The most enjoyable memories and experiences in my life I associate with the senses of smell and touch. That stopped when my husband developed PSP. Instead of being able to enjoy and appreciate time, places and people with these senses my sight and hearing are always on alert.
Times like Christmas, Easter, birthdays, anniversaries I need to be on guard. In fact any event John once enjoyed, or feels others could enjoy without him - he now acts in a manner to squash their existance - So police and medical authorities are involved. The safety of me and our daughter get top priority. Today it started. I long for it to end...
Regards,
Alana - Western Australia
Written by
SharonAB
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I understand perfectly where you are coming from and I am with you every step of the way.
Take heart, you are not alone.
Kindest regards.
Dorothy T
All I can say is you know each psp phase won't last forever. Hang on in there but also you have to know that no one expects you to do this all alone. Peace to you and your loved ones. Xx
I, too, perfectly understand. Every single word, every single description. Many many years in the identical description and I know well the cause.
Take as good care of yourself as possible......you must find a way to survive this behavior towards a time when you can retrieve the person you were. I care.
My husband hasbeen diagnoised with psp for a year now....but has had symptoms for several years. There were times that I was ready to leave him. It just got so bad. His senceless yelling and accusing was hard to live with. It finally passed. Now he doesn't complain about anything, but then again he is getting much worse, fast. I'm thankful I stuck it out. He really needs me and our daughters. God has bought us so close in this devistating time. Our time together is more precious than ever. My prayers are with you and your daughter.
Oh Alana, my thoughts are with you. This disease is the pits, I wouldn't wish it on my worst enemy! Please, please make sure you are getting all the help you can. Don't feel guilty about anything. Everybody knows you have done your best and some more.
I'm really not sure who did the evil deeds in a previous life, the sufferer or the carer, both of us are been tested to the full!
I really hope you get the help you need from the authorities and try and have a peaceful and more importantly safe Christmas.
Dear Heady, On a lighter note... On Friday 13th a friend asked again ..." If I have had any dreams yet of what busload I must have run over in a former life, and how many mirrors I have broken ..?'
My response was along the lines of... "None yet - but I did walk under a ladder and crossed the path of black cat coming here....
Dear Alana, my deepest sympathies. You have been so giving on this site; I wish I could help you in return. For what it's worth, from half a world away, my hope that you find your way through these hard times to better ones. Peace, Easterncedar
Alana, sorry to hear these facts from you. If I were closer I would come over to give you a hug and some encouragement. We all need that as the unsung heros of PSP. Hang in there and air your frustrations here on this site. We at least have each other which is a real comfort. This disease must not take our joy or peace and if we are determined it can't. Having the support of this group helps keep me upbeat. Thanks to you all. Who thought a man in Florida, USA and an Aussy or two could comfort each other?
This evening took our 10 year old daughter to visit her father (and yes inside was a little scared..). Until tonight John didn't want to see Chloe Christmas Day (but wanted us available incase he changed his mind!!) and our lives were off kilter - I didn't know what had caused the most recent... Still not really sure about it all - but part is explained with the T shirt John purchased and gave to his 10 year old daughter. Across the front were the words FAIL FAIL FAIL and the picture of an 'Angry birds green pig. John thought it was a fantastic item, absolutely fantastic, and wasn't happy when Chloe didn't know what to say. When John gave the item to Chloe he was also walking around unaided, not shuffling, and spoke in a clear articulate voice. Two weeks ago he found it hard to move at all and his voice close to inaudible - try explaining that one to the average person!
- John seems to latch onto things that represent 'bad taste' and takes on the emotions they depict - and the same time often it makes him more physically able.
Today was one such example, for when I took the Tshirt and folded it up and said to John it was too small for Chloe, and spoke about how he may not have realised how quickly she was growing (yes, it does fit but...)- John immediately became his old self, and the rest of the evening continued as if the last several years of pain and more recent events never took place.... As the time progressed over the following hour John was obviously finding things harder to speak, move etc
I know that some symptoms of PSP will be variable overtime. Sometimes, after stimulation (like a new visitor) the sufferer may speak more clearly, or even move "better" etc etc. However, I am suspicious of John's ability to move around unaided, not shuffling, and speaking clearly, when his symptoms have been moderate to severe most of the time.
