Welcome to PSP Blog !
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Progressive supranuclear palsy is a rare disorder where cells in some areas of the brain gradually sicken and die off, causing the individual great difficulty in movement and, later, in thinking. Its cause is unknown, but research is active. I’m a medical school neurologist who has been doing research in PSP since 1986. This blog is both for professionals and for patients with PSP and their families.
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What Is PSP?
Progressive supranuclear palsy is a “neurodegenerative disease,” meaning that it starts gradually and worsens slowly and its cause is a poorly-understood loss of brain cells. PSP is similar to Parkinson’s disease in its general slowness, poor balance and slurred speech. The two most common neurodegenerative diseases are Alzheimer’s disease and Parkinson’s disease, each of which has things in common with PSP and some important differences. For more info on PSP, click here.
Unlike Parkinson’s, PSP is rare, with 5-6 cases per 100,000 population, of whom only 1 or 2 carry the correct diagnosis at the time. This compares to 150-200 per 100,000 for Parkinson’s. Relative to Parkinson’s, PSP’s response to medication is poor to fair, it rarely has tremor, it commonly includes important loss of thinking ability and it almost always causes difficulty moving the eyes. (The “palsy” part refers to this last feature.) PSP starts at age 63, on average, compared to 59 for Parkinson’s. The most common first symptom is unexplained falls or personality changes.
OK, So What’s the Good News?
The good news is that there’s lots of research in progress on PSP. Some more good news is that while PSP outwardly looks very different from Alzheimer’s disease, the abnormality in the brain cells in PSP is very similar to one of the abnormalities in Alzheimer’s. Many scientists believe that the route to a cure or prevention for Alzheimer’s goes through PSP. So PSP commands far more attention from researchers and the biotech and pharmaceutical industries than its rarity would suggest.
This Blog’s Relationship to CurePSP
Even more good news is that you can find plenty of reliable information on PSP at www.psp.org, the website of CurePSP the leading organization serving those with the disease. You might like to start directly on their Education page.
CurePSP also offers educational videos, Webinars, pamphlets, meetings and symposia and a Web forum for patients and caregivers.
Full disclosure: I have volunteered with CurePSP for many years and serve as its Director of Research and Clinical Affairs. I wrote many of the things on its Website. Part of my reason for starting PSP Blog is to help CurePSP do its job.
Who Am I?
Until I retired in 2020, I was a neurology professor at Rutgers Robert Wood Johnson Medical School in New Brunswick, New Jersey. I’ve been doing research in PSP since the 1980s and I had a large referral practice of people with PSP and related movement disorders. In my retirement, I continue to be involved with PSP in many ways, but not in direct patient care.
What This Blog Hopes to Accomplish
PSP Blog will keep you updated on what I see as important and interesting things related to PSP. Some posts will discuss research findings or new treatments. Others will announce research projects starting to recruit participants. Such posts will include links for people with PSP or their caregivers to learn more and possibly to volunteer. There may be news about PSP clinical centers, opinions of medical products, and interesting scientific ideas in non-technical language.
Some posts on PSP Blog will be in non-technical language and others will be written for professionals. The terms “technical” or “non-technical” will appear in the keywords for each post. But you don’t have to upload a diploma in neuroscience to gain access to the technical-language stuff. Have a go at it, but keep in mind that some technical terms may look like ordinary English words but mean something very different.
The blog’s Comments function is not for medical advice. If you’d like to participate in a forum with other patients or caregivers, CurePSP has a good one. Click here.
I’ve always believed that I learn something new from each of my patients, and the power of the Web can magnify that. I also hope that the exchange of ideas will teach things to caregivers, researchers, medical inventors and pharmaceutical executives as well as to people with PSP themselves.
Please use the Comments feature to provide feedback on my posts, to comment on on others’ comments, to run your own ideas up the flagpole, and to suggest how I can improve the blog.
PSP Blog 
Hello. I believe my mother and two of her sisters (and nieces now too) have this disease. In addition to common bloodline (genetics?) they all grew up in Arkansas in their early years and started showing symptoms around 62-63 yrs of age. The presentations are strikingly similar and one of the biggest “aha” moments for me was when you mention the behavioural changes. I have read everything I could find regarding PSP and other neurodegenerative syndromes etc., and I am convinced more than ever this is the diagnosis we have been looking for (going on 12 years or so now). The age of onset, balance issues, choking, difficulty swallowing and slurred speech, short-term memory loss, behavioural changes, difficulty reading or writing…but no tremors to speak of, it’s all there and she has been to anyone who will take an interest, but now we are expat Americans living in New Zealand so access to resources can be a challenge. Looking forward to more information.
