I am interested in what PSP (only) sufferers or carers remember of the first symptom.
Many descriptions of PSP symptoms seem to be generically written, and they suggest the first symptom is usually problems with balance/posture/gait/falls. Then they mention personality changes (e.g. apathy, aggression etc).
My wife had personality changes well over a year before she had balance/falls problems. She also must have started having eye problems (vertical gaze palsy) during her personality change and before her balance symptoms (she used to be a perfect driver, but had a couple of minor accidents, and the side of her tyres often had white from scraping the kerbing).
So, my question is: can you remember what was your or your loved one's first PSP symptom?
(There seems to be over 1000 registered on this community - but I'd be happy with a dozen or more short replies)
PS. I might mention my wife had the very occasional (severe) choking bouts on liquids over 5 years before the balance symptoms - but this would probably be rejected by neurologists as indicating an early PSP symptom (too early?), especially since, even now, she still only has moderate dysphagia.
Hi Strelley, Looking back my husband's first symptoms were definitely personality changes and aggression, then the lack of balance and then the falls. He has never fallen backwards as the experts seem to think is atypical, it's always been forwards and in the beginning quite literally headlong on the ground.
I would have to say he became obsessed with doing something and I could not reason with to change his mind which was not in his personality ,missing steps on a ladders even a step ladder. Rolling his fingers,scratching at one spot and no matter what I said he would not stop until he would bleed or take some scalp off, Lots of saliva and his driving he would hug the center line .All this was for the most part in 2009 .They took his driver licence a year ago (2012) and I really did not mind.His balance was off and it was always backwards. I hope this will help others when trying to figure out whats going on with there love one.
My husband first presented with problems with his fine motor skills. He had trouble picking up small items, he then was unable to release a cricket ball from his hand in the middle of bowling an over during a cricket match. He had some OCD symptoms, he always had to line up his change from his pocket in size order on the side table when he came in. His next symptom was his speech he had trouple saying what he meant even though he knew what he wanted to say - initially we put all these symptoms down to pressure at work as his first neurological assessment arrived at the decision that there was not anything wrong with him. Hope this is of some interest for you.
My first symptoms was sluring of my speach and my handwritting got very small, then
I got a lot of saliva.That was two years ago. I have since had balance and falls problens
but so far I havnt had any problems with my eyes..When I fall ,I nearly always fall backwards .I am always interested in the letters you write , you seem so knowledgeable.
All of what DORDOR has written (My first symptoms was slurring of my speech and my handwriting got very small, then
I got a lot of saliva.That was two years ago. I have since had balance and falls problems
but so far I haven't had any problems with my eyes..When I fall ,I nearly always fall backwards). These all followed shortly after the first symptoms for my husband.When I look back all the signs were there but when you are dealing with some many Doctors and you have never heard of PSP you just keep charging on.I pretty much stood on a lot of Dr's desk top and kept saying not good enough.Its been a long battle to get here and now I just wish I could turn back the clock.
Hi Strelley, About 6 years ago, when my husband was 60, he started doing strange things he would never have done before. He was a perfectionist where decorating was concerned but one day I noticed white blotches on the white paintwork; doors, door frames, skirting boards etc. He had covered all chips and imperfections with tippex correction fluid. If he thought something needed doing, it had to be done then, whatever time of the day or night. Once I was waiting in the car for him and he started to mow the lawn. He filled my car washers with undiluted screenwash and then filled a drinking water bottle with what was left, which I nearly drank. Dangerous driving, slurred speech, backward falls, staring eyes and changed gait followed in that order. (I wrote it all down as I knew something was wrong). He has never been aggressive.
This was over period of a couple of years before we finally figured he wasn't just aging gracefully, but something was wrong.
1) My husband first began losing balance and falling, never backwards, and each could have been easily explained. So he got a cane for himself and went to a physical therapist. Got better. 2) Had trouble with eyes tracking together, so was given new glasses. Got better. 3) Speech became slurred and difficult to understand (though he said he heard it as clear) and handwriting got very small. 4) He loves maps, and one day was giving us directions and was completely confused, even which way to hold the map and which way was north. 5) On occasion he would drool 6) His face would spasm so that he looked like he was growling. It seemed like something would happen to cause concern and he would plateau for awhile, then something else would show up, then plateau, etc. The only things that remained constant were speech and penmanship.
His personality has not changed yet. He has never had any tremor. Has no problem swallowing. Driving is fine.
I tried to find a condition on-line to match his symptoms and only came up with myasthenia gravis. PSP was never mentioned. I hope this is helpful.
Christine47
Thanks so much everyone for your replies so far. I'll make a comment or two a bit later, in case others want to post their experiences.
• in reply to
I noticed my husband was 'different' very subtle things like not leaving the bathroom tidy( always very meticulous before) and apathy which again was atypical ,his balance was off but not major falls more over balancing when bending down. Later in the disease he had some very bad falls but never backwards, forwards or sideways usually.
For him the thing that worried him was a constant spaced out feeling and slurring of speech and untidy small handwriting .
His eyes were the giveaway in diagnosis, his slow downward gaze palsy.