While I think you have described his cardinal signs of PSP (like vertical gaze palsy), I'll throw you a couple of references about Pseudoneurologic Syndromes (like PseudoParkinson's or psychogenic movement disorders)
It is a path I certainly felt and still feel is relevant in John's condition - I asked Neuro to consider - asked to read scans, have them interpreted to me, asked to view reports to how diagnosis had been made, how clinical asumptions were made, also drugs - even asked for placebos to be used - unfortunately none forthcoming and suggestions dismissed.Tried getting 2nd opinion. Then the doors were quickly closed, Yes, I do still have suspicions on diagnosis. PSP v's Pseudolike PSP ++, And the large degree of variable behaviours and movements that present in John - long term friends with many years nursing in similar fields to John's disease who have seen also reasonably question. John's father was diagnosed with Parkinsons - had it for 40+ years - I thought his eye movemts were like John's- which lead me to asking many a question - you name it.. - genetics, environment, pseudo (copy) disorders, Parkinsons disease, depression, Picks disease, even non-viralent CJD and alcohol related diseases. Dismissed by medical .. A second opinion and infomation to establish first diagnosis would really be valuable to my understanding and predictament.. Is it possible to obtain, extremely unlikely...hence I am reasonably starting to draw my own conclusions...
I am so sad to read this Alana. I have many happy memories of celebrating Christmas with my family but most of them are dead now o of my nieces called in last Friday with her son = father + step mom = my sister was previous wife she died of CA of oesophagus & that was pretty nasty - too late for any help for her - her youngest daughter was the main care giver & now she live in Geraldton so this bunch of the family were going up there. I remember a happy time spent in Adelaide last year with a distant cousin who asked my husband & I to Christmas lunch that we all enjoyed very much. My husband & I enjoyed lobster yesterday that he bought at Kalis - he is not keen on lobster himself so it was manly for me! I had bought the movie Life of Pi that we watched - beautifully filmed - I am reading this book on my eReader. My husband is now searching for the book. But we have downloaded several movies so spoilt for choices. Happy new year every one Mary
Interesting to hear the connecton people have with one another and places. You mention - Geraldton - I lived there for a while (at Sunset Beach) when my parents were into remote sheep station farming. - I understand the crayfish at Abrolhos Is. off its coast are no longer as plentiful in fishing as they once more (heard pearl farming has now started!), however I presume that is where Kailis Bros still go- or is there now at another spot??
The 'Life of Pi' I am yet to see - Will have to visit the local DVD store to hire as you are the second person I have recently report how beautiful it is to watch.
Yes The pearling industry has been going for awhile there my niece was given some beautiful black pearls by her fiancé. If I can find the web site for this I will post it so u can see the jewellery they are making from pearls there. I don't know if Kalis are there for the pearls but I'll have a look at that. Wishing u a peaceful new year mary
Not sure what you mean by big help as for me its been over stages. For example- I joined up to a couple of Carer Support Groups - one through Red Cross, the other Alzheimer's - (who have a support group for Neurological Conditions for Young Carers) , Went along to sessions one day a month for 4 months. I could see the value of attending to hear the stories of others to feel I was not alone. Then I found out how many years some had been attending and was horrified with the thought of being in the same place in 10 years time. Felt I would by that time have no sanity intact...
Also got to a point where I was living on three hours a day sleep, and then having to rely on a week respite to sleep during day whilst daughter was at school and throughout night to recover instead of using the much needed time to enjoy company of daughter and others and do the normal things of life..
Dear Sharon...I'm hoping the score of replies you got from all the caring PSP carers , all heroes in my book, have managed to calm down your overwhelming concerns for Dear John who seems to be leading you up the garden path to the nearest mental institution!
Why play his game?
I've actually been waiting for Tony Strelley's in-depth diagnosis before joining in what has become your "Ain't it awful" forum. Or as you rightly say 'soap opera'. Don't forget Sharon that almost 100% of the heroes on this forum are actually living side by side with their loved ones PSP and are painfully watching them daily disappear inch by inch, as we say, 24/24 &7/7.
You are not.
