So, here’s my question. If initially diagnosed with Parkinson’s and then an MRI showed the hummingbird six years later, was it ever really Parkinson’s or was it always PSP? Does Parkinson’s develop into PSP? When folks write about the progression of PSP (e.g. “we needed a wheelchair after five years” or “he couldn’t feed himself after six years”), is it from the first onset of the Parkinson’s diagnosis?
Thanks for saying there’s no dumb questions ...
Dorie
Hi Dorie
But I can't promise not to give a dumb answer. 
You ask a very complicated question in some ways.
PSP and especially CBD can be mistaken for Parkinson's. One of the big thrusts in the PSP / CBD world has been to get better quality diagnostic testing earlier.
Tremors are, I believe, more common in CBD otherwise known as CBS. (Corticalbasal Syndrome.)
I can't find the paper I was reading a few days back, but this one might be helpful. The other paper was solely about the differences and diagnosis.
ncbi.nlm.nih.gov/pmc/articl...
My take is that if it were the same illness (and Parkinson's is not known for developing into something else) then I would say take the date from first symptoms observed.
However be wary of time scales. There are people on the forum who have suffered for 20 years. For others it is shorter, typically around eight years? The illness seems to develop in jumps or 'step downs' sometimes there are non for a while and then at other times a couple can come in quick succession.
Lastly the development of the illness is a little different in each person. Depending where the Tau protein plaque forms in each individuals brain then so too will be the losses associated with that part of the brain function.
Well, that's my amateurs take. I hope it helps a little. I can look out better papers - just ask.
Wishing you and Bob the best.
Warmly
Kevin
Thanks, Kevin, I guess I just needed a nod to my thought that it was PSP all along. Bob (thanks for recognizing me from precious posts) has never had the tremors so I always accepted his being one of those that wasn’t the “Michael J Fox type Parkinson’s”. And after three trips to well known neurology hospitals, I did finally accept that “no two people are the same”.
I love this forum and so appreciate all of the caring people here. But I must admit, when reading some of the conditions the patients are in, I find myself wondering when the next shoe will fall.
I know I must remember to take each day as it comes. Speaking of which, I was tickled to read of your great day with Liz recently!
Kindest regards,
Dorie
P.S. Thanks for the article!
Oops - this paper says five years life expectancy - I think it is an older paper - I believe eight years is more typical.
When will people ever learn to date pages on the Web!
I was told in 2011 that life expectancy was 5 years from diagnosis, rather than from symptom onset, and thereafter that improved diagnoses were raising that to 7. I was hopeful that we would have longer, as my sweetheart was diagnosed fairly quickly, but we had just over 6 years.
Right! The first thing I read said a mean of 5 yrs too, but it was an older site.. Then Neuro said (this past summer) "6-8". As Kevin says we're seeing (some report) 10 yrs more often now. Maybe we're getting diagnosed earlier hence greater length of life from dx??
One has to pace oneself!!
😂
Yes, that's the way I have interpreted this, that it's not that treatment has improved, but that the improved awareness of the condition means it is being diagnosed earlier. Likewise, although PSP seems to be statistically less rare than before, the change is more likely to be a result of more accurate diagnoses, rather than an actual increase in the incidence of the disease.
Agreed I was told by the neuro consultant that I could have a minimum of six years from now and I was misdiagnosed with Parkinsons abt 2 yrs ago making8 yrs total
Hi Jillann!! waving at you ❣️
Dorie one of the first things I noticed when I came on this site was the number of people with a very rare disease. Now perhaps it's me but if it's rare then you don't have people constantly joining? The other thing I noticed was the numbers of people who had been diagnosed with PD but then been re-diagnosed as having PSP.
I have just read something which is basically saying people who have an MRI are far more likely to get a correct diagnosis. People talk about the hummingbird sign being present. In the paper I just read they also mentioned a Penguin sign! I have never heard of this before. I think PSP is very much moving up the list in terms of Neurologists looking at it.
However to answer your question can PD turn into PSP. I have no idea but it seems unlikely. However again the paper said there can be links to other conditions including PD. This is why Neurologist get confused I suppose and they are used to PD?
Doesn't really answer your question I am afraid but I would be confident that if an MRI has been done and they now say PSP then it is highly likely that is what it is.
