PSP Association
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How Long from First Symptoms to PSP or CBD Diagnosis?

Hi All: I'm curious to see people's experience of the time between symptom onset and the "real" diagnosis of PSP or CBD. I know many of us have shared our story in different strings, but thought having this information in brief numbers in one string would be useful for new members researching. E.g. for my husband it is:

CBD: 3 yrs (2 yrs to "PSP or CBD", 3 yrs to "CBD")

Thanks,

Anne G.

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It was 6 to 7 years looking back that we saw initial symptoms when we received the CBD diagnosis, however at the time we thought them to be minor aging difficulties. My wife passed away 9 months after receiving the diagnosis.

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We win! 4 days from the first symptom to a neurologist saying she thought it was CBD.

Looking backwards, for 1.5 years he was having RBD (acting out dreams with movements) and a shuffling step, and increased fatigue. Loss of smell--years and years.

We're still in the first 6 months since initial diagnosis.

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Holy cow - that IS fast!! Thx Lost and Bobby.

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Ian was diagnosed with secondary Parkinson's just over 4 years ago (kicked off by 3 years of Idaptan given to him for acute tinnitus we were told). He was diagnosed with PSP-P 2 months ago. Still a little confused as to origins.

Julietx

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..hi Juliet; origins of the disease? Tell me about it! I read a facebook group which is always trying to find commonalities between patients....there just isnt anything clear..people query plants, diet, diesel fuel, fiberglass, microwaves, agent orange,...........😟

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Hi, Julietx. What were the symptoms that clearly were attributed to PSP-P (differential diagnostic). Thanks for the info. Elena

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I think, when our original neurologist retired, the new one had suspicions immediately because of Ian's gait. He had a Spect scan and it was confirmed. There was not much conversation with him to be honest as we were using a translator, living in Spain, and so the bare minimum was discussed. We don't see him for another 9 months!

Juliet

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i have problems with my nerologist . he only saw 1 and no more h he send me cardilopa but I stop because i read that don't do nothing . I am taking turmeric , cur-cumin 1,500, omega 3 , vitaminD3 , i know that don't do to much but I try, next is coconut oil , and cannabis oil . i try anything no money but I try everything i know my walk is bad but i try . I already talk to my husband , he is an ANGEL , we has been married for 47 years , i told him what i need a living will and he said OK , i was surprised he said ok , i am giving away somethings to my children , i am doing that so they don't know why.

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3 years of false diagnosis including mini strokes 'not Parkinson's'. Old age. Dementia test taken multiple times (she always got 29 out of 30)in the end her GP referred us to a neurologist who specialises in rarer neuro conditions. After a one and a half hour examination she told us it was CBD and advised us to ring PSPA

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Boy, the difference seeing a tertiary Neuro, eh?

AGxx

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Yes! and she asked us to go to the neuro centre so that trainee and junior neurologists could see the symptoms but my wife got a UTI and spent the next six weeks in hospital.

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I noticed my first symptom of what was eventually diagnosed as CBD in August 2014 although I ignored it for 12 months. I saw the consultant in June 2015 and after several scans he told me that something rare was showing and we would have to 'watch and wait'. Finally in October 17 he gave me his diagnosis. I think he suspected almost from the beginning. Xx

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Thank you Jennette :-)

AGxx

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2 years of symptoms before going to the GP in May 2010. Diagnosed with PSP in September 2010 after scans etc and told he had 5-7 years left. Died October 2016, 6 years after diagnosis.

XxxX

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Thx B, I'm going to do an informal summary at the end of the string. Boy, your Doc was bang on...

Xx

AG

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I await your summary with interest. Our surgery had never seen anyone with PSP but C took my list of 25 changes/ symptoms that I had noticed to our GP and by what I had listed he thought it was neurological so set wheels in motion. After tests, scans etc we went to the neurologist at the hospital and he had my list in C’s file.

XxxX

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It's interesting how many of you in the UK say that the scans led to definite diagnosis. I asked our neurologist if anything showed in the scans, and he not only said no, he also said he rarely sees definitive signs in the scans!