When he was first diagnosed 4 years ago he was still working and driving his car now he can no longer speak cant write has very poor mobility has great difficulty eating (doesn't want a feeding tube) in fact has a poor quality of life although he has never complained and been very stoic and never violent.
I am one of the 'lucky ones' to have CHC FUNDING FOR 24hour care for Doug which will go down to 4 visits a day once he is no longer able to walk,I am blessed with a wonderful advanced nurse practitioner and a wonderful doctor who have made this possible.
Sorry to ramble on you only wanted a brief description of early symptoms didn't you.
By the way thanks for your interesting posts are you a medical man?
• in reply to
Just a quick hello Joey - and thanks for your post. I will make some comments on all these interesting posts a bit later. To answer your question: I was a Medical Scientist for 40 years in a diagnostic setting in a major teaching hospital in Perth, Western Australia (now retired)
My mum began to find it increasingly difficult to remember her words when telling us something 7 years or more before her diagnosis, she began to have falls around 2 years before, but her legs gave way occasionally for maybe 20 years before and we don`t know whether this was related. Her eyes also began to stare more and look as though they were wide open and bulging around 4 years beforehand. All these things progressed incredibly slowly at the beginning. Hand writing becoming smaller and smaller 3 years before, inability to knit approx. 1 year before.
My husband first started with personality changes, apathy and loss of interest in daily life. He would do strange things like make a chilli con carne for dinner and use chicken instead of mince. He became quiet and was not interested in socialising
He was an excellent driver but started to have miner accidents within a short period. He would frequently go over on to the hard shoulder when driving on the motorway. this was so out of character for him. He became very clumsy and was always tripping over things and banging his head on all sorts of objects.
Later his balance and coordination was affected. he would struggle to get up out of a chair. He also had coughing and choking attacks but these symptoms came later.
Sadly he only lived for 3 years from diagnosis at the age of 62 years.
I have had confirmation from the Queens Square Brain Bank that he had PSP.
We so much need more research into the causes and management of this brutal disease.
It was apparent that "something" was affecting my wife due to changes in behaviour & personality changes (becoming apathetic, not joining in conversations etc) but our GP was unable to positively determine why. It not until she started to have falls & balance problems some 2 - 3 years later that PSP was eventually diagnosed.
In hindsight other things had also appeared ie spidery handwriting, reduced dexterity) prior to the diagnosis but these had been assumed as ageing problems
Dictionary definitions give the word no justice at all and are too polite....
My husband's personality changed and was so devoid of emotion unless attention was centred around him. For me it was an emotionally devastating time - I had a baby and soon after needed to be working because I wanted to get away from the totally different person I had married - different values, different emotions, different morals
and yes along the way -
The minor car scrapes and dents to his motor vehicle which before he maintained immaculately, and how he 'forgot' to have his car serviced and brakes fixed and insurance went unpaid.. It was all drawn to light, when I drove his car to work, and in bad weather ...crunch, found out about all and ....John didn't seem to really care...!
Hi There, My husband Richard started with an all over itch and extreme insomnia, followed closely by aggressive behaviour. He also was quiet and slurred his speech. He was fired from his job as an underground coal miner for not following safety procedures. Not long after, He was driving erratically and would brake hard seconds before a stop light. Once he had two flat tyres on the same side from running off the edge of the road. He said himself he felt he was always pulling to the left. We stopped him driving soon after. He would be so vague and didn't listen to me. He would do silly things like check the Christmas lights with bare feet and trod on them and got an electric shock as well as cut feet. It got to the stage that I couldn't work cause I could trust him to be alone with the children when he got angry. He was first diagnosed with dementia in 2007 then once the falls started he was diagnosed with PSP in 2009. He fell 60 times in six months without any major damage. His fall were mostly backwards but now he has no balance in any direction and leans to the left when sitting. Hope this is of interest as all of everyone else's are to me.
i guess the first real syptom, apart from the tiddley writing and the stiffness was a serious fall , backwards down my stairs ... i fractured a vertabrae - that was in november 20067- it took a long time to heal 6 +MONTHS AND WE HAD TO CANCEL A TRIP AROUND THE WORLD --- SO IT WAS DECIDED THAT WE WOULD MOVE TO FRANCE WHICH WE DID IN AUGUST 2008 - THEN I STARTED TO GET STIFFER AND MORE AWKWARD IN MY WALKING ... THEN I SRARTED TO HAVE FALLS - IN JAN 2010 I WAS DXD AS HAVING PD BUT THE DR /NEURO DID THINK IT MAY BE PSP - HOWEVER I WAS PUT ON A WHOLE LOAD OF ANTI PD DRUGS FOR NEARLLY 3 YEARS - I THEN SUGGESTED TO MY NEURO THAT I SHOULD COME OFF ALL THE DRUGS AS THEY WERE NOT HAVING ANY EFFECT - HE SAID OK BUT THAT I WOULD HAVE TO GO INTO HOSP TO COME OFF THE DRUGS - SO I WENT IN AND THE TEST FR PSP WAS DONE - IT WAS BY INJECTING ME WITH DOPAMINE TYPE DRUGS TO SEE THE REACTION - THERE WA NONE SO IT WAS DECIIDED THAT I HAD PSP - ALSO MY GAZE HAS BECOME WORSE
Mum had her first symptoms 6 years before end stage. At first she had trouble with her eyesight such as double vision-she needed extra large print, had trouble with writing which steadily became miscroscopic and she had issues walking down hill-she would keep wandering to the edge of the path and couldn't control it.She had awful problems with days of the week and suffered with insomnia and slurring of speech.She also rolled her thumbs together endlessly. Interspersed with all this she was having a lot of falls. She had difficulty lowering herself into chairs and would fall stiffly backwards into them, rocking dangerously and sometimes damaging furniture in the process. Because she needed to look down completely using her whole head rather than moving just her eyes her nose would stream once she started eating. Funny but it all seems so obvious now, but at the time I just thought it was her age and impatience.
