Recently on this forum, a few have mentioned how caring for their loved one with PSP is somewhat like caring for a child. I thought I would make a quick list of some PSP symptoms that might reflect this idea.
Child: will attempt to stand and fall, often backwards on its bottom.
PSP: tendency to fall backwards; also "flop" on their bottom into chairs. (My wife fell on her bottom and fractured her T12 vertebra)
Child: starts to walk with a (wobbly) gait and short faltering steps.
PSP: walk with a wide clumsy (staggering) gait - "drunken sailor syndrome"
Child: often sets off to walk slowly, then speeds up and often falls.
PSP: often rises and bolts forward (rocket sign) or walks slowly and then speeds up ( also termed motor recklessness), sometimes resulting in falls.
Child: cannot eat solid foods; sometimes spits/coughs out food (swallowing reflexes not fully developed). Left alone may put too much in mouth. Spills down bib.
PSP: often cannot eat solids, must be pureed; sometimes spits/coughs out food ( nerve damage controlling swallowing/mouth muscles). Often fills mouth too much. Spills down clothes/bib (called "dirty bib/tie syndrome).
Child: drools excessively
PSP: some will have excessive saliva build up (and drool)
Child(baby): has some involuntary (hand/limb) movements .
PSP: may show (motor perseveration and/or apraxia) the "applause sign" ( *see end of this post for this test).
Child: initially makes noises, not words (soon learns words)
PSP: makes noises, moans, hums etc. (will have difficulty finding words)
Child: cannot write and learns slowly often with large letters
PSP: loses ability to write, initially with small uncontrolled and sloping lettering (micrographia)
Child (baby): grasps hand (holds tightly to parents fingers etc)
PSP: grasp reflex damage with exaggerated holding onto objects (try taking away my wife's TV remote or spoon when feeding!)
Child (baby): difficulty in fixing eyes on distant object.
PSP: eye problems include fixing on distant objects (and moving them up and down).
Child: often irritable (later demanding)
PSP: some become irritable and demanding
Child: no bladder or bowel control
PSP: some lose bladder and bowel control (whether retaining or uncontrolled releasing)
Child: Sleeps a lot (babies: may wake often during the night)
PSP: Some sleep most of the time if allowed (some wake constantly during the night)
Child: Easily tires
PSP: Fatigue is major symptom
Child (newborns): unable to regulate body temperature easily (sensitive to temperature changes)
PSP: some (having autonomic dysfunction) will have poor temperature control (sometimes-hot sweaty faces and cold legs)
Child: easy to make them laugh and cry (sometimes uncontrollably)
PSP: often suffer from pseudobulbar affect of excessive inappropriate (out of place) laughing and /or crying (emotional incontinence/lability)
Child: knows nothing of modesty (also unable to clothe themselves)
PSP: some have a decrease in modesty (also lose functions to dress themselves)
* Applause sign (test)
The applause sign refers to the tendency of some patients to continue clapping their hands in response to instructions to clap three times. Initially, the sign was proposed as a way to distinguish progressive supranuclear palsy (more than three claps, or a positive applause sign) from Parkinson disease (only three claps), although subsequently a positive applause sign has been noticed in many other Parkinson-plus disorders. To elicit the sign, the clinician asks the patient to clap three times as quickly as possible and then demonstrates the clapping. The patient’s response is normal if he or she claps just three times and “abnormal” if the patient claps more than three times. The exact cause of the abnormal applause sign is unknown, although many believe it could be related to frontal disinhibition (dysfunction of fronto-subcortical relays)
Wonderful reading Strelley! What you did forget, is the sulky teenager phase!!!
Having to something different than what is planned, just has you are leaving the house.
Wanting to sit in the most awkward place when out.
Selective hearing.
Ignoring everyone and never looking any body in the eye.
Sound asleep all evening, then having to read that interesting article in the paper that been there for the last three days. Then not actually reading if you stay up while he does!
No interest in anything or anybody, unless England are playing Rugby against somebody.
Thanks for your added insights with respect to "the teenage phase".