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The first scan at our local hospital showed no abnormalities so he was sent to Kings in London where they have different scanners that show more. Brain scans of those with PSP appear to have a hummingbird pattern of deterioration. The neurologist said my husband appeared to have PSP and he presumed that is what it was but definite diagnosis was not possible until post-mortem. C donated his brain for research and I had confirmation by post a few months later. Non of the professionals wrote down that he had PSP. They wrote things like possibly, probably, shows signs of PSP but when speaking they always spoke as if it was a definitive diagnosis.

XxxX

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Hi Anne, 3 years after the first symptoms x

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Thx amanda xx :-)

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Hi Anne

Great idea!

The time scales in the U.K. have dropped enormously over the last few years. Thanks in part to the work of the PSP Assoc. and their awareness building work.

For us it was a misdiagnosis of labarynthitis (falls) for two years followed by the PSP diagnosis. We got lucky we lived in London at that time and so tertiary neurology meant seeing someone in a good teaching hospital. So we got a good diagnosis quickly at that point. e.g. plenty of complex tests on all of the different aspects making a clear picture.

Pre PSP Assoc. I understand it would more likely be five years to diagnosis.

Best

Kevin

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Thx Kevin :-)AGxx

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Kevin has mentioned that it can help to reach a proper diagnosis quickly by seeing a senior neurologist....... this can save 2 or 3 years .

I had symptoms about 6 months before .

Cheers,

Patrick.

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Bob was diagnosed with Parkinson’s about seven years ago. Eye problems started about two or three years ago. PSP was the diagnosis this January 2018.

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DeDe, do you think the PD dx was wrong in the beginning? In other words, do you think Bob is now 7 years "in" to PSP?

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Anne, I’ve been curious about that myself. I really think that it has always been PSP; and I guess I can only surmise that PSP’s earliest symptoms include stiffness and awkward gait. I never felt that the carbidopa/ levodopa had a consistent effect on Bob. He kept increasing his dosage and when I mentioned that to the neurologist, he said “if he needs it, he needs it”. Even a trip to Mayo initially confirmed PD with the comment “everyone is different”. Like others have said, looking back after the PSP dx, there were symptoms that should/could have been picked up on. A second visit to Mayo a year later confirmed PSP, with the recommendation that the cabidopa/levodopa could have positive effects because of the PSP-P dx (vs the PSP-R dx). I still see no difference but Bob keeps taking it ... I think he’s just afraid not to.

I guess I see it as a fork in the road ... Parkinson’s and PSP walking along and then symptoms unique to PSP show up and off he goes! 😉

xoDorie

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so true...!

Hugs xx

A.G.

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Anne, my husband was officially diagnosed on June 2018 and I noticed his first symptoms at the end of 2013. I would say 4 years.

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...again 2013! See how often that year shows up...

AG xx

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dear raincity, I dont think 2013 has any statistical relevance. Sorry. Nevertheless, your suggestion was very clever

Hugs.

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Love you scientists ;-)

XX

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Probably because those diagnosed earlier have died and no longer read the site !

xx

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Hi Anne my mum was diagnosed with glaucoma at the end of 2013 and things went downhill from there. 2014 she became overly anxious about things her writing became small and she was getting her words mixed up especially no and yes she kept falling and found walking difficult. Towards the end of the year she went to her GP and he diagnosed her with phlebitis and gave her fenbid gel to apply to her legs. I remember bumping into her in town I had seen her in the distance and she was shuffling along slowly I put this down to her sight. Her personality changed and she had no filter and would come out with really shocking comments. I'm not easily shocked but this wasn't my sweet mum. 2015 I took her to see her GP and he said he would refer her to the falls clinic I think he suspected dementia and clumsiness due to her sight. The appointment never came in time . Mum continued having minor falls and then early 2016 the fall of all falls right down the stairs she fractured her pelvis after a 5 week stay in hospital she finally saw a consultant at the Parkinsons clinic this appointment took another 6 months. She was finally diagnosed with suspected CBD February 2017 after having the usual scans.