However it is really important to arrange donation if the brain after death as that is the only way to be sure. It is so important for all brain conditions. Some people are found not to have PSP at that point but another even more obscure condition.
Best wishes.
Marie x
Thanks, Marie! I definitely noticed the frequency of Parkinson’s to PSP diagnoses too. Originally I had heard there was no test for PSP, then heard about the hummingbird ... and now a penguin? 😉
Since just last night Bob told me he was “normal”, today would probably not be the time to talk about the brain donation. But I definitely believe that is extremely important.
Fond regards,
Dorie
The dat scan using photon emission from radioactive tracers is the definitive test
Nearly 600 people responded to a question asking where they where from on a PSP Facebook page! Yikes!
My husband was never diagnosed with PD. His first symptoms were falls and gaze palsy but no tremor. With the benefit of hindsight there were earlier signs that something was wrong going back several years but none severe enough to raise alarm. He was diagnosed with 'probable PSP' six months after first consulting our GP. From the first unmistakeable symptoms to death was about four years in my husband's case. The progression was relentless and quite fast with few, if any, plateaux. He had chosen not to have a PEG tube so, when he became unable to swallow, death followed fairly rapidly. After death (on donation of his brain) PSP was the confirmed cause of death.
My understanding is that PSP is a completely separate disease to Parkinson's but that some of the early symptoms can easily be mistaken for Parkinson's. I don't think one turns into the other.
With all good wishes
Vicki
Thanks, Vicki. My condolences on your husband and I am sorry for that rapid progression. I also send my appreciation for caregivers like you who still stay connected to help us along the way. I guess I wanted to believe that PSP could have developed from Parkinson’s so that I wouldn’t have to calculate that first six years as part of the total progression. 😞
xoDorie
Hi, my mom was never diagnosed with PD either, her first diagnose was Benson Syndrome, two weeks later the Dr confirmed PSP. Looking back she had shown a couple of the syntoms way earlier, but nothing so evident as to think it was severe, we thought it was related to late signs of menopause. Once the desease was diagnosed we have been on a non-stop roller-coaster from symptom to symptom, with almost no respite. It'll be five years into her diagnose this autumn and it's been more than a year now since she can verily speak a couple of words and isn't able to walk. We were told 7 years probably, but I think it depends on the patient. As we have all experienced with PSP there are no two people alike with this desease. Everytime we change one of my mom's medicines or she takes something new, the tremors begin... they last two to three days and leave. Her doctor said PD and PSP are cousins, so some of the symptoms could sometimes be present in both deseases.
I'm very sorry you lost your husband already. I want to thank you for donating his brain, I know I can't expect it'll help my mom, but I know it will help someone in the future to get better news than the ones we've gotten so far.
It's an interesting question, but I have never heard it suggested that one patient *couldn't* suffer from both Parkinson's and PSP. Some overlap could explain why some PSP patients respond to Parkinson's meds while most don't.
Interesting point. 👍 Yet again we see that each person is different.
My husband continues to take the carbi/levidopa. It doesn't last very long but he enjoys the time until it wears off.
Interesting. It did nothing at all for my sweetheart. How does it help your husband?
Not sure anymore🤔 I just asked him and didn't get a clear answer!?!?!😄
Was he prescribed Carbidopa/Levodopa when he was first diagnosed with PD ?
He probably was not helped by those drugs if he had PSP ?
I think doctors use this to help identify the disease initially.
Best wishes,
Patrick.
My wife was diagnosed with Parkinsons about 4 years ago. The slight tremor she had went away we think the Sinemet did that. We joined our local support group and noticed she was getting worse and that most people in the group stayed the same over the 4 years. She thought she had MSA, in December 17 she was diagnosed with PSP. We continue to go the support group and visit the Parkinsons nurse. The consultant said that we have to face problems as they arise.
Yes, that was one of the things that made us suspect PSP was the faster progression of Bob’s frequency of falls.
Yes, treat each problem as it arises ... don’t go looking for trouble ... it’ll find us!
Kindly, Dorie
In my humble option, I don't think so. Steve went to exercise classes for people with Parkingsons. While no one person was the same, Steve stuck out like a sore thumb as having something totally different.
I think it's because some of the early symptoms can be similar and most doctors haven't heard of PSP, they just get it wrong.