I didn’t think that PSP was heredity,
There is a genetic component to the cause of PSP, but it’s not strong enough to make the disease appear in multiple family members except in a few rare cases. A person may have to be unlucky enough to have the abnormal version of multiple genes plus a toxic exposure or two to develop PSP, and the chance that more than one person in a family has all those things is low.
My husand and his sister both have psp and both had hemochromotosis…any correlation?
No connection is known, but this provides a genetic clue. Assuming that both PSP (in this family) and hemochromatosis (ditto) are each caused by a different single gene mutation, those two genes could be close together on the same chromosome, both victims of a deletion or transposition of a short stretch of DNA. I’ll bring your post to the attention of a geneticist colleague.
My mother has PSP with non fluent aphasia and unlike most people with PSP her first symptom was with her speech. At this time she is unable to talk and her writing is being affected. She is able to walk and is generally able to take care of herself, but communication is rapidly disappearing. Her ability to process what she reads is now being affected as well. Her eyes are also affected. So far none of the progressions of this disease follow my mother’s pattern of decline. Just wanted to put my 2 cents worth in. It is heartbreaking to watch her deteriorate as it is for most people, but on top of that her career field was in editing….
Hi,
My dad is 73 and was diagnosed with PSP this past February, though his symptoms started about 3 years ago with a foggy head. He has been declining rapidly in the past few months.
We went through much testing before finally landing at the diagnosis. His slow eye movement is what finally gave it away. But one early test that was run on him was a heavy metal test, which showed a dangerously high level of lead in his body. The weird thing about it was that he had no exposure to lead…..or so we thought. The only exposure he had was in the hair dye he used, Grecian Formula. Which he had used for years.
Is it possible that his PSP could be a result of a toxic substance like lead in his system, from hair dye? I know lead in hair dye is banned in other countries. I’d love to know if anyone else suffering from PSP also used Grecian Formula.
This is the saddest disease, today my father said he is disappearing. I’m not sure he meant it in the sense I understood it, but it’s very true. His loud, outgoing, smart, friendly personality is just a shadow of what it once was.
My best,
Theresa
Grecian Formula’s active ingredient is lead acetate, which would only get into the body if there’s some break in the skin or if the hands aren’t washed well after applying the dye. Of course, either of these could have been the case for your father. The relationship of PSP and hair dye has never been studied to my knowledge and I’m not aware of any other reports of lead being associated with PSP. Furthermore, the type of brain damage that lead can do does not look that the damage of PSP. However, the cluster of PSP in northern France may well be the result of multiple metals that we know were processed in that local area over many years. Perhaps lead was one of them and perhaps it can, in combination with other metals, cause PSP. I’m working right now on a project to understand the cause of the cluster and will definitely include lead in the inquiry. Thank you for bringing this to my attention!
Hi, my mother who passed from PSP at age 82 several years ago also died her hair, since her 50s…
Sam
Hair dye has been evaluated as a risk factor for PSP. Its use proved no more common among those with PSP than among controls without PSP of the same age.
My Husband has this awful psp.it’s so hard to watch him struggle now his throat is bothering him I want to breath for him.we have hospice in now they don’t know as much as we do cause they have never had anyone with this diease.what can I do to help his throat
I’m sorry to hear about your husband’s illness. You don’t provide enough information for me to give advice, and in any event, I can’t give medical advice to patients I’ve never met or examined. But your husband’s doctor or hospice director is welcome to email his/her contact information to me at (golbe@rutgers.edu).
I’ve been searching for a current blog site. This is great. My husband has had PSP going on four years but , of course like so many, I saw something wasn’t right about three years before that.
I just want to say that his grandfather had a neurological problem, his father had Alzheimer’s and his mother had something that affected her balance. I definitely think Tau protein is genetic.
My husband is now 68.
Continue the good work.
It’s a lot of work to write a blog and I’m very glad to get positive feedback from you and others. Thank you.
You could well be right that there’s a genetic condition running in your husband’s family, but you can’t go so far as to say that tau protein (abnormalities) are genetic in general. At least 98% of people with PSP have no known relative with PSP and the studies attempting to find a greater prevalence of Alzheimer’s in the families of people with PSP have been contradictory. So let’s not frighten the families of people with PSP unnecessarily.