In 2008 or 2009 Dale started experiencing incontinence -- just thought his prostate was acting up as he aged (and maybe that is the case, but we're going to a new urologist this coming week as a referral from the movement MD, so will keep you posted.)
In 2010, he would start slapping his feet to the pavement about 20-30 minutes into a fast-paced walk. He would start the walk normally, heel to toe, but always ended up slapping the balls of his feet about halfway through.
In late 2011, he started falling occasionally for no apparent reason. The falls increased throughout 2012 and the first half of 2013 until he became essentially non-ambulatory.
In 2012, he started drooling profusely and his speech softened markedly. No slurring or stuttering until 2013, though.
He also started this facial tic in 2013.
The only personality change is some depression, but who could blame him? No tremors except occasionally when he tries to do something requiring fine motor skills, and then it's minor.
We'll be very interested in your findings, my friend. Thanks for doing this.
Hi Strelly. Looks like you have a lot of material to go through. My husband Gerry had slurring, handwriting and motor skill issues. He couldn't cut the roast, comb his hair, scratch a lottery ticket and his right foot would paw at the floor before being able to move. He had laser eye surgery but now I believe it was PSP. He would get up during the night and watch TV for 1 to 2 hrs. Fell forward, one time head first down the escalator at the Miami Airport. Also looking back he made some bad financial decisions which he was very insistent on carrying through. He was miss diagnosed (Parkinson's ) in Jan 2007. He just went into a care home at the end of June 2013. We live in British Columbia, Canada.
I always enjoy your replies and thank you for your concerned interest.
The first symptoms of PSP were observed by our optometrist who noticed that June did not have vertical movement in both eyes as the muscles had frozen and she could move her eyes only horizontally and this was a new problem. She recommended we check with our doctor and then to a neurologist and the diagnose of PSP took 2 to 3 weeks. This was confirmed at the Parkinson Research at UBC in Vancouver. That was back in 2005 June passed away 8 years and 2 months later from PSP
H Strelley, my mom Irene's first symptom in 1998 was depression and in 1999 what she called her "muzzy head" which was an hour of double vision and balance problems every morning though this quickly grew to 2 then 3 hours and then never went away. Her voice started to go quiet in 2000. She was diagnosed in 2005 with "parkinsonism" and in 2007 with psp. She passed away in 2010 still able to walk with assistance and even talked on occasion !
In early 2009, I noticed my then 60-year old husband was losing his ability to reason "what happens next". Then he complained of being dizzy and light-headed and began "plopping" when sitting in a chair and had difficulty getting out of the chair unassisted.
By the end of 2009, this carpenter with 35 years of experience was unable to build a simple wooden box. He gave up driving willingly. He had a number of early falls, tho not all backwards. A small right index finger tremor then has now turned into a constant right arm and right leg tremor, AND tongue tremor. I also notice that the tremor occasionally creeps to his left side.
He was originally diagnosed with frontotemporal lobe demention, then dementia with lewy bodies, then alzheimers-like dementia, then PD, and finally, with the addition of gaze palsy, PSP (in Feb. 2012). He's currently bed/wheelchair bound, and is on pureed food and thickened liquids.
Our Neurologist at the University said "Early falls and balance issues are early indicators of PSP. We found that true in our case. Later, eye issues arise. Hope
that helps. There are other symptoms but early balance problems and falls are indicators.
An interesting piece of work you have started. I look forward to reading your comments.
My husband started to noticeably change in 2007 when he became verbally aggressive, would refuse to discuss anything and would be openly rude to people he hardly knew. He wasn't interested in socialising preferring to steer clear of going out. However, when we were in social situations relatives and friends commented to me about how Peter just stared at me and would not make eye contact with them when talking.
His driving also became erratic, which initially was scraping walls and minor bumps when parking one day he deliberately drove into our neighbours wall (fortunately it is a very substantial wall, so the car came off the worst), he nearly got us killed on the motorway, had it not been for a very alert lorry driver we probably wouldn't be here now. Unknown to me he was also having minor car accidents in the States where he was working at the time.
Peter had always had small, very neat hand writing, but it started to become even smaller, very scrappy and he was unable to write in a straight line. Now he cannot write at all.