We trust those with PSP will be not be offended by these comparisons, but be reassured that we care for you "as carers" and loved ones. We never stop loving our "babies or teenagers"!
I think you have summed it all up very succinctly, it could be my husband. Sadly though I have to add moments of aggression to the list as far as he is concerned.
We had a very bad night last night where my husband was trying to get out of bed, throwing all the clothes off and acting in an almost demented way. All attempts to control the situation were met with threatening behaviour and punches. I had to leave the room to allow him to calm down. He finally settled at about 4am and slept well and he has been perfectly ok today. We had a party with friends and family for my husbands birthday, he was 74 on 8th May, so it's not all bad.
The analogy with a child or baby in this behaviour would perhaps be - is he cold, tired, wet or hungry.
Id like to read more about the applause sign - Can you direct me to some Internet sites to read more - It something that my husbands neurologist does or did) amongst a series of small checks done every four to six months, and I never understood the significance/reason til reading your post.
I've copied the following links: One is a video and the other is the latest conclusion about the sign NOT being specific for PSP, but still useful as one of many tools to show frontal lobe damage. (Hope the links work when I exit from this site!). Most of the internet sites are repetitive with respect to this subject.
those links work Strelley - I have saved them to read later - too tired this pm as have been playing bridge! Mary
My friend has PSP. I have noticed that he can be easily persuaded to do or not do things like watch a TV show. He seems less confident in his judgement and this comes across as very child like. Is this typical?
in reply to
The behavioural changes resulting from PSP (frontal cortex/basal ganglia and midbrain damage) can be quite varied. What you describe would certainly fit within the spectrum of such changes. As time goes on, they may become more exaggerated.
Certainly true. I have watched my twin grandchildren develop and my father deteriorate at the same time - bitter sweet. He shows all those elements you have described. The boys, at 4, are now way ahead - but it's lovely to see them with him, they love showing him their toys.
I hear and understand what you are saying. My mom usually says the same but I hate it. I know my dad hates hearing it.
Yes many symptoms and physical aspects may feel as if a caregiver is taking care of a child but the thing with psp (or at least in the case of my dad) you are very aware of who you are, who is around you. You still have a sense that you are an adult trapped with this aweful illness. Which is why psp patients when able still try to be as independent as they can be.
I can see my dad cringe every time some compares him to a child. It feels like they are chipping away at the few things my dad has left and able to control.... his dignity, his manhood, his adulthood.
Thank you for your thoughts and feelings about this subject.
I agree with you that we should never tell our loved one who is suffering with PSP that they are acting like a child (even when the temptation is there). Their behaviour is induced by the disease and we have to constantly check ourselves with this fact. Maintaining the sufferer's dignity is paramount. Sadly, carers are not perfect, and some behaviours test them to the limit. Just as children have parents in despair sometimes, many carers of those with certain diseases that affect behaviour and habits, can end up frustrated. As implied in one of my replies above, we still love the one we care for, but often do not "like" what they do. It must be terribly difficult and frightening for sufferers to sense the changes happening in their "heads" and "bodies" and have no ability to curb or control those changes. I know that loss of independence is my wife's deepest daily regret and it brings her much sadness (which she tries to hide).
Take care as you look after your dad (and of course, your mom, who must be trying to desperately cope with seeing what this disease is doing to him).
Years ago in my work at a hospice, I ran across a short article in Readers' Digest (do those of you in UK know of this magazine? Good for quick reads and humor) that described caring for a baby. You felt all these "warm fuzzies" because who doesn't want to care for a baby? But at the end of the paragraph, it is disclosed that the "child" is actually a helpless old woman - toothless and demanding, crying and yelling. Unless you love this person, those "warm fuzzies" go away. Who looks forward to changing diapers, feeding puree, etc. to someone in old age that you don't love.
That has been my experience with hospice workers. They can "love" in spite of . . .Those unusual nursing home workers who can "love" in spit of. Yes, I know. This has nothing to do with PSP and yet it can have everything to do with PSP.
