Lawrence I. Golbe, MD
I’m Emeritus Professor of Neurology at Rutgers Robert Wood Johnson Medical School in New Brunswick, New Jersey.
I grew up in Englewood, NJ, majored in evolutionary biology at Brown University, graduated from New York University School of Medicine and did a neurology residency at NYU-Bellevue Hospital. I completed that in 1983 and worked at Rutgers ever since, until retiring in 2020. I was director of the department’s Division of Movement Disorders and my research has been mostly on the epidemiology, clinical genetics and clinimetrics of PSP and other parkinsonian disorders. I have also worked on various aspects of Parkinson’s disease and led the clinical part of the project that ultimately discovered a connection between Parkinson’s and alpha-synuclein. You can see my publications here. I published my first paper on PSP in 1987 and in early 2019, my book, “A Clinician’s Guide to Progressive Supranuclear Palsy,” was published by Rutgers University Press.
I volunteered as CurePSP’s scientific director from 1990 to 2016 and now serve as Chief Clinical Officer, Scientific Advisory Board chairman and Board of Directors member. I still do research in collaboration with individuals and groups around the country; I review manuscripts for research journals; I give a couple of lectures each year to Rutgers’ neurology residents; I’m the formally designated mentor for two junior faculty members in my old department; I consult for pharmaceutical companies on PSP trial design and on implementation of the PSP Rating Scale; I work on my Italian and my ping-pong; I’m co-president of the Dwight Morrow High School (Englewood, NJ) Alumni Educational Alliance, an educational charity; I’m a perennial judge at my town’s middle school science fair; and much to my wife’s delight, I’ve finally learned to cook. And I write a blog on PSP.
PSP Blog 
I have previously read some of your research on PSP and atypical Parkinsonism. But this is the first time I’ve had the pleasure to review your blog and I find it terrific. I was diagnosed with MSA-P in 2008 and just became the first-ever patient named to the MSA Coalition board of directors. Besides raising awareness and funding for research, our community strives for your kind of clarity in writing to be consumed by “mere mortals” as opposed to medical professionals. To that end, have you ever written an explanation of MSA, and/or a compare/contrat of PSP, MSA and PD? Any pointers would be most welcome sir! Thank you.
Mr. Looney: Thanks for the positive review. You can get my articles on MSA (and corticobasal degeneration) from http://www.curepsp.org.
Hello, Mr. Golbe.
My name is Fabiane, I am Brazilian and my father has PSP. Since there isn’t much I can do for I am not in the field, I decided to create a blog to inform people in Brazil about PSP. I’ve just found out about your blog and I’d like to know if I can translate some of your entries and/or use the information you share in my blog as well. Of course I will mention you as the author and I will also keep a link to your blog everytime I use any information from it.
My objetive is to share all information I can about this horrible disease, because there are no support groups, sites or blogs in Brazil about it – and I think it’s crucial that family members and patients know what they are facing.
By the way, if you need information about cases in Brazil I might be able to help you by telling about the cases I know – aside from my father.
Thank you very much.
Fabiane Aguiar.
Yes, feel free to re-post my entries, but with attribution, please.
Dr Golbe,
Regarding your article, “Stay in School and Drink Rainwater” suggesting external / environmental factors may be factors. My sister is recently diagnosed with PSP. She has eaten much wild game , especially antelope (American Pronghorn) but mostly Mule Deer. In terms of epidemiology, perhaps there is a connection. Please forgive my ignorance. I am , however, so very motivated to see my lovely sister be given every chance so I wish to ask your guidance. She has seen 2 docs in Denver neither of whom have presented her with options for possible treatments other than palliative rx. I mean to say as for clinical trials , etc. Please, please help
Ms. Schooley: I can sympathize. This is a disabling illness, but symptomatic (“palliative”) treatments can help a lot. I’m not aware of any neuroprotective (“non-palliative”) trials that are recruiting right now, but if you keep an eye on http://www.clinicaltrials.gov and search on “progressive supranuclear palsy,” you will see whatever becomes available. You can also contact CurePSP for that information. The good news is that many drug companies are interested in PSP now and there will be a number of trials opening around the US and the world in the next couple of years.
As for exposure to wild game, I included that question in a case-control survey of PSP risk factors back in the 1980s. The result was an odds ratio of 0.6. That means that exposure to wild game was slightly LESS common among the 50 people with PSP (the “cases”) than among the 100 similar people without PSP (the “controls”). But the difference was not statistically significant, which means that it could easily have been explained by chance.
Dear Dr. Golbe, my mother had PSP and recently died, but had elected not to donate her brain. I have read in an article from 2007 that a *definitive* diagnosis of PSP can only be made post-mortem. Is that still true today as we head into 2017?
