Is depression an inherent part of PSP or do some PSP sufferers not experience it?

[LyndaEllis]

[NannaB]

Hi Lynda, my husband was diagnosed in 2010 and thankfully, so far, he doesn't appear to have suffered from depression. He still manages a funny humming laugh when he hears or sees something amusing and never complains. His character hasn't changed; he was always kind, never showed anger or frustration and was always positive. If anyone asks him how he is, with difficulty he always says, " I'm fine". Every night I talk over what has happened during the day and ask him if he thinks it's been a good day for him and he always replies with thumbs up or manages to say, Very good ". We still have a long way to go on this awful journey so hope he never suffers from depression in the future. To have to cope with that as well as PSP must be awful.

[Hidden]

Hi Lynda

Not sure if the following is any use to you, but I'll ramble on.....

There's often confusion about "depression" in PSP sufferers. It appears that some doctors treat sufferers (unsucessfully) for depression when in fact they have "apathy". There are medications to help with clinical depression but none for apathy.

It has been shown that about 90% PSP patients will have "apathy" and not depression, because it is associated with cognitive function ( which is impaired in PSP. Depression is not usually associated with cognitive impairment). In Parkinson's there is a far greater percentage of sufferers that have depression. (It's quite rare to have apathy plus depression in PSP)

So, to answer your query, not all PSP sufferers have depression, even though it is described as a prominent symptom in some literature. There remains debate about this fact, because of the difficulty of distinguishing "depression" from "apathy", with the testing procedures available. Also because of the definition of apathy and depression. Apathy shares many behavioural patterns with depression.

Incidently, some forms of antidepressants actually have some benefits for some symptoms in PSP, but the medication is not being used for depression. Doctors do not know why antidepressants actually work this way.

In PSP, apart from problems with the chemical messenger (neurotransmitter) dopamine, there can be problems with other chemical messengers (like serotonin) that are associated "clinical depression". However, in PSP, this is still unclear.

Unfortunately, giving antidepressants to PSP sufferers (for whatever reasons) can often be counter productive. This is due to the many "possible" side effects that actually mimic some PSP symptoms.

In our survey of first symptoms in PSP (that we did a few months ago), personality changes were high on the list (as confirmed in literature about PSP). This included "apathy and indifference and mood changes"

On a personal note, personality changes can be very hard on the carer and their loved one. Sometimes apathy/depressive type symptoms lessen in later stages of the disease, although being overtaken with other debilitating symptom.

Take care.

T.

[Hidden in reply to Hidden]

Dear Strelley,

What a wonderful reply you have sent to Lynda. It has informed and helped me so much. I have, of late, been thinking of the correspondence on this site regarding PSP sufferers and mood changes and aggressive behaviour. My father has never shown aggression but like NannaB's husband has always been of a gentle and kind disposition. I was beginning to think that I had missed something but my father was caring for my mother even as he was slowly being overcome with PSP, She was in a hospital bed in the living room and me running around them both to keep everything going. My mother was much more difficult, she had Altzhiemer's and died aged 99 and was of a very different temperament to start with. Dad used to say that he felt like ' a bird in a cage', trapped there minding my mother. He was able to hide his severity of immobility very well as he and I had arranged the furniture as props and he hardly got out because we could not leave Mum for long. Sometimes I took him out in the car for a short spin and he was accepting of the state of affairs. His priority was to keep my mother happy and so he did not dwell on his own situation much, until he was forced to as he fell one final time and could not get up and never walked again. Perhaps for PSP sufferers with depression it would help if we could direct them to focus on some activity that was important to them and not so much on themselves. Peter Jones has a really sensible attitude and perhaps this is what is helping him so much . I think that I interpreted Dad's apathy for exhaustion from looking after my mother. I am so sorry that I was unaware of the difference so that I could, perhaps , have been more understanding but I had never heard of PSP at that time and knew nothing about it. My father did have a bit of an arrogant streak as he thought he was a physical human superman and had enjoyed good health all his life, and I supposed I agreed with him; our problem was that we forgot about the brain function and that is what got him in the end! I do love your replies! Thank you, you show so much care for us all.