For whatever reasons, you Sharon rightly chose at an early stage in your husband's PSP to write him a "Dear John " letter. (The good-bye letter fiancée's and girl friends wrote to their overseas GI boyfriends terminating the affair). You put him in an nursing home or institution to be looked after.
It was your choice and to a certain extent, I think Dear John took it as if you'd served him with divorce papers.
Obviously any love left flew out of the window, then and there.
And from what you have been telling us in detail over the past year it looks like a very acrimonious 'divorce case'
we're into!
I can't recall how many visits you make to dear John each week....try cutting them down by half. He may be happier to see you less often. Keep your distance .Pity for your daughter to see her Dad in a bad state.
Excuse my 'hard ball' approach Sharon but like Tony, I think he may be winding you up in his inside anger. Or rather pathologically putting you on.
Whatever, keep us all posted about dear John, if it helps keep you sane!
My husband is not in a nursing home or institution. He is now living alone. John left the family home because of side effects and being on a continual 'high' - it is not unusual for him on some days to be mobile for 16-20 hrs per day, he does not switch off and most times does not sleep and there are other side effects .... We are all caught in a difficult situation as John & I have been advised by his neurologist it is his medication that keeps him awake and without it he will be totally paralysed 24/7.
Organisations now involved in John's welfare have advised because there are difficulties regulating his medication - at times he is totally paralysed for hours and at a real risk of suffocating. However because he is under 60 years old he is not being admitted to residential care at this time & full-time care in not being provided at home. The State governent health and legal departments have made the decision.
Because of John's 'awake' times - he travels extensively & it is not uncommon for him to now travel up to 70 km per day on an electric scooter on main roads. Distances varies significantly from one day to the next.
I would have loved to have continued caring for my husband up until his last breathe, and altered my life and our home dramatically to do so. Ironically - even as I acknowledge it will now never be an option- I still think as John's wife it is my responsibility to do so - particularly as we shared such a beautiful marriage together. He was such a generous caring man before some aspects of disease and/or medication took hold.When I read about the wonderful carers who use this site I admire their abilities, and wonder if it was not for my husbands medication would I also have shown the same strength they do?
Yes - there can be some strange great unknowns just around the corner with the diagnosis of PSP. For it is a clinical diagnosis with some difficult qualities and behaviours that I find difficult to fathom....
And I do see my husband the least possible, I think it is coping strategy we both use. However under Australian Family Law our daughter must have set hours and times each week to be with him for the rest of John's life irrelevant of his condition and her wishes are not open for consideration. It is part of recent legislation that I am told is designed to keep a parent/child bond. I find it heart wretching for all three of us that she is escorted to see her father in such trying circumstances, however should I breach this happening the penalties are extroadinary.
It is probably for that reason that I continue to use this site - as I do not think our legal and health system are making provision for our daughter and the natural bond she should or could have had with her father. How that is achievable to maintain I have no answer.
Perhaps if I had followed through with more questions in the early stages and ensured John's wishes and future plans were well documented when he started to become unwell, for it is now ten years ago our family dynamics would not be what they now are.
Dear Sharon...thank you for filling me in on the details. A real sack of worms! And I don't envy you or anyone down under in similar circumstances to yours.It appears the Health Authorities you have to deal with go by their book without humanistic concerns.Terrible.
I think I have to agree that his medication is playing havoc with his moods.
But Sharon....there is NO known cure or medication yet for PSP/CBD disease.
What in hell are they pumping into him for this hyperactivity? I just cannot believe that someone who supposedly was diagnosed ten years ago with PSP can travel any distance on an electric scooter. Even if he's high on coke! And no sleep!
It is inconceivable.
Sharon,have you had time to check out Tony Strelley's food for thought's?
In my book, if dear John really has had PSP for 10 years he should have been in it's final stages years back. But then again he is still young....PSP isn't usually a young persons disease. Everyone's different.
What he IS suffering from is the mystery,Sharon.
And as you rightly said its just plain cruel for your young daughter to have to sometimes see her Dad in such a sad state.
Again Sharon I reiterate all the heroes who are thinking of you.Keep calm and carry on.
Medication playing havoc - I agree with you, What's John on - basically different types of Parkinson's meds - So does it makes sense to me either - in relation to PSP- no.