At last we knew what we were dealing and had a name for it. So I would definitely say 3 years before diagnosis.

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Thinking back the first indication Larry has something was his dropping food on himself at meals when sitting at the table. That may have been ten years ago. His first major fall of which I was aware was in 2011. He told me later he had been falling for some time. By 2103 his relatives told us his speech was slurred. I hadn’t noticed it as we tend to mumble at each other. The slurred speech had his aunt who was a nurse recommend he see a neurologist. A year and a half of inconclusive tests followed. A new neurologist at a different teaching hospital got a Parkinsonism diagnosis then PSP in May of 2015.

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If I'm reading correctly, symptoms approx 2008 - dx PSP 2015, so 7 years...

Thx J

AG xx

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That’s my calculation.

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We had the initial diagnosis of Parkinsons in February 2014, but the symptoms had started about 2 years before that. Then PSP was confirmed in June last year after an MRI.

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So I'm reading: 2012 - 2017: 5 years. The initial PD dx always seems to make the PSP dx come much later - same story with others here.

Thx Caro

AG xx

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To add to this, after the PD diagnosis from a neurologist who specializes in memory problems, a second opinion from a movement disorder specialist confirmed PD (in 2014) when I noticed the problem Mike was having with focusing I mentioned it to the neurologist who basically shrugged his shoulders at it and offered no reason or solution. That’s when we decided to go to Stanford and got the PSP confirmation. So it’s really getting to the right specialist, one who has experience with the ‘other’ Parkinsons diseases.

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He was worried about feeling giddy years ago and had numerous problems which I now recognise as PSP but didn't link.

In 2012 I noticed various problems which I thought indicated a neurological problem. So I went with him and asked for a neurologist's apt. He saw the neurologist in Oct 2013 and was diagnosed immediately , as he had been studying PSP. He thought 5 or 6 years.

Chris died Oct. 2017

Jean xx

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So, he had symptoms 5-6 yrs before rhe 2013 dx? Almost 10 yrs with the disease then...

Thank you Jean.

AG

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I suspect that the early symptoms are so diverse and increase gradually that its only when we look back they make sense.

Chris was never " parkinson ". He had giddiness, occasional falls, and some confusion and spacial awareness issues. He also changed in his personality - became more self-centred and uncertain.

Easy to just see it as ageing.

Jean xx

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And that is exavtly what happened with hubby and me all thru 2013 and into 2014.... Oh well - at least we fought less after I understood the involuntary nature of the self-centredness and apathy! ;-)

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Yes. I regret that I was not so "nice" to him before I realised it was PSP - that he couldn't help it and he felt as bad as I did. He would say " I don't know why ". It must have felt dreadful for him to lose his prodigious energy and competence.

xx

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In 2008 he was let go from his job because he was operating his machine to slow and we just put it down to a personality conflict

2009 started to see that something was going on,balance was off,simple thing like throwing a ball for the dog he would freeze.after seeing every kind of doctor and three neurologist.

2013 after two years of being on meds for Parkinson ,which did nothing for him, he was finally diagnosed with psp.

From first signs of PSP to diagnosis 5 years.

At minimum he is in his 10th year of PSP

Deew

Dw123456

( for some reason 2 have two profiles )

Dee in BC

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Thanks Dee - I remember you posted a string a few months back asking essentially the same thing (only you also asked about stage as well). It was a good string and I thought this one could complement it.

...10 years... As always with psp&cbd you cant wish for freedom because of what that means...

Hugsxx

AG

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Hi Anne

In hindsight prob about 5 years before diagnosis of PSP (2013) my husband had significant personality changes. In 2012 I was convinced his gait was off and he smashed several wing mirrors off the car. I went to see GP worried and he suggested I was depressed!! He then had a consultation with my husband and said I was worried about him and asked my husband if he was worried about me as he seemed fine!!! That was really unhelpful and unleashed huge anger, frustration and paranoia in my husband. We saw a private neurologist in Jan 2013 who within 20 mins said he had a Parkinson’s plus syndrome or Dementia of Lewy body or both. Following investigations he was diagnosed with PSP in November 2013. GP was very surprised though to his credit said he had never heard of PSP and as my husband had never had the shakes he had never considered anything Parkinson’s related.