[peterjones]

hi Lynda ellis I can honestly say I have never experienced it \

and I do not want to either I can still laugh and smile a bit tight around the face doing it but never the less I do it I have never let psp worry me because what will be will be I have had my share of falls this year but never mind but no depression mate

sorry I cant help you ha ha take care matey peter jones queensland Australia psp sufferer

[loppylugs5]

You are not alone,my husband diagnosed 2/3 years ago contemplated suicide before Christmas because as he says every day he feels a bit worse.He is RC so I went to a priest with him he is now a bit more cheerful and is agreeing to a short break hol in April I try to remind him of the good things that happen but it does make looking after him more difficult so I feel for you.Depression is contagious so look after yourself.

[Keith246rk5]

Hi LyndaEllis iwas diagnosed at age of 41 and though had been unwell for some time so not quite sure when PSP kicked in well we can roughly pin point it

i have a had a rapid progression of the disease and have suffered a degree of apathy but around September i started having symptoms which i am on anti depressants for low mood some other things

my GP said hardly surprising considering what I've gone through we have had to work carefully as the combination of meds it narrows it down to just two anti depressants one of which made things worse

yet at times i can be so positive share a joke and still laugh at life

my cognitive side has rapidly deteriorated prior to this where i am easily confused can't take on board too much information mixed the oven up with the fridge struggle with word finding etc i have outbursts at the family over the littlest things used to be very easy going now like living on a knife edge for family in case dad goes ballistic

have had anti depressants double up there att start of january mood slightly improved sleeping better as was a night stalker 3 hours a night if lucky so will see how things go

don't know if thatbhelps you out

thanks Leith

[Hidden]

My mum did not openly have depression but fought everything with gusto. The only thing that she ever complained about was not being able to see properly . To combat the lack of speech she just picked her words carefully and gave brief but clever and witty answers . She laughed at herself and everyone that met her was moved by her determination

She was more emotional and I guess that is probably a case of laugh or cry. She laughed. I have to say that I protected her from depression by always being positive and keeping her occupied and giving her achievable targets.

It's the only way I could deal with it really but we are all different

Best wishes

Dianne x

[oops54]

hi lynda long before my husband was diagnosed with psp he had a change of personality, couldn`t see the funny side of things he seen things the way they were not meant to be ,he was offended by almost every thing that others would brush off.now I think maybe it was depression I wish he had gone to a GP earlier but after he was diagnosed ,they put him on an antidepressant. regards christine.

[wifemo]

Hello LyndaEllis -

Looking back, Tony's mood changed long before diagnosis to what Strelley rightly calls apathy. He suffered from frustration sometimes, but it was noticeable he didn't laugh at much - except for one carer who managed to make him laugh by wearing a silly hat one Christmas. After that he could make Tony laugh at something silly every time, but he was the only one. Occasionally something on TV would catch him, but not very often.

I agree that true depression must be heart-wrenching for the carer to watch.

Mo

[jimandsharynp]

We believe my wife started with PSP in 2008 or 2009. She has never had depression and/or aggression to this point. Although her swallowing, eyes, mobility, etc. have increased no signs of psychological changes are detectable. We stay in great spirits by NOT looking ahead, wondering what is coming next, or what stage she is in. None of that can be altered so time spent on it is time wasted. If your loved one is in the early part of PSP or just given the news I would imagine there might be a bit of dispair. If you start focusing on giving love to them and keep telling them you are there for them and between you both you will get through whatever is ahead it might help. I think the attitude of family is important and reflected in the person with PSP. Just my opinion.

Jimbo

[laroux]

My husband has not really been depressed, but has had fits and bouts of real frustration. He's asked me to get a gun and shoot him, or threatened to go hunting and not come back. That's sort of the "red neck" character that is a part of his personality. I never really interpreted it as depression as much as shear frustration, and that is completely understandable with this disease.

We will see though what happens...I have made arrangement for an assesment to move him to a care facility. I can no longer keep him safe, with me working full time and homecare only here 1/2 hour in the morning and an hour in the afternoon. His balance has become so very bad, falls and bangs into things all the time. Not only that but when he gets a notion to do something, he doesn't take his lack of ability into consideration. I found him out laying in the cold snow, thought he would fix the Christmas lights, found him outside in -16 degrees trying to shovel snow! Every now and then he goes out to the garage, found him down out there a few times too. Not only that, he requires help with getting in and out of bed, several times a day, and cannot dress himself or do many of the things we take for granted. I took an 8 day respite after Christmas, but found 3 days after he came home I was sleep deprived and short tempered. I hate it when I become so miserable, it's not fair to anyone. Anyway, I am dreading to have the conversation, I hope it doesn't trigger depression. Oh sigh...

joan