Lots of love
Anne
Thanks, Anne. I’m guess I knew the answer all along ... would have liked it to be different.
xoDorie
Wouldn't we all! Totally understand, we want that magic wand. Even now , I want to wake from this nightmare.
Lots of love
Anne
Hi
I agree, Rog now looking back was text book PSP, but no one clicked for a long while. He was going through the Mental Health route and it was a therapist who picked up his non engagement was probaly organic even though he exhibited so many obvious signs.
In some ways i feel spared the horror and fear that carers must endure with these violent outbursts.
Their legacy has to be if only one professional is more aware of this cruel illness earlier it may enable others to receive approprite support quicker.
Off down the lottie today, bliss!!!
Julie
Amen to awareness of the professionals!
Yes, I feel the same way about Sis. "Anything" was going to be bad, but Parkinson's was "better" (as sad as that is); than PSP. The Levidopia actually made her act very strange and she showed no improvement, but she did get a fast diagnosis because of the hummingbird. Thinking about everyone on here tonight. I don't post much, but I do read a lot of the posts and feel so blessed that I found this safe space. Hugs to all who come here. xoxo
May I ask a related question? If one has been diagnosed with PD but does in fact have PSP or CBD what is the longest you guys have heard before it becomes clear it was not PD after all?
For Bob, it was six years. But, in hindsight, I think we should have seen the PSP symptoms earlier and pursued further diagnosis. I’m curious too to hear from others on this question.
Dorie
When I took all of Larry’s tests to another neurologist who had a movement disorder background. The first neurologist was clueless.
Our first neurologist was clueless as well. We only saw him twice as he then sent us to a neuro-surgeon for possible back surgery. 🙄 We then found the movement disorder clinic but the PSP dx was still years away.
Arwenmark, your question may get more responses if you ask it as an initial post. I think some of our questions get lost when they are presented in a thread of comments. I’m curious to know too.
For us it was only a couple of months, but we were fortunate in being able to go to a University hospital and a neurologist who had been working on PSP for ten years. I do believe there are many more cases of PSP being treated for PD. The MRI is the only way to confirm the disease.
Arwenmark,my husband was dx with PD in 2009,then with PSP in 2016.,that’s 7yrs.
Hi arwenmark
Agreeing with Dorie - best to start a thread you will get more responses.
Here in the UK I have heard of up to about five years. However the PSP Assoc. really have raised awareness and I would be horrified to find a case any longer than two years now.
If you have an uncertainty check this out Red Flag for G.P's from the PASP Assoc.
This is what a clinician she keep in mind to make an early identification.
pspassociation.org.uk/for-p...
I hope this helps a little.
Best
Kevin
My son was born March, 1962. This is his experience with PD diagnosis (DX) to PSP.
His first symptoms appeared March of 2014. WE BOTH LIVE(D) IN LOS ANGELES, CALIFORNIA, USA. They were DOUBLE VISION, slurring of speech, and Anxiety + Fatigue that increased. It was a Sunday and he woke up with what I described. We do NOT share a household, but lived within 10 minutes of each other. His health insurance was Kaiser Permanente. At the time he had just turned 52.
Kaiser immediately examined him thro Opthalmology. He underwent an MRI. He was given meds for his anxiety. He was given a prescription for prism glasses (to clear the Double Vision). January of 2015 he was referred to Neurology, movement disorder specialist, who diagnosed him with ParkinsonISM and started on Sinemet.
My son did not ALWAYS seem helped by the sinemet, but at other times yes.
He did not believe he had PD and requested a referral to be evaluated by UCLA. Kaiser refused his request. My son, out of his own funds paid for a consult to UCLA. July 16, 2015 he saw Dr Farag at UCLA. He was told that he did not have run of the mill Parkinson's (PD), but they needed more time and more information.
He was told that "Parkinsonism" is a catch-all at the beginning.... until more info can lead them to a more specific neurological condition.
August, 2015 he had a Datscan, administered by Kaiser. In a letter from his neurologist, Dr. Petrovich, dated Aug 19, 2015, he states:
"The DAT scan result were abnormal and showed a parkinsonian disorder. The technology is not sufficiently advanced to us to distinguish between different types of parkinsonian disorders, commonly called parkinsonism...............Seeing how you develop in the furture and and how you respond to medications is a way to decide between those diagnosis"
Jan 4, 2017, by referral (within Kaiser) he saw Dr. Bruce Enos who gave him a DX of PSP. Even then I did not totally understand what that meant. He was drooling, choking, his neck constantly pained him (unable to move it and after one experience with Botox refused any further botox injections). My son asked how much time he had and Dr Enos told him 3-5 years. My son, with a cane, walked into that appointment and could talk coherently. From that appointment we went to a restaurant to eat. At the time my son was still living alone.