Still true, but a little less so than in 2007. We’re slowly getting closer to having a type of PET (positron emission tomography) scan that can label the abnormal tau in the brain in a living person. This will allow the neurologist to identify a specific anatomic distribution of pathology associated with PSP, thereby ruling out such non-tau PSP mimics as Parkinson’s, multiple system atrophy and multiple small strokes. But some tau-aggregating disorders can sometimes affect the same areas of the brain as PSP, mimicking its clinical effects and producing the same tau-PET image. These include dementia with Lewy bodies, corticobasal degeneration and frontotemporal lobar degeneration.
Another positive development is the new clinical diagnostic criteria for PSP that should be published some time in 2017. These allow neurologists to diagnose PSP in patients who have early or atypical clinical features.
Dr. Golbe, . It is now July 2017 and I have not seen any further blogs on the site where you were writing. Is it possible that you no longer write a blog? I would like to know as I find your material well written and very informative.. Thank you
Thanks, Maureen, for lighting that fire under me. I just posted something new.
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Thanks for that recognition. But I must share the credit with my mentor, Roger Duvoisin, and my colleagues at the time in our department’s genetics division, Alice Lazzarini, Scot Stenroos and Bill Johnson. Perhaps most important, I must point out the huge contribution to the genealogical work in Contursi by Giuseppe Di Iorio, a neurologist in Naples whom I recruited as a collaborator after I found that the families of both of my New Jersey patients with autosomal dominant PD came from that area.
Hello Dr. Golbe,
My husband was diagnosed with PSP 10 years ago. We were seeing a doctor in New York but after so many years of going into the city, he left his practice. My husband is declining and sits in a wheelchair. He still tries to walk but there are some days he can walk and others not. So we tried a doctor here in New Jersey, but after only three visits he said there’s nothing he can do to help. Is it to late for him? Is it worth going to any new doctors at this point?
Thank you
Marge
Marge —
I’m sorry to hear that your husband has PSP at an advanced stage. Of course, I can’t give specific medical advice for a patient I have not seen, but I can say that I don’t have any new treatments that are not available to his current neurologist. In general, people with advanced PSP just need to be kept comfortable and nourished both physically and psychologically and to have the risk of complications minimized. This does not require specialized neurological skills, just ordinary geriatric care. So it would probably be best just to ask his primary care physician to provide that. If he/she is not so inclined, ask for a referral to a geriatrician or a neurorehabilitation specialist.
Dr. Golbe
I would be interested to know if any of your patients have been exposed to acupuncture or other Chinese practices including herbal medications, particularly for chronic fatigue symptoms of PSP? I look forward to your response or other suggestions for the chronic tired feelings. Does this ever go away or is this an overall major and ongoing symptom of the disease?
MP
It’s true that the parkinsonian degenerative disorders like PSP can have fatigue as a symptom. But of course, many medical disorders that are much more treatable can also cause fatigue. So a primary care physician should be given the chance to evaluate anyone with fatigue regardless of what other disorder they may have at the same time.
Sorry, but I’m not aware of any trials or anecdotal reports of acupuncture or traditional herbal treatments for fatigue or other symptoms of PSP.
Hello, Professor, Golbe.
I have seen your interests in finding a cure for patients with Parkinson disorders, my mother is diagnosed with PSP in the UK, as a family We are looking for any treatment that can help her. We have been considering stem cells therapy and IPS cells by Dr. Shinya Yamanaka which was proved to work in Japan and trials has started for Parkinson’s patients.
Do you have any recommendations with regards to stem cells therapy or any trials that has been successful to to help patients with PSP.
Thanks .
Karem: There’s plenty of potential for stem cells in PSP, but there are no clinical trials just yet except for one in Italy that was stopped prematurely. If a drug is proven to be helpful for PSP but requires regular intravenous infusions, stem cells may be programmed to produce the drug and implanted into the brain. However, stem cells as replacement for brain cells lost in PSP is much more of a task, as the cells would not only have to survive in their new home, they would have to establish connections with the native cells, often at a distance. Furthermore, there are so many areas of the brain involved in PSP that implantation in enough sites to help in a meaningful way could be impractical. If and when I learn of a legitimate clinical trial of stem cells for PSP, I’ll write a post. You can also keep an eye on http://www.clinicaltrials.gov and http://www.curepsp.org.
Dr. Golbe Thanks ever so much for the time that you give for people all over the world .
Me and my family appreciate your advice.
We’ll keep following your updates.
Thanks
Dear Dr. Globe,
I had surgical aortic valve replacement about 6 months ago (tissue valve) and have developed some unusual eye pain with saccadic disturbance in the past few months. I’m trying to find a practitioner who can provide a diagnosis—preferably someone in Canada—and any treatment trials that may be recruiting patients. Are you aware of anyone who may be accepting patients?