I think he was diagnosed very swiftly once we saw a neurologist.

Love Tippy

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Thanks Tippy - there's a bunch of us who first noticed symptoms around 2012-2013. What the hack was going on that year?!!

Cx

AG

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I think at least 2-3 years before he was diagnosed, he had dizzy spells, started using a walking stick, saying his ankle him, very aggressive, coughing some back ward falls, doctor we had at the time said it was a side effect from the tablets, I remember going to the doctors with George and the doctor saying doesn’t he look better, I remember saying no I don’t think he does, she just ignored me. Diagnosed in Cyprus while we were on holiday, I thought he had a mini stroke, but doctor said no it’s psp, go back to England and go to queens square, which we did so re diagnosed in January 13 2015, doctor said he had between 4-5 years. Yvonne xxxx

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Thx Yvonne :-)

AG xx

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Carol was diagnosed in August 2015 and died December 2016.

Prior to diagnosis she had been under neurologist for 1 year, undergoing various tests and slowly ruling out commoner conditions.

It took 5 years of tests and ineffective treatment at the opthalmic hospital before refferal to neurologist. Measured timescale starts mid 2009 but symptoms of infrequent falling and swallowing problems had been present for about 3 years beforehand.

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So possible first symptoms 2006 and dx 2015? I think you're the longest so far Tokki: 9 years.

XX

AG

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Hi, I first noticed symptoms in December 2013 - left foot aching and cramp like toe spasms . Doctor referred me to neuro in January 2014 and after initial thought of MND, my neuro confirmed diagnosis of Parkinson's Plus - CBD IN October 2014. I am part of a research programme and have been told that my condition along with the meds has not altered in the last year. I have also been told that it appears I am "very mild" for which I am truly thankful. Julie

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I'm grateful for you too Julie :-) Thx

AG

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I think changes happen quite slowly but when I look back he could not stay on a bike in 2012 in Burma and we just thought it was the state of the bike. He used to complain about his balance and he was seen by a neurologist in 2014 that said it was just his age. We saw the same man in 2015 and within five minutes said he had PSP and told us there was no cure or no medication and referred us to Professor Rowe in Cambridge. Pauline x

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Thx Pauline - that 2nd visit must have been one h__l of a shock!

xx

AG

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Hiraincitygirl!

My wife has been diagnosed with PSP-RS. The first specific symptoms showed up in March 2012: difficulty with speaking as if she had a stone in her mouth and a slight tremor in the ring finger. The definitive diagnosis was done in June 2015 (after troubles in eye movements were detected, which was the specific symptom that - added to the difficulty in speech and walking instability - guided towards the PSP-RS diagnosis). DATscan between 2012 and 2015 did not confirm the suspicions about Parkinson's, PSP-RS, PSP-P, PSP-CBD, etc.

From 2008 until the first specific symptoms of PSP in 2012 she showed some instability and suffered two serious falls that nobody related to PSP but, perhaps, were the first two symptoms that nobody could identify

Have a good and not rain day.

Hug. Luis

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I know what you mean about "when exactly did IT start" - I had the same quandary with my husband ; not sure which events were really early symptoms, and which were just anomalies.... I'll put you down as 3 yrs to dx.

thx Luis :-)

AG

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Symptoms to the point where couldn't ignore any longer 2011. Diagnosed 2014 CBD. Looking back could see there was issues a few years prior to 2011.

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Yes - me too. (See my reply one up to Luis....) Thx Beau

AG

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Hello there

We got our diagnosis on the first visit to the Neurologist. Chris first saw the Doctor in November, fortunately he had some experience of the disease as coincidentally an ex colleague of my husband's lived in the same town and was suffering from PSP. We were referred to the Memory side of the NHS and then to Neurology. So in total six months or so.