The first fall Peter had was off a ladder which led to him dislocating his shoulder. At this time he also started getting up frequently at night and early morning wandering around the house in the nude, he wasn't bothered by who else might be in the house.
Eventually we got him to go to the doctor where he was diagnosed as being depressed. By this stage he also had a tremor in both hands for which he was referred to a neurologist, a diagnosis of a benign tremor was made and he was told no treatment was required unless the tremor prevented him from working.
2010/11 saw Peter becoming even more apathetic about life, having many minor falls and falling when just standing up, he didn't want to wash and altogether wasn't caring for himself at all. His workplace also started to comment on his lack of interest and motivation to do his job. He had worked for the company for many years and there had never been any complaints in the past. At the beginning of 2011 he gave up work, being completely unable to travel safely on his own or do his job. PSP was diagnosed in May 2011.
Now Peter requires assistant with every aspect of life. The change over the last 6 years is incredible.
Strelly, This is how our journey began with PSP. My wife first started with slight balance issues. Prior there were two falls which we thought nothing of. I have to say that we cannot relate to those who had early depression, apathy, mood changes, anger, etc. She has the same personality and acts just as she always did. So we spent time at a "Balance Doctor" who couldn't resolve the balance problem. Two days before a trip to the UK she had lunch with a friend and told her the issues. Next day friend called and said "I think she has PD". Our GP was advised and said come in immediately after your UK trip. Meanwhile I looked up PD on computer and noted the wife had some of the symptoms. I had no clue what PD was but on our trip I noticed a shuffle in her step and a slowness in crossing streets. Upon return GP directed us to Neurologist who diagnosed her with PD. a second neurologist said "I can't say if it is PD or PSP (we had no clue what it was) but if you held a gun to my head forcing me I would say PSP. A later trip to University of Florida Clinic for Movement and Neurological Disorders confirmed PSP. Because there were no major "up front" signals (only balance) our lives were normal. I forgot to mention that upon our return from the UK I matched her signature with on from four years earlier on our wills and saw it was much smaller (now unreadable). I am amazed at the various signs others had early on but realize PSP often takes a different path on each patient.
Although not requested wife's current status is as follows. No mobility except by wheelchair, swallow issues, blink rate way down, handwriting nil, incontenance to some extent, constipation, solid foods, clear liquids ok with minor coughing at times, attitude is great, swallow test August was fine, movement and reaction time extremely slow, speech garbled and softer than before, general health and attitude excellent outside PSP.
my mom problem started with urine problem and over drowsiness ,,feeling sleepy all the time and then falling back ward,, and now she cant move without our support
i just re-read my comments and thught i should add that i am currentkly unable to walk without really leanIng on my husband who is maRVELLOUS AND STRONG - SO I USE A WHEELCHAIR WHEN WE go anywhere like shopping or tio a restaurant -- i an so impressed with your research so far and think it will help a lot of us to i be able to compare the very diverse sympoms of PSP
My husband was diagnosed with PSP two years ago. We realise now that he had symptoms for some time before this but they were seen as a consequence of other problems he had: a triple by pass, an enlarged prostate and arthritis in his knees. I found recently the scrap of paper I took with us t o the GP when I decided something had to be done. He was constantly complaining of not feeling well, he lost his appetite ( he had always enjoyed food) , his speech was slower and quieter , ( he was normally very talkative and very articulate), he was more agitated than usual. The GP thought he needed a holiday but we insisted that it was more than that and In fact cancelled a holiday in South Africa and spent some of the money to see a consultant privately, to jump the queue. The GP was very apologetic when we went back with the diagnosis and explained that in 25 years of general practice this was the first case he had seen.
My Dad first presented with mild personality changes and making decisions that seemed uncharacteristic in 2004. By 2007 these were much more pronounced and his handwriting was tiny and illegible. His speech started to suffer at this time also, slight slurring and very bad "word memory". That was when we looked for medical advise. Balance and gait problems began in 2009 and by this time his driving was really suffering also, hugging right hand side and slow reaction times. By 2010 he was having frequent falls and barely talked any more. The few times he did we could hardly understand him. He was still going for walks though he always looked really unsteady and had a few falls over 2009 and 2010. He had treatment for prostate cancer in December 2010 so although he was urine incontinent by then we put it down to that. It did improve temporarily. He also started coughing and choking a lot in 2010 and by this time he cared about no one and nothing, not even my Mum who was terminally ill with cancer. He would refuse completely to spend any time with her or help with her care in any way. Now he cannot walk or stand or sit and I have to lift him and move him for everything and carry out all tasks for him. PSP was only diagnosed in June this year by the gaze palsy.
My husband retired in 2004 aged 65. He had initially intended to stay on at work, however, when reaching 65 he retired and would refuse to say why. I soon noticed that he had slowed down; it took longer to make even simple decisions. Around 2007/8 he started to give up all his voluntary work, watching daytime TV instead. I was still working and it took a while to notice this. Then his voice started to deepen and slow down. During 2009 he started to fall, usually overbalancing whilst trying to reach something. He fell downstairs breaking his arm, it had now become difficult for him to go upstairs without 'hanging on the banister'. Driving became erratic, he had several minor accidents, i.e. scratches and small dents on the car. If I was in the car with him, I noticed that he made odd decisions, it was becoming dangerous for him to drive. One day he just sat in the passenger seat and said 'you drive'.