Best regards,
Margaret
Dr. Margaret DeCorte, C.Psych.
Ottawa, Canada
Dr. DeCorte: Based only on the information you provide, the chance of this being PSP is low. You should start with an local ophthalmologist or optometrist, who may then refer you to a neuro-ophthalmologist if they feel that it’s neurological at all.
My husband is in the later stages of Parkinson’s. It is a genetic form which has at least three family members noted. My husband is constantly dizzy. He has Heart Disease as well so the Northera drug is not an option. Is there anything to reduce the constant dizziness? I’ve been following your publications since my husband’s diagnoses 2011. Your dedication and drive is admirable and much appreciated.
Carol: This is a blog about PSP, not Parkinson’s, but I’ll do the best I can. Keep in mind that I can’t give individual, specific medical advice here.
First, your doctor has to make sure that the dizziness isn’t just low blood pressure, which can be part of ordinary PD and also a side effect of many PD medications. If there’s no low blood pressure, then the dizziness could be a manifestation of loss of some of the connections of the inner ear or cerebellum caused by the disease. It can be treated like dizziness occurring in the setting of any other disease. Your primary care MD and neurologist deal with that sort of thing all the time. There’s no special treatment for it when it’s part of atypical Parkinson’s disease.
Some people with a balance problem describe that symptom as “dizziness.” If that’s the case, then physical therapy for balance retraining could help.
Thank you for responding. My husband has Orthostatic Hypotension due to Parkinson’s. We are aware of OH issues. We are also aware of how the inner ear can be deprived from the damage caused by PD. My husband has gone through physical therapy for many months with no beneficial results. I just wanted to see if there was anything that has worked for someone else not only for PD patients, but for PSP, MSA-P patients since there are commonalities. My husband is in stage 4 of PD. It is getting more difficult for him to function. I am trying to provide him with quality of life each day. My husband’s Primary Care and Neurologist have been very good. Unfortunately there are many unanswered questions for many people. It is not easy.
Dr. Golbe, thanks again for your time.
Regards,
Carol Darby
My father was diagnosed with PSP ~25 years ago and is still alive. How common is this?
Monika:
There have been very rare reports of people with PSP living past 20 years with the illness. A few rare degenerative disorders typically progress much more slowly than PSP. But probably a large majority of people who were diagnosed with PSP more than 20 years ago have some other condition, most likely “vascular PSP.” This is not a degenerative disease, but the result of an accumulation of tiny strokes, no one of which is large enough to have caused any sudden symptoms at the time. Some people with this condition stabilize, or nearly stabilize, if their stroke risk factors come under control.
Dr. Globe,
We lost our mother in 2010 to PSP. We all wondered if something she ingested contributed to her
Getting this horrific disease. I just read an article about Linda Rondstadt and her love of taking
Diet pills. Our Mom did the same. She used to hide them from our Dad and take them all the time. I know that It’s likely a long shot but maybe something in those over the counter pills contributed to this terrible disease. Mom also had RA and had years of gold shots.
Thank you.
Doreen:
I’m sorry to learn about your Mom and I applaud your keeping up an interest in the science behind PSP.
There’s no evidence that over-the-counter diet pills contribute to PSP. It’s true that amphetamines, the major component of such pills, can damage dopamine-producing brain cells (a fraction of the cells that are damaged in PSP), but they don’t cause a problem with tau protein, as far as I know. Nor is there evidence for PSP resulting from rheumatoid arthritis or from the gold-based injectable or oral drugs occasionally used for it. I have to add, however, that until we find the cause of PSP, it’s difficult to rule anything out with certainty as a contributor.
Best,
Dr. Golbe
Dr. Golbe
my father has diagnose PSP in 2021 at Hirslanden Hospital in Zurich. Other conditions are in good health. Do you know any new treatments in the world including stem cells which we could try? we had done several treatments such as DSA and Cure Cells, it shows a progress in term of talking and thinking but he is still complaining his constantly dizziness ( your reply to Carol 22 August 2018: First, your doctor has to make sure that the dizziness isn’t just low blood pressure, which can be part of ordinary PD and also a side effect of many PD medications. If there’s no low blood pressure, then the dizziness could be a manifestation of loss of some of the connections of the inner ear or cerebellum caused by the disease.— which no one ever told us before) and excessive eye closing. We have check his blood pressure almost everyday and within the normal boundaries. what specialist do we have to go to ensure inner ear connection? is it ENT or neurologist? Thank you
Dear Rico:
A list of all of the current experimental treatments I know of is in a post of mine from 6 months ago: https://psp-blog.org/2021/12/19/psp-treatment-trials-recruiting-now-or-soon/ The list has not changed since then.