Our GP who was determined to get Chris sorted and who was very supportive has since retired.

Hope this helps.

AnneandChris

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Thx yes - you're one of the very few "under one year" ones!

XX

AG

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Hello again

I think it was only so quick because of the vigilance of our GP. Initially I wondered if it was early onset Alzheimer's but then the Neurologist asked me if I had any thoughts and I queried neurological degeneration which he then confirmed and said it was PSP. The degeneration has been quite marked since the end of March. I'd just finished clearing my Mother's flat after she died in February when Chris went downhill. It's an absolute b***** isn't it.

Keep on keeping on

Anne

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Yes it is Anne..yes it is. Extra hug for both of you. XX

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My Dad mentioned to me that he was worried about Mum a couple of years before he died, so that must have been around 2010. At that time she was falling into flower beds whilst gardening which we put down to general old age but think he also saw other changes. Falls & mobility started becoming an issue in 2012 and in the latter half of 2013 there was a rapid decline in mobility & confidence, Mum got a referral to a Neurologist during this time, they arranged an MRI scan, results in early 2014 were inconclusive but with the falls and problems with eye movement the diagnosis was given as PSP. Hearing other people's stories think we were very lucky as we got the PSP diagnosis straight away.

Mum is still going today but with lots of eye problems, which really frustrate her, very poor mobility, plenty of coughing/choking episodes and quiet, sometimes indistinct voice but she is still very definitely my Mum and we can still have a giggle, though she does have her down times obviously, who wouldn't.

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I'm glad you still have her AJK :-) I'll say it was 2010 - 2014 for dx then? 4 years.

Thx! AG

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I'd say so, with Mum it was getting the GP to her take problems seriously and refer her to a Neurologist that was the delay.

Interestingly whilst Mum was down South we never came across anyone else who had heard of anyone with PSP - GP, Parkinson's nurse etc. Since moving Mum to Cheshire, her GP practice had previously had a patient with it, one of her Carers has a client with it and the Community Matron also has another patient, the nursing home Mum was in recovering from a fall had a lady with it, so 4 other people - suggests perhaps it's being recognised better now than before.

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Hi raincitygirl, I am sure that if we all thought back and tried to remember the subtle things going on with our loved ones, we would trace the start of these diseases back to many years, making it extremely difficult to ever get a diagnosis early on to be offered the chance of a place on any drug trials. Thinking back I am now able to go back to 2001 when sitting on a beach on holiday my husband gave up trying to read his book as he said the words were just 'wiggling' on the page. This symptom was intermittent and optician tests showed nothing wrong. It wasn't until 2010 when the double vision kicked in that he had further tests at eye hospital but still PSP wasn't picked up - they put it down to a muscle problem and he was given prism lenses to correct it. A brain scan at that time showed nothing either. There were other things as well, fatigue, personality changes, and one thing I realise now is that my husband always had the most infectious laugh and saw the funny side of most things, looking back that laugh stopped many years before diagnosis, I just didn't pick up on it. What I am saying is I suspect most people's symptoms have been there for years, just too subtle to cause any real concern and this is why I think the generic list of symptoms for say, PSP, needs a big overhaul, taking into account others experiences. Of course, it doesn't mean to say that any particular symptom will point to PSP or the like, just that it might lead to a much earlier diagnosis if the experts in the field had more pieces to fit the jigsaw. The majority on this site I suspect started with different symptoms, and for much longer than anyone realised. That's certainly our case. Best wishes, HilsandR

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I really think you hit it spot on. It’s so hard to know if subtle symptoms from a decade or so prior are

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Coincidences or symptoms. Looking back my dad had random choking issues a good 10 years before diagnosis. Coincidence or symptoms.