Until this date he refused to see a doctor, however, the falls became more frequent, sometimes backwards, mainly overbalancing, falling sideways. He now decided to see our GP who sent him to the falls clinic, an MRI scan and then made an appointment to see the neurologist. Lucky for us, she diagnosed PSP immediately (January 2012) - we were spared the many misdiagnoses many here have to put up with.
Walking then became a problem, he first used my arm, then a rollator and my arm. Now it's a wheelchair outside and my help indoors. He leans to the left, the left leg freezes often. He can no longer dress/undress himself and needs help with showering. His speech is almost incoherent and very quiet and slow. He has difficulty moving his eyes sideways and up/down. He is still able to chew his food (very slowly) and swallowing is not yet a big problem. Eating takes a long time. His drinks have to be thickened. He coughs often and brings up slime and bits of food.
He is still able to shave and clean his teeth. There have not been any changes in behavior.
Strelly, we are looking forward to see your conclusions.
The symptom that triggered investigations leading to a diagnosis for my father was frequent falls backward. But well before that he had lost his sense of taste and also had urinary problems investigated as he was getting up so frequently in the night - they weren't linked with PSP but I think now that they may well have been the first symptoms.
Strelley, your question has certainly prompted a lot of varied responses. It has really highlighted for me just how diversely everyone is affected by this terrible disease.
I think the very first symptom was my husband's speech becoming harder to understand and his speech becoming less fluent. My family mentioned to me that they couldn't understand him. I still could, but I often had to ask him to repeat himself, which really irritated him - he often told me that I obviously had a problem with my hearing! Second symptom was that fixed stare which would come and go. My husband has the gentlest brown eyes, and I could often read a lot of emotion in his gaze, but that stopped and his eyes just became flat and expressionless. Third symptom (about the same time as the change in his eyes and expression) was a change in his gait - his stride noticeably shortene and he started to shuffle and not lift his feet cleanly. I knew this was strange, because this was something that he really disliked in other people, so the fact that he was doing it himself clearly indicated to me that something was wrong.
There were some falls, but I think that he hid these from me for a long time. No personality changes; my husband has remained the gentle, kind, funny person that I married, for which I am very grateful.
Not sure if this is related, but my husband developed sleep apnoea for a few years before the other symptoms started. I used to lie awake at night so I could nudge him when I heard him stop breathing. He started to complain about his sinuses and being unable to breathe, and ended up having sinus surgery. I somehow think that there is some connection between his sleep apnoea and his later diagnosis of PSP, although this is very much just a subjective feeling on my part.
Luckily once I realised there was a problem, I was referred to a neurologist who diagnosed PSP as a high probability from my description of my husband's symptoms (my husband was working abroad at the time). We were at least spared the years of misdiagnosis and uncertainty that so many others on this site had to endure.
My early symptoms were gaze palsy and I could not walk properly and my husband said that I had changed a lot personality-wise. I stay in bed all day because my vertical gaze palsy is so bad. This is hard on me I don't want to stay in bed all day. (My husband said that I am agressive and argumentative. Dizziness and brain fog were also early symptoms.)
I am in a care home and I am turning 69 in October. Thank you for all your efforts Strelley. I look forward to hearing the results.
I met him 3 years ago (and he's only be diagnosed in the past couple of months)...I was his secretary... even then I felt there was something wrong... I asked if he was suffering from depression and or ADHD... he was fine talking about work but when he'd tell me a story he would speak like he was drunk (and he wasn't) his words would all slur together... and his handwriting was indecipherable... he also lost confidence...
My mams first noticeable symptoms were the gaze in her eyes. I knew there was something wrong for a while but she had other complaints like macular degeneration, osteo and rhumatoid arthritis. The first time she fell she broke her hip and since then she cannot walk without support (2 yrs). All other symptoms came after this.
Hi, My sister started with walking difficulty freezing in doorways taking ages to walk a few steps,she became aggressive,agitated if carers didn't come on time she would be on the phone going to other residents in sheltered housing ringing their door bells,her eyesight got worse and her writing now in a nursing home after a few falls can't walk at all now speaks very little,and when she does it doesn't make any sense,she also can't focus on anyone or anything,just stares ahead,now has to be assisted to be fed,sleeps for long long periods,sometimes eyes tight shut but she is aware you are there and will respond if you talk to her.I feel she is getting worse now and sadly into the final stage.
I want to add a few symptoms that I had early. Difficulty breathing at night (it didn't come naturally). Dizziness (balance) when I looked down. Stiffness in legs and neck. I always needed to sit down to talk with people, but I didn't look them in the eyes. Head tilts back but my shoulders are slightly forward. Headaches. Toes and ankles need to constantly be twisted & stretched to extremes, foot turns in when sitting. Bad handwriting and could only read for a couple minutes then words get blurry. The eyes were what the neuro's noticed most. I never fell the first year but did have to grab the back of a chair a few times. Hard time driving and making simple decisions like which stall to park in. Forget where i'm going when I drive. Hard to center myself in my lane. Diagnosed this year.