In the US, inner ear problems are seen by ENT physicians, but that may not be the case in Switzerland. You should ask your father’s general practitioner or the physician at the hospital who originally diagnosed PSP.
Keep in mind that to properly check for low blood pressure, your father has to remain standing for 3 minutes.
Hello Dr. Golbe, I am a home health speech therapist in Bergen County seeing a client with suspected PSP. His family is asking for local neurologist recommendations that may be more saavy in this diagnosis. Do you have any recommendations, perhaps colleagues? Thank you very much.
Jennifer Martin
Fox Rehabilitation
Dear Ms. Martin: I don’t know of any PSP experts in Bergen County, NJ though there may well be some. So, I’d suggest the CurePSP Center of Care at Columbia, where Dr. Serge Przedborski is director or, a little less convenient to Bergen County, at NYU/Langone, where the CurePSP CoC director is Dr. Christine Stahl. At both places, there are certainly other neurologists well-qualified in PSP besides the center directors.
Hello Dr Golbe. My mom was just diagnosed with psp in early Dec. She has been struggling with the symptoms for a few years especially the vision. She has an issue with her throat where it basically gets “stuck” and she can’t take in any air. Some foods/emotions trigger it more than others but lately it has been happening 5+ times a day, lasting for a few minutes at times. It’s extremely scary to see, the neurologist say it doesn’t have anything to do with PCP but maybe you have other insight that may help. She lives in Rockhill, SC and has seen neurologist from Columbia,sc- Charlotte, NC (I’m not sure if there is one that specializes in PCP). Her symptoms have been progressing very quickly in the last 4 months and is falling a lot more so I’m very nervous of her falling while having a throat issue. Please help!
Ms. Giles: I approved your message for posting in case anyone else is having the same issue. We have communicated by email.
Everyone else: I’ve referred Ms. Giles and her mother to a PSP expert in their area. I don’t and can’t provide individual patient care through this blog, but I’ll just say for everyone’s benefit that a breathing problem at least superficially like the one in Ms. Giles’ mother can in fact occur in rare cases of PSP. It’s more common in MSA, which can sometimes be misdiagnosed as PSP.
If you’re looking for care at a center in the US or Canada with specific expertise in PSP, see CurePSP’s “Centers of Care” web page:
https://www.psp.org/ineedsupport/centers-of-care/
Hi Dr. Globe, I have just been diagnosed with PSP in Christchurch , New Zealandby a neurologist Dr. J. Parkin. I have read about the Clinical Trials that Ferrer will be doing sometime in 2013 (ASN90) and read your blog on the subject, with interest. I am keen to get on the trial ASAP not only to help myself but help others too. Can you let me know when the Clinical Trial stage is recruiting for the stage 11 trial, as I have tried to get more information from Ferrer and Asceneuron, but have jut been told that I should keep an eye out for signs in the Clinical Trial.org website. I am now dying and wish to get on the trial ASAP and wondered if you could let me know of any future developments. I am sorry to be so pushy but it is extremely important to me. I have a UK passport and would be happy to return to the UK if the trial is earmarked for there also. Thanking you in anticipation
Dear Mr. Booth:
I’m sorry to hear about your diagnosis. Ferrer is busily organizing its trial of ASN90 but I don’t know when it might start or if there will be study sites in New Zealand. Meanwhile, you could consider other trials for PSP. As you were advised, you can keep an eye on clinicaltrials.gov but for trials in Australia and New Zealand, there’s a similar site: https://www.anzctr.org.au/TrialSearch.aspx. A trial in Melbourne of sodium selenate as a disease-slowing agent for PSP is currently enrolling. Ask your neurologist if they know about that trial and recommend it.
Dr. Golbe
Dear Dr. Golbe:
My husband has been diagnosed with likely PSP, but we have been trying to obtain a firmer, and more delineated diagnosis. The two Cure PSP Centers neared us are VCU and Chapel Hill. Can you recommend either? The day before yesterday, my husband had a Syn-One test at UVA (which is not a cure PSP Center) to learn whether he is more likely PSP or Parkinson’s. I wrote to you by email a few weeks ago, hopefully to learn your recommendation before deciding. We’re keen to know going forward. Thank you.
Sincerely,
D. Mayo
Dear D:
Both UNC and VCU are great places to get care for PSP. I have no preference between them. Although UVA is not a CurePSP Center of Care, it does have an excellent movement disorders division. I just don’t know as much about them as I do about the other two, or if the neurologists there have anyone specifically interested in PSP.
Dr. G