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One thing I forgot to mention is that in 2001 we purchased a super king bed as I had suffered my husband acting out his dreams for at least 10 years prior, he slept through it, I was constantly disturbed. Along with the myriad of other symptoms with PSP, he still acts out his dreams so I am now in the spare room. I read some time ago that acting out dreams can, in some cases, be a precursor to neurological illness, taking many years before the illness shows. There is still so much about these illnesseses that can fool even the experts, and as you say, coincidence or symptoms? I suppose the reality is currently that until a disease modifying drug comes along, catching things early isn't going to make any difference to progression.HilsandR

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I agree with you Hils: and 'when is a symptom a Symptom??' very hard to say.

For the purpose of my information survey should I use 2010 as the "start"? or 2001? Your choice! Also when was he diagnosed, if I may ask?

thanks :-)

Anne G.

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Hi Anne, I suspect 2001 was most definitely a symptom as R's eye problems could not be diagnosed, not even when the double vision became a big problem in 2011. So 2011 was when his most worrying symptoms set the alarm bells ringing and he saw the GP on several occasions, but we failed to get a diagnosis until 2015 as up until then was told there was nothing wrong with him!! More interestingly, I read an article that 80% of people with REM sleep behaviour go on to develop a brain disorder, which can appear decades after the sleep behaviour started. Having suffered years of R thrashing around in bed we bought a superking bed in 2001 as most nights I felt I had done a few rounds with Mike Tyson! Of course, R could have been in the 20% unaffected but the more I think back the more pieces of the jigsaw I fit together. Hope this helps, though I have rambled on again. HilsandR

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Not rambling! What you suggest is very interesting - at the very least it may some day lead to earlier dx and treatment...when that's invented..!

Hugs xx

AG

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I agree with HilsandR in that when I look back there were many subtle symptoms present for a few years. Acting out nightmares, loss of sense of smell, spatial awareness issues, (lawn bowling performance dropped off significantly), driving was starting to concern me, balance a bit impaired. In early 2016 my GP concluded that the symptoms were consistent with general aging. Rob was 75. Not happy , I sought out another GP later in 2016, who arranged scans. Conclusion was brain lesions present warranting further investigation. In September 2016 Rob had a horrific backwards fall down a brick staircase. I thought he was dead, unconscious in a pool of blood from the back of his head. He was in hospital for weeks during which a neurologist diagnosed PSP. He entered full time care a few weeks back as I couldn't manage the difficult night time behaviours (eg getting up between 10 and 20 times nightly) and couldn't manage to get him up from his frequent falls. I now spend about half the daylight hours with him, trying to make his life a little more pleasant. Sorry this is a bit of a ramble. Hope it is useful. Rob has many other symptoms but is still physically strong. I think and hope he'll be around for some time yet.

Blessings to you all. Lynne

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Yes Lynne, many are responding about the early signs that we didn't know were signs..just thought were "aging" etc....

I'm glad your man is still present for you. What a huge huge difference, even if in a care home, even if he got so he never spoke - he's still alive and "yours" - hold on to that!

Love,

A.G.

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2 years with symptoms and a few other "probable " diagnosis, neurologist said maybe Parkinson's plus, just not sure which one . Continued testing and ruling things out, the DATSCAN and MRI helped Movement Specialist neurologist give definite diagnose PSP in Jan 2018, 6 years after the first symptoms we noticed.

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thx Khartt xx

AG

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I think P`s symptoms started at least 10 years ago but was only diagnosed in 2014. He died 6 weeks ago, so 4 years after diagnosis.

xx

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Thx B, I understand where you are now. I just haven't done the post yet....

Hugs xxxx

AG

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First diagnosed with Parkinson's in 2014, ( I suspect s fall in 2013 was the beginning) Dec 2015 provisional diagnosis with CBD confirmed in early 2016

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10 years from PD to PSP, 1 year from PSP to PSP-P. Hugs

Elena

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Hi Elena! :-) Hope your sister is doing ok

Hugs xxx

A.G.