Strelley, I am stunned at how many early symptoms my husband had that others experienced as well. Especially the ones that were easily attributed to other age related conditions. Early on ( 8-10) years ago he experienced sleep, and urinary disorders.Then (6 years ago) seizures with short term memory lapses. Then the personality changes kicked in full swing. Seemed he was always upset about something. Overly critical. His rages were frightening. (Along with turrets like cursing fits). He would say the most socially inappropriate things-even to strangers. It was so embarrassing! His moral integrity and financial responsibleness went south. He had an affair. I moved out for six months until he begged me to come back. He swore things would get better but they got worse. The angry outbursts continued. Always soft spoken, his speech began sounding like he was mumbling all the time. He also accused me of being hard of hearing and told me to get a hearing aid! He would get distracted when you were speaking to him and break eye contact. His writing became miniscule and was not legible. He was always looking down. His shoulders and neck became rigid and his face became emotionless. He always had an careful slow gait from a prior spine surgery, but he became even more unsteady over time. He had trouble sitting and standing-plopping when he sat and losing his balance when he stood. The then doctor attributed this to his seizure medication which he said could cause Parkinsons like symptoms with long term use. He went off the medication but it did not help at all. He was given a dopamine test followed by a Parkinson's diagnosis almost 5 years ago. The RX prescribed had no effect whatsoever so we sought a second opinion. Dr. # 2 said not Parkinsons even though he had now developed a tremor is one hand. It was not a resting palsy. Rather once he initiated a movement i.e. stirring coffee he could not stop. He began walking faster not slower but with more instability. More difficulty standing/sitting. Talked in his sleep. Handwriting worse. Began to lose his balance more often. Doctor #2 said MSA and refereed us to Dr. #3 . By this point he had begun experiencing dry eyes, blurry vision. He too hugged the shoulder of the road and began coming home with unexplained dents in the car. It looked like he was backing into and running into things. Major fender benders not just scratches he could never account for. I kept mentioning this to the eye doctor and he prescribed drops! Dr. # 3 did yet another brain scan except this time the hummingbird image showed up. The PSP diagnosis was not confirmed until he was tested by a neuro-opthamologist. His vertical gaze at this point was severely inhibited. Dr. #3 then referred him to Dr. #4 who is a specialist with movement disorders and very familiar with PDP. That was over two years ago. His falls have increased. Backwards forwards and often sideways. He has had several head traumas requiring stitches and always looks like he has been beat up. The social worker in the ER once took him aside to ask if anyone was,"hurting him" we were showing up so often. He has fallen down the stairs on several occasions so we have moved the master bedroom downstairs and are going to downsize to a one level home. Speech therapy has helped somewhat but he refuses to speak louder in my presence like he does with the therapist. He is started to cough and choke a lot more, ( mostly liquids) though he eats most things. He stuffs way too much in his mouth and makes a mess. Ironic because he used to be a stickler for proper table manners. He repeats what you say-often in threes, and sometimes cannot express himself appropriately and becomes very agitated. The mood swings have been tempered by medication and are a lot more tolerable. His sleep habits have improved somewhat. He seems to have little if any empathy or patience. Everything he needs is URGENT and NOW. He is either amazingly loving and grateful for the things I do for him or acts like I am the cause of everything not right with his life. He is upset about moving and not being able to drive anymore. His self perception is way off. He refuses mobility aids, but is gradually tempering his activity after each subsequent fall. He reminds me of a child with ADHD. Maybe because the prefrontal cortex is affected? I am so sorry I have written much more than I intended too. I don't know what is early middle or the end at this stage in the progression of this disease.
Good luck in trying to make sense of it all!
I echo others on this site in saying I appreciate all of your input and observations. Thank you! Best JG
Hello goldcap (JG)
Thank you for the details of your husband's symptoms. The final predominant PSP diagnosis seems most appropriate in light of the clinical symptoms of the falls, vertical gaze palsy and the Hummingbird sign on the MRI, along with lack of response to dopamine. While I do not want to be insensitive or morbid, neurololgy researchers would find an autopsy brain examination useful. It would exclude (or include) other conditions that show some of the symptoms (they would check for CBD and Pick's disease pathology - both having the damaged protein tau tangles, like PSP. They may even look for Lewy bodies associated with another protein found in idiopathic Parkinson's - called alpha synuclein. They may also look for behavioural variant FrontoTemporal Dementia, that is linked to Pick's disease. Hovever, some of these conditions can be seen on MRI, and would have been reported on your husband's MRI. From the symptoms it was reasonable to exclude MSA that has strong autonomic nervous system damage).
I would like to see your husband's symptoms and diagnosis written up as a "teaching" Case Study in a Neurlogical Journal.
As to what stage your husband has reached, it cannot be clearly identified. The disease can have a variety of symptoms at different severities at different times. What some term 'end stage" can last weeks, months and sometimes a couple of years.