So its become a bit of a banter amongst my girlfriends who love the the line from Estelle Reiner "I'll have what she is having", even to a point we've said - Lets book a flight to Katz's Deli one day...(Yes - warped weird humour keeps us sane...)
I went to see a counsellor today , had a call from a friend this morning and another yesterday - Yes - they keep my laughter and sanity intact...
re: John's travel by scooter - I should have said Gopher - for its a 4 - wheeled machine - not a 2-wheeler which is probably what you visualised?? John doesn't have the balance or coordination for a bike...
In 12 hrs time I am required by our legal system to commit for the rest of John's life what/how/when,, etc of plans for our daughter and me... So yes - for that I am bitter about PSP or.? - whatever it is - its a disease I ... (that one I can not describe)
I checked out Strelley's ideas and sent him a reply direct a while ago (that why it probably appears I haven't considered etc..). I had an in-depth look at it and he is on a track that I thought many years ago and have asked for consideration etc.. Unfortunately though its an area that my husbands support team and extended family are not open to consider.... So it is a closed door ...I don't have it in me to try anymore...
N.B. John's father was diagnosed with early onset Parkinson's from his mid forties or fifties (not sure exactly when) and lived til he was 79. At one point he broke his neck had it pinned over three lengthly ops whilst he had pneumonia - died on the op table each time, weighed less than 40kgs for ages (was over 6' tall)... and then went to live for another 10 years...(and you gotta laugh it happened as a result of endeavouring to cross a 7 lane highway to get banana's) Let's face it - real life sure beats the movies....
So do/did they have the same disease ??..... I don't know - tried for answers, asked those supporting John to consider, gone round in circles...
For me it is at an end point for PSP - though I write a lot on this forum the door is almost closed. For I am starting to close my mind to the last 10 years and calling it history to make my life and my daughters life happen for a positive future....
Wow, part of your post really gave me the chills. My mom is just 59 and was recently diagnosed with PSP. But I'm now thinking she's had for nearly 5 years. That's when her verbal and sometimes physical abuse of my father began and she was NEVER ever like that. illogical anger and arguments on a daily basis with my father. Who really has became her punching bag so to speak. His self-esteem is now completely torn down because after so many years of hearing how "no good" he was he probably started to believe it. She has had clinical depression since I was 2 or 3. She would have very serious bouts of depression and even had shock treatments that altered her personality in the 90's. But she never got mean back then. Because of her psychiatric issues and extensive history with depression and debilitating anxiety....her PSP symptoms got lumped into this category. Everything is clicking now (in my head.) All the times you could just not rationally explain something to her when she became angry and frustrated. All the falls...etc. She was admitted to the Psych wing at Iowa City hospital in November and they just moved her to the geriatric wing last weekend. She lost her ability to talk and communicate. Such a terrible disease. And now my dad is almost paralyzed not knowing what to do with himself after being her 24/7 caretaker for these past 5 years. I wish you luck.
It's good to hear you are able to take a leaf from my novel. Unfortunately it can sometimes be both reassuring and frightening when you read things and think - us too or could it be or not?? However until diagnostic tools can accurately determine the illness and characteristics, or better still a cure I think we will all be no wiser.
Your Dad must be going through a great deal of turmoil at the moment. He is probably torn between two worlds and that is where his families support is invaluable - continue to be there for him as his daughter, but remember to be there as his friend as well.
With caring - friendships & networks disintergrate (as maintaining friendships, hobbies and interests does take time and energy and caring is exhausting and doesn't leave time for much else) - and it is hard work getting them back again or creating new ones.
So in return - I wish you and your family luck, But neither of us need it - right? RIGHT!
And I probably phrased something incorrectly which would lead you to think I am the daughter but I am the son. My mom was always at me to settle down with a nice girl and have a child. She would say "I want you to give me a grandbaby!" So I finally met the right girl in 2006, but it wasn't until this past year that we had our first child....our baby boy. She now has a beautiful grandson but isn't able to enjoy him very much.
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PSP has taken my sister
An amazing week at sea! 
A photo of a good day
Update and pictue lastt Sunday
Lack of sleep and PSP stage?