My husband's Memorial Service is Saturday. The planning was very therapeutic. I'll be thinking of all of you! And, Jimbo, most of all you - because we are using your post on Hope.
Caroline
Dear Strelley,
When I read the first few words of this blog of yours, I was not able to open it for a couple of days as it 'hurt me' a bit. I was frightened of what I may read. I never 'saw' my Dad as being infantile, I saw him always as being a really ill adult who was suffering greatly.and whom needed great care, understanding and kindness. It was I who felt 'as a child', with that feeling of being so helpless, and lost, not knowing where to turn to find support and treatment. Always, there was the knowledge that he was there, somewhere inside and I used to hope to be at hand when he was able to show it and 'touch base' with me again. If we think in terms of regression, which is what I think you have described, then I think this happens to most of us as we get older and succumb to body wear and tear and disease. What is so cruel with this disease is that the mind does not keep pace with the physical complications..No, I never loved or saw or, I hope, treated my Dad as if he had become like a baby again; it was that love given with full awareness that he was an adult and suffering, and showing amazing courage and grace. He was so bewildered and frightened by his increasing loss of control of his life and this too was so heart-breaking to watch. Yes, I fed him puree but it was adult food, just made into a form that a disabled adult required to have for nourishment. It was flavoured as for an adult, not a baby. It used to drive me mad in the nursing home when they did not add sugar or condiments to his food. Actual baby food is sugar and salt restricted and therefore bland, by the end the taste of the food was very important to encourage him to eat. It was something for him to look forward to and I used to make him meals and treats which he had enjoyed with us in the good old days. I think you may have hit on something important though, maybe this is the mind-set of some of the carers in our nursing homes and thus reflects on the way they treat their residents.
in reply to
Dear Nader
I am so sorry my post was disturbing and discomforting for you to read. I do apologise sincerely. I guess I just wrote a list in reply to those who had queried this side of the disease. I should have taken into consideration the emotional side for the carer (and of course, the sufferer). I wrote a reply to "jessybx19", who also had concerns with how we treat our loved ones when we see certain behaviours. I also wrote a reply to "Heady" about my concern that we do offend PSP sufferers with such things, because we love them and want the best for them.
With respect to your final comments about carers in nursing home, I agree with your concerns. I have tried 2 short respite sessions (so that I could have a break) for my wife in nursing homes. I was very disappointed and my wife just did not like them and did not want to go again. It was very upsetting for me to see her treated as "a one size fits all" mentality (for example. treated as if she had dementia with other residents around her). Fortunately, I found a great respite place that is run by the Multiple Sclerosis Society, where my wife felt much better.
I too am sorry Nadar, that you found Strelley's blog upsetting and therefore mine.
I actually found Strelley's comments funny. Perhaps, because it's my husband that is a sufferer of PSP and yes, first and foremost he is a man. I think most women would agree with all the comments made, that their's is like that. My husband could (can) be a very stubborn and vexing man. He could quite often behave like a "child". Why should that change, just because he has this terrible disease. Why should my attitude change in dealing with these problems, just because he is ill.
Strelley pulled me up on my reply (quite rightly!), but it was meant very much tongue in cheek, just came out wrong, for which I am sorry.
But it did make me think, yes, I could relate to every single of Strelley's comments and I do get very frustrated by them all the time. Like he says, we look after our children, unquestionably and love them through all the trials and tribulations of their upbringing. We now do the same for our spouses or in your case your father. It has given me some strength, knowing that I bought up two children, that have grown into lovely human beings. So, I must have done something right, translated means, I'm not doing too bad a job, looking after S!
S and I have to laugh when we are putting on his "nappy", (still only at times we know we may not find a loo!) he says his my baby. Sorry, it's the way we cope. No disrespect is intended or taken. What I want to do, is find a dark corner and scream and cry. But that can't happen!
Everyone on this site is in a awful place, we all cope in different ways. So please don't get offended, it's just us letting off a bit a stream, to people who know what we are going through.