On a personal note, my wife has many of those symptoms you describe, except her behaviour is not as aggressive (she still does not initiate conversations, and this looks like apathy. Sadly, her voice becomes so weak it is hard to understand her, even when she remembers the right words). Fatigue is one of the greatest problems.
Strelley, I've said it before and I'll say it again, thanks for sharing your considerable knowledge with us. Especially in light of your own wife's illness and all the work that entails, it's very good of you to take such good care of the rest of us as well. I wish I could do something for you in return. All best wishes to you and your wife, Easterncedar
Thank you Eastercedar for your kind words. I am happy to help when (and if) I can, because "we are all on this journey together". I have received so much encouragement myself from so many carers and sufferers on this site, including yourself.
I just stopped writing this post to help my wife as she has just choked on her evening drink! I think the kudos should go to her and all our brave sufferers who have to experience the many awful symptoms of this disease.
You're right there, Strelley. Kudos to them. I have seen so much bravery and stoicism and amazing humor among the sufferers who write here - and in my own sweetheart.
Hi Strelley my first symptoms were related to balance (got wheels from OT friend) dysphagia choking ( unfortunately with wine especially red) probably aggression.
I stopped driving last year even though I passed my second test - there were marks on our car that my husband had fixed overall I thought it best not to drive & now use Volunteer task Force for taxi thru HACC - cheap fares! But got taxi vouchers now too. I am trying to get HACC to set up personal care as I am able to shower but frightened of falling in shower. Mary
Thanks for this post. Have you seen an Aged Care Assessment Team (ACAT) ? It is best to talk to your own doctor first to see if you need to be referred to an ACAT. The ACAT is usually based at a hospital or community centre and may include a doctor, nurse, social worker, physiotherapist or occupational therapist.
Once you have made an appointment, a member of your local ACAT team will visit you in your home to make an assessment of your needs. The ACAT will talk with you about what services you may need and what is available in your area.
They will discuss the result of their assessment with you, and arrange referrals to home care services.
MY FIRST SYMPTOM WOULD HAVE TO BE MY EYES , I COULD NOT SEE CORRECTLY. I WOULD GIVE A SALUTE OR SO I HAVE BEEN TOLD TO HELP MYSELF SEE . WORKING IN A FACTORY IT HELPED ME SEE LONG DISTANCES . THE FINAL STRAW FOR ME WAS MY PERSONALITY CHANGED OR SO THEY TOLD ME . GOOD QUESTION . DURING ALL THIS WAS SEVERAL FALLS A LADDER, STAIRS, AND A SMALL HILLSIDE . THIS WAS JUST THE BEGINNING.
First symptoms were memory glitches. Personality changes, (aggression) over a couple of years, then seizures and falls backwards much later. The doctors wouldn't believe me for-ever-so-long. My husband's father died of PSP and they said "IT isn't hereditary" which obviously it can be.. The vision depth problems in going down a stairway also began early.
My wife is a kind of special case since the evolution of the disease that she experiences is very slow: first symptoms more than 10 years ago and she can still walk by herself to-day even if she experiences at least one fall a day, often more than that. (She will do her daily treadmill training in a moment under my strict supervision but she can do it most of the time without falling)
The first symptom was clearly her handwritting that got very small. This is what triggered our first visit to the most well-known french neurologist in Paris. His conclusion: I do not know what this is but it is not Parkinson.(I still appreciate to-day his honesty and humility -rare among the top experts in all disciplnes!- as later many others affirm it was Parkinson when it became clear later that it was not for sure Parkinson!) It is only after a few more years and the apparition of more symptoms that she was diagnosed as PSP. A very slow evolving PSP. Over time she really develops most of the PSP symptoms: mostly all the muscle controls of the top of the body (Vision, elocution, deglutition, speech etc...) and serious balance problems. Some minor changes of personnality (hard-headed, denial of her condition) but no agressivity.
This survey is a very interesting initiative. Congratulations. Even if it appears that there is a wide variety of situations. PSP is definitely a difficult disease: no cause identified, a wide variety of symptoms, no cure, no explanation.
I was diagnosed as having PSP instead of PD in October 2015, by which time my 'fear of losing balance/falling' had become a real problem but I now realize that the first symptom had been a marked deterioration in handwriting which began in 2011 when the writing looked a little uncertain, but by 2013 had become smaller and now I cannot write legibly at all. I had no idea that this had anything to do with neurology and spent a lot of money on new spectacles which only seemed to 'work' for a short time. I have had some very nasty falls but have only fallen backwards once. These falls tend to occur in ones or twos with months in between when I don't fall at all. However the extreme stiffness in the back and legs mans that i have to concentrate solely on walking and actually telling myself how to do it. I have a mobility scooter which can go in the boot of the car and nowadays use it rather than trying to pretend that I can walk without freezing.
