel if I have a good day.

    When I was helping care for my stubborn-just-turned-73-year-old Father a few summers ago, who refused anything to do with hospice, I learned a lot in that bittersweet period of time. He owned a golf store in which he'd make designer clubs, repair clubs, had thousands of antique collectible anything about golf in his on site museum which was also his residence. Every morning, starting about 10 until 2, numerous customers of his that became his 'buddies', or former employees, or just friends from the area would come and go, and keep him company while he sat behind his desk, still wheeling and dealing.

    In their effort to comfort him, I often heard the repeated expression "We all have an expiration date stamped on our foot.". Think it was well intended but kind of cold comfort for him because it was happening to HIM, and I sensed it was a lonely journey tho so often surrounded by others.

    What I took away from that and relate to my own experience with PSP, is we all have an expiration stamp on our foot, but mine is perhaps a little more visible than other. I know the facts so I've decided to stop looking at my foot; anxiety producing and counter-productive, at least for me.

    Hope this helps, even if in the smallest way.

    Being a caretaker is hard; take good care of yourself too

    Judy J

  • Well said Judy!

  • Hi sorry about your dad.

    I would get professional help and get the sores dressed incase of infection. He may benefit from physio and sounds like he has the depression and mood symptoms of the disease. Maybe getting back to nature, going out to places to hear alot of birds singing, getting fresh air in his lungs may help. Keep an eye out for creeping pneumonia as it sets in at times when the mobility and health is not at it's best. Each person with this disease will may show different symptoms at different stages than your dad. I hope this is useful information. Godbless

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