March, 2017, he got a second bout (his first was Nov, 2016) of aspiration pneumonia, 7/8 days in the hospital, and was convinced by the hospital MD to have a PEG installed. He came home five weeks before dying. He suffered a seizure, he declined more, and made a decision. Since he was not improving, and there was presented NO HOPE he requested that his PEG feedings stop. By this time, he had a bedsore, suffered from severe constipation, was blind (or near it), could not walk or sit up unattended, could not talk....communicating with his thumbs, and NOT allowed to take ANYTHING by mouth . He had little quality of life. He was presented with it only worsening.
I look back. I kept an erratic journal of his symptoms and treatments. My son saw a Physical therapist who felt my son could no longer be helped, saw an acupuncturist for 3-4 months twice a week, had a massage once a week, saw a pulmonologist, saw speech therapists, etc, etc.
You asked a question, I give you what happened to my son. I think, although the technology and sophistication regarding PSP has increased, and will continue to increase, that at the time of his DAT scan (Aug, 2015), my son's PSP DX could not be made until enough time passed to bring in more information.
I do not know if the body starts off with similar symptoms of PD (called Parkinsonism that are common of all neurological disorder beginnings) and then, unless there is intervention, continues on towards it's intended DX of PSP or CBD or MSA or ???? I so suspect that to be the case.
It is my hope that soon there will be a "means" to intervene and eventually a "means" to prevent it.
As I wrote a post introducing my son to this site, PD TO PSP, I hope to write a post that captures his journey within PSP.
I do wrestle with my decision to NOT having talked him out of giving up being fed....would he have had an opportunity to participate in the Biogen Trials or would he have just suffered needlessly .............that and other questions, for me, have no answer.
My son died May 4, 2017. He was barely 55 years old.
My heart aches for you ... and the what-would-have-beens. I’m seeing that there is no one doctor that can spot the PSP from the get-go .. that it truly is a matter of time that pushes the examiner to the “intended DX of PSP or CBD or MSA or ????”
I feel your anger and your sadness, enjoysalud!
Thank you for keeping in touch with us here in the PSP struggle! Your experience helps us understand better.
xoxoDorie
Hi Dori, yes contributing to this site is cathartic (at least for me) and with feedback causes one to re-examine oneself. I don't think I feel angry, but I appreciate your comment. Maybe I am. I do know that sometimes the overwhelming sadness surprises me.....especially when it comes unexpectedly.
I think back, even with a different path, I don't know that there would have been a different result from what ended up happening. If the PEG had NOT been installed would my son have lived longer? I don't know. I do know that the 2nd bout of pneumonia weakened him. Would he have lived longer taking care of the pneumonia with antibiotics? 2nd guessing, guilt, the"path not taken" is/are all part of this disease.
I wish you well and keep us all in my prayers.
Margarita
Margarita, it appears I let my own anger at this dreadful disease skew my perception of your post. I recently attended a caregivers’ retreat and the first question they asked us was to give one word to describe how we feel ... mine was “angry”. I do apologize.
The path not taken will always haunt us, I fear!
xoDorie
That is just so heartbreaking. PEG feeding is so controversial and with good reason. Be assured that you supported your son as he wished to be supported and all that really matters is your ❤. PEG feeding was usually developed for infants and children. It morphed into a feeding methodology for seniors and other folks dealing with serious illness. At times, it has sadly become a convenience factor in feeding people who need a lengthy time period to eat, because it can deliver nutrition so fast. That in itself can be very dehumanizing for some people. I think we should always remember that as family, we try to do the best we can with the knowledge we have at hand. Sending peace to all.
Adrianna ❤
Thank you..........
Hi Dorie, this is all so confusing.
I was diagnosed June 17 with CBD following presenting with left side problems- dragging foot and rigid hand and general slowness of movement, slight tremor in left hand.