My husband Ben had depression with agitation then came the balance was off he fell many times then the swallowing issues came I had to thicken his drinks for about 2 years had many infections with ITU was given a cather bowel problems started then he became bed bound as I took care of him at home for 5 year then he ended up in Nursing home 10 months he passed away Jan 2017 his diagnoise PSP was in Oct 2016 the other 5 years they would say he had dementia and Parkinson he lived with PSP 6 years until death and that is the average time frame of this horrible disease Ben didn't go into advance stages of PSP thank the Lord Bens wife Carol
Hi, I am the mom of a son who died May 4, 2017. He was just barely 55 years old. He lived in Los Angeles, as I do.
His first symptoms (two) appeared March 2014. I called him after an R&B concert (among his many talents was being a professional bass player) that he had expressed some concern over. He answered with slurred speech. He never drank or did drugs as his father was an alcoholic. I commented on the speech. He replied YES he had noted it and in addition had woken up with DOUBLE VISION. I asked what he meant. He said he was seeing everything with two images.
My son had Kaiser health insurance. His first appointment was with Ophthalmology. The rest of that year Kaiser put him through every test imaginable and referrals to many different depts. The third symptom was ANXIETY. The first DX of his condition was anxiety by a psychiatrist and he was put on Prozac. His fourth symptom was continued loss of weight.
January, 2015, by a Neuro, he was DX with Parkinson's. His fourth symptom was a painful STIFF neck that he could not turn. He always needed a chair with a high back to accommodate the painful neck. My son rejected the DX, was refused by Kaiser a referral to UCLA, and paid out of pocket. The Neuro at UCLA stated he could not DX PD. There were symptoms that caused him to question PD. Kaiser followed up with a Datscan. It came out positive. In addition, 2015, swallowing problems appeared. Through it all, his eyes kept getting worst....even with powerful prism glasses. No falls had appeared. BTW, my son from at least 2002 had always done a 5 day a week 2-3 mile walk.
His day job was as a math teacher, LAUSD. January 2016 he was put on Disability Retirement. He was having balance alarms but no falls. Not having to work helped considerably, and he seemed to stabilize, but his current neuro was questioning the PD DX. He was given a referral to a specialist on PD Plus at Sunset Kaiser. November, 2016, he was DX with his first bout of aspiration pneumonia. Prior to Nov 2016, he was doing his 5 day a week walk by himself. Doing LUMOSITY on the computer daily. The pneumonia was a major setback to his condition.
January 4, 2017 , he was DX with PSP. At that time my son was walking with a cane out of the house as he was unsure of his balance. He had bounced back from his pneumonia, but I was becoming very concerned so i hired a caretaker to be with him during the day and I would come by and put him to bed, and in the morning to get him out of bed. He continued to decline, drooling, choking, speech becoming difficult to understand.
February 2017 I hired a 24 hour care caretaker. My son rapidly declined. He was unable to go for walks but he would do 15 minutes day on a stationary bike. Constipation became part of the picture. My son needed help with everything....getting dressed, getting up from a sitting position, someone walked beside him as he walked with the walker. Great care was taken with him and he did NOT fall. Alone, I'm sure he would have.
March 23, 2017, he was hospitalized with his 2nd bout of aspiration pneumonia. For 7 days he was put on an IV, no food. I came by each day and got him up to walk with a walker around the hospital halls. I walked close, next to him. He could not pass the hospital swallowing test and so a PEG was installed. He was close to 123 pounds from 170 pounds (5'10") in 2014. He was sent home. He was sent home and put on Hospice. It was all downhill after the PEG. He did for a few weeks ride the bike. His vision was near blindness. He was incontinent in the night. He had his first convulsion seizure on April 28th.
On May 1, 2017, he declined being fed (PEG). I did not discourage his decision. On May 2, 2017, Kaiser withdrew water for him. He died on May 4, 2017. This precious son of mine. He had a BA in music from UCLA, a law degree from CAL Berkeley, having passed the California Bar and the CPA. He had a full Calif Secondary math credential. His speech and his sight was gone, but he still managed to communicate with hand gestures. He was mostly cognitively intact.
My mother started having double vision in the fall of 2015 and that symptom was really the only one through all of 2016. Then about a year ago (2/17) she started slurring her speech and about a month later, her voice became gravely. The choking didn't start until May 2017 and she still hasn't fallen (knock on wood). She still lives alone at the age of 81 and walks her dog four times a day. She just started using a cane this past week due to being a little wobbly. Her voice has become so soft, slurred and gravely that it is almost impossible to understand what she is saying over the phone. We are enrolled in a clinical drug trial at the Mayo clinic and she will get her first dose (hopefully anyways...2/3 of the patients will get the drug, 1/3 will get a placebo) on 1/23. I am sooo hopeful that it will slow or stop the progression of this disease, but time will tell. If it doesn't, she will most likely be moving in with us (husband and I) before summer. I will keep you posted on the drug trial. They are taking only 180 patients in the whole country (USA) so I feel so lucky to be part of it.
The first symptoms were balance related and falling then incontinence which progressively weakened. Followed by short term memory problems, lethargy and loss of interest in former hobbies. Walking is now very slow and needs a walking aid. Externally a wheel chair is necessary
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The PSP Chronicles
The roller coaster of PSP
Our battle with PSP
Refusal to acknowledge PSP