For me, I find the symptoms hard to describe and admit the way you do. In one breathe I certainly get what you mean - for it takes tender loving care to look after and support someone with PSP. But then I find it is also on a different level - not childlike or even adult like - so hard to describe. Its sort of like having part of the person you loved, in the body of another from another place. My husband when he was first was diagnosed - described PSP like his greatest fear - to lose his vision overnight.
I think your description of having to care for the person with PSP, that is about having the same person there but in a different body, really quite accurate. You are right , it is hard to describe. I was interested in what your husband said when he was first told the diagnosis. I never knew quite how to deal with this side of things with my father. He was within 9 months of leaving us before we had a diagnosis but I knew he could understand a great deal, even up to the day he died. On that last day, when he had suffered so much and I asked for morphine to ease his pain, as he drifted off, I held him close and rested my head against his and told him he was so loved and had lived a good life. Then, I again told him that he had a brain disease ( I had always told him this so that he might understand what was happening to him) but then, this time I told him that there was no cure, that there was nothing to be done to make him better and that if he could he was to 'let go' and go and join nanny (my mother) as she surely was waiting for him on 'the other side' and that she wanted him. He was 97, and honestly his suffering was beyond endurance, he had had six years of it, I felt the best thing for him was to get release. Whether I was right or not, I do not know, but he did not wake up again. Up until that point, I had never told him that there was no cure. It actually took me time to accept that myself and I used to tell him that we were going to see another consultant etc to get help; but in the end I told him the truth. It was almost as if in those last moments that I gave him the power to decide whether to fight on or to opt out. I don't know, in moments of high stress the mind thinks strange thoughts, that's for sure.
Dear Heady,
Yes, you are correct in saying that everyone on this site is ' in an awful place'.
I took no offense from you or Strelley or any one else on this site. I know that no offense is meant and so none to be taken. We are all struggling on as best we can in our own way. No apologies needed AT ALL. I think that maybe my reaction was something like what happened when my daughter, who when she was younger used to show me the terrible ulcers she had in her mouth and say to me 'Mum, look at my pain!' She has Behcet's Syndrome which causes these ulcers. It is just that I think the list brought together so many symptoms and 'brought home' to me what we are all enduring and the pain and heartache I went through with Dad. Of course I knew, it is simply that I needed a bit of courage to read it and see every thing down in 'black and white.. He has been dead only four months and it is taking me some time to recover. Perhaps too there are different emotional experiences between husband and wife caring and parent and child caring. The whole scene is very complex. Best wishes, Anne xo
I know the raw pain that you are going through after losing your Dad. Mine died 12 years ago, secondary liver cancer. They never found his primary! I don't know how to describe my feeling, except, it's feels as if someone took my back bone out, my safety net had gone. Who is there to catch me, when things go wrong. Oh boy could I use him now! But at the end of the day, he would be far too old to be able to help. I am surviving without him, the world is a lonelier place without him in it! I suppose you just get use to not having them around. He did die in turn, that is all we can really wish and hope for. Imagine the pain for our fathers if we had gone before them.
You too, will survive the death of your father! I know this disease is awful to watch, at least cancer is swift. You have the knowledge that he is now at peace and away from the "....." PSP!!!
Strelley, good work! Now I think you need to do one comparing PSP to teenagers-especially ones with ADHD.
Teenage brains develope back to front pruning along the way and the prefrontal cortex is the last part of the brain to "complete". The impulsive behavior, doing things regardless of consequences, inability to control blurting things out even if socially inappropriate are both teenage and ADHD issues and along with other executive functions inhibited in PSP patients, exacerbated in ADHD, and not fully developed in the teenage brain.
Bitter irony that both my and my son's ADHD issues that my PSP guy found intolerable he now exhibits.
I will add this to the comparison : like a child, although able to do something himself, the patient will instead just ask the caregiver to do it. For example, I told my husband that the TV remote was right next to him on the table, but he did not want to have to feel around for it, or did not think to raise his recliner so that he could reach it. So rather than solve the problem himself, he called for me.
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