Previously in 2016 I had an MRI scan, lumbar puncture and electrical tests which my consultant frankly admitted he had no idea what the problem was! After CBD diagnosis at my 6 month review, I started physio excercises which helped to strengthen my muscles. My walking improved and my left hand was not so rigid. Although I was prescribed Levodopa I declined as I was managing.
I saw another consultant at my review 6 months later who sent me for a Dat scan. The results of this has come back as mild Parkinsons - no sign of tremor. However I am reluctant to believe anything these experts say in view of the fact that these awful diseases present with such similar symptoms in the initial stages. I am due to see him in the Autumn so it really is a case of playing the waiting game. Meanwhile my husband and I will keep going to the PS P/CBD support group just in case.
The trouble is this whole thing can take over your life to the exclusion of all else. I had to give up my job, at 60 I still feel very young but am in danger of becoming socially isolated. My neighbour goes to a gentle exercise class on Mondays so I am making the effort to do the same though I feel like a bag of nerves.
There is no such thing as a dumb question. Although I don’t post very often the subjects are all very interesting and the support is nothing short of amazing. To not feel alone is very heartening.
Sorry to rant.
Jayne
Jayne,
And there’s no such thing as a rant. I think this forum is not only helpful with information and support but as a venue for sharing our own thoughts, frustrations, confusions, etc. I find it cathartic to just be able to write it out and present a kind of timeline.
I know it is very difficult to be in the waiting game, wanting to have definitive answers. I hope in the autumn you will be able to name it. More than that, I hope you will be able to live not in anticipation of what is to come but for how good today is. (And that preachy advise was intended for me too!!)
Glad to make your acquaintance, best wishes, and fond regards, xoDorie
Thanks, Dorie,we weren’t going away this year but have decided to try and live as normal as possible till things change, so off to Corfu in May and July .
Take care, best
Jayne
That's the ticket! Corfu sounds wonderful. Enjoy everything!
Love, ec
Thanks ec. We go to the same place usually three times a year as my husband has quite a stressful job and it is like a home from home as the people and the owners of the hotel know us. Any problems and they are on the case! Can’t wait to get there as we have just had our worst weather in years.Roll on Summer!
Best
Jayne
Hi Jayne
I'm not sure what country you are in.
If you are in the U.K. and are seeing a local Neurologist then ask for a second opinion from a tertiary neurologist. This is your right and asking for it does not offend.
The tertiary level is there when the secondary level reach their limits.
Given the confusion and the fact that you have had a CBD diagnosis then - if you are in the U.K. - Telephone the PSP Assoc. helpline... They are great at stepping in and supporting in situations like yours.
0300 0110 122.
They have local reps. who will see you at home too.
I admire your resolve.
Strength to you.
Kevin
Hi Kevin, sorry not to reply earlier. You give so much useful info, would really liked to have met you yesterday. Hope it was a good day. Are you in the photo? I’m in the UK , Norfolk to be precise. How long have you and Liz been dealing with all this?
Off to local cafe for meet up with all sorts of people with various problems- ironic that I was going to be a helper!
Best
Jayne
Hi Jayne
I've been off with a nasty flu - I am gutted to have missed everyone on the 6th.
We're meeting again on the 20th and I will be there!
Liz was diagnosed about a year in from first symptoms in Summer 2012.
I'm glad some of my scribblings are useful. 
Are you not able to be a helper still? We don't need to fall on one side of a line or the other. I used to work in mental health and some stupendously good care was provided by fellow patients.
Its a bit of a bugger you have got this illness, but don't let go of your skills and competences until they go!
Wishing you the best
Warmly
Kevin
Thanks for this,Kevin. I don’t think the customers would like me spilling their drinks in their laps as l’m quite wobbly! Left hand is also very weak so can’t wash up but can clear the dirties when I can keep my balance!
We do singing so I let rip with that to encourage the others!
Best
Jayne😮😲
Echoing what others have said - it's common for this to be misdiagnosed as Parkinsons, that's what my Mum went through. She's now using a wheelchair within a couple of years of first onset of symptoms, so everyone is different.
I was wonderin what the hummingbird is you refer to, though? Thanks x
That was exactly what I said less than two months ago. I originally heard you couldn’t diagnose PSP from a scan/MRI. Then, after Bob had his MRI and they confirmed the PSP, I asked how they knew. It’s the hummingbird.
Good question
PSP - swallowing questions
Mom with PSP in PA & helpful book
PSP Treatment
PSP