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CBD - 11 years (8 years to atypical Parkindons, changed to CBD 3 years later)

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You may be the 'winner' of this little survey Etta! 11 years....!

xx AG

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My husband started searching for balance problems in 2008, probable PSP in 2010, PSP confirmed in 2012. He now is blind, unable to talk, in wheelchair, swallowing problems in his 10th year. So 4 years to confirmed PSP

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Your poor darling husband! :-( How sad....No one should ever have their life end that way. Please give him an extra hug for me XXX

A.G.

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First noticed a change in my dad's speech and stride in 2011 after he returned from a 3 month holiday with my sister. He was diagnosed with Parkinson's in February 2015 and in April 2018 the neurologist diagnosed it as PSP.

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Yes Missy, the ones who are first dx with PD are always a longer time before the refined dx - I'm seeing anywhere from 6-11 years (!)

xx A.G.

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Husband was tentatively diagnosed as PDP at first neurology visit 4/2015. Tried Sinemet in increasing doses for 4 mos with no effect. Although he is up in a chair for part of the day, I'd call him bedridden now 3 yrs following diagnosis.

If I look back at first symptoms, I'd say they probably started at least 4 yrs before that. He attributed everything, shuffling, falls, eye problems, etc. to getting old. Refused medical care until 12/2014 following a serious fall that finally scared him into seeing a Dr.

Pat

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Thank you Pat. Give your husband an extra hug today from me :-)

xx AG

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PSP diagnosis came 2.5 years after being told “more than likely a stroke.” After learning the symptoms we believe dad had symptoms a good year before the “stroke” diagnosis. We are now 6 months post PSP diagnosis and believe symptoms started roughly 4 years ago.

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Thank you T, xx

AG

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PSP: 11 years. Earliest symptoms coincided with a serious fall from a ladder where a concussion among other serious injuries was sustained. Some of those early symptoms were attributed to the TBI. Perhaps the fall was a result of those early PSP symptoms. C. was initially diagnosed with PD until he was seen by a PD expert neurologist who disagreed. For the longest time, I was frustrated by the inconclusive diagnosis of Parkinsonism. I remember years ago while expressing my frustration at a caregiver's support group, another member suggested that I should be happy he didn't have PSP (like his wife). How ironic that C would ultimately be diagnosed with PSP and that was only because upon seeking a place in a PD study, he was disqualified by the doctor doing the study who concluded he had PSP and not the specific form of PD (postural instability gait disorder).

What a journey this has been. Like this page, I have learned so much and gotten so much support from a caregiver's group I attend regularly.

My husband worked hard for years to fight this disease. He exercised and relentlessly pursued efforts to fight symptoms. But, as we all know, the decline is inevitable.

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Thank you Hubetsy; It is indeed a random (for now) and very cruel disease. None of our loved ones did anything to deserve it. My heart just breaks for them all.

Hugs to you xxx

A.G.

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CBD - 4 years (Ruth started slightly slurring words July 2012, diagnosed Dec 2016)

Richard x

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Thanks Richard. Hugs to you and Ruth.

xxx A.G.

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My mum has been newly diagnosed with PSP. It has taken 4 years of different specialty consultant appointments, a change of GP, NPH diagnosis and a shunt fitted........finally we now know what the problem is.

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Seems so long...yet pretty close to the average wait time! Still, it's better to know - at least you know what you're fighting.

Courage XX Anne G.

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Anne,

We don't have good data on CBD (as the diagnostic accuracy for CBD is so poor).

According to the best study done of autopsy-confirmed PSP, the average delay between symptom onset and clinical diagnosis is 3.5 years (plus/minus 2.6 years). If you have Richardson's syndrome, also called "classic PSP," the delay to diagnosis is shorter. If you have PSP-parkinsonism, the delay to diagnosis is longer.

Of course the "real" diagnosis is only possible post-mortem.

Robin

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Thanks Robin: remarkably consistent with my unscientific survey :-)

A.G.

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Yes, I just stumbled across your unscientific survey. Good work!

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Hello. 5 years from onset to diagnosis; 7 years since diagnosis. I wish that there were some epidemiological studies that compiled data like this, to track incidence in populations, time to diagnosis, etc.

Marilyn

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