You might want to speak with a genetics counselor to see if any of the available genetic tests might be appropriate for your husband to have.
What is the average expectancy? If ten years , is that from diagnosis or symptoms?
The average survival of people with PSP is 7.4 years from the onset of symptoms. For those with the (more common) Richardson’s syndrome form, it’s about 6 years and for the (less common) PSP-parkinsonism form, it’s about 10 years. Keep in mind that these are only averages. Close attention to avoiding complications like falls and aspiration of food and drink will tend to land you on the good side of the average. Then there’s the possibility that one or more of the new “neuroprotective” treatments being tested now will work. That could improve these average figures significantly.
Are there any clinical trials going on now for the Neuroprotective treatments?
Yes, there are a few small trials. Visit http://www.clinicaltrials.gov and search on PSP to bring up a list showing which ones are currently recruiting. The database at that site includes contact information and many other details on each study.
I am happy to have found this blog. I love the curepsp website! I printed off a big chunk of info from that site when my mother was given the diagnosis 4 years ago. She had symptoms that were most closely identifiable as Parkinson’s and yet the dr was never satisfied with that Dx as she never had resting tremors. She has had motor symptoms (balance,falling) for at least 10 years before diagnosis with PSP. Her diagnosis came after she suddenly had speech difficulties and they found her abnormal eye movement (nystagmus I think). Her lifetime of singing opera helped delay some of her vocal symptoms they (university of Utah) said. One thing she does not appear to have is major personality changes. She is still very loving and agreeable, never combative or difficult. The only thing she ever had in that regard was a lack of ability to understand her own decreasing abilities. She has been on hospice for 2.5 years now. I haven’t brought her to see the docs at the U in a few years. Do you think it would be worthwhile? It is very hard to take her places due to her almost complete immobility. Do all PSP pts have the personality changes?
Thank you,
I can’t give individual, specific medical advice here, but in general, when you have a rare disease, it’s good to touch base with an academic specialist regularly. Fourteen years is a very long time to have PSP, so maybe the diagnosis needs to be reconsidered, and general neurologists are not usually trained for that.
As for whether all people with PSP develop “personality” change, the answer is no, but almost all do eventually develop some sort of behavioral and/or cognitive change. Close family members are often oblivious to such changes because they see the patient every day and may have “redefined normal.”
Just to let you know, after my mother passed away In 2018, we had a brain autopsy done (the Mayo Clinic in Jacksonville) and the diagnosis was confirmed to be that of PSP-Parkinsonism.
Liz: Thanks to you, your family and your departed mother for the generous donation of her brain as part of the autopsy procedure. It will make a big difference to PSP research.
You mentioned two forms of PSP. How do I know which form my husband has?
The classical form of PSP that was described in 1963 is now called Richardson’s syndrome and accounts for about half of all autopsy-proven cases. Next, with about 30% of the total, is PSP-parkinsonism, which starts out looking more like Parkinson’s disease and includes more tremor, levodopa responsiveness and asymmetry; and less dementia, falls, gaze palsy and swallowing problems. PSP-P has a more prolonged course than PSP-RS. The others each account for less than 5%. The most common of these rare presentations is PSP-corticobasal syndrome. The much rarer ones are PSP-pure akinesia with gait freezing, PSP-postural instability, PSP-behavioral variant frontotemporal dementia, PSP- promary progressive aphasia, PSP-progressive apraxia of speech and PSP-cerebellar. All have the same appearance under the microscope, but in slightly different parts of the brain.
My mother passed away this year after being diagnosed with Parkinson’s PSP about 7 years ago. You could tell in her eyes initially that something wasn’t right and she was falling a lot. Her mood changed and she showed early signs of dementia. Soon after she was able to speak but unable to figure out what to say so she would repeat anything you said to her. Eventually she could not walk, talk or feed herself and did not know who I was. It is an awful disease and breaks my heart.
I’m sorry to hear about your mother and I know that your experience has been shared by many thousands. Please consider helping in the fight against PSP by contacting CurePSP (psp.org or 347-294-2873) and volunteering your time or effort, or making a donation to help CurePSP cure PSP.
My father has PSP, was originally misdiagnosed with Parkinson’s. He is deteriorating so fast. It is so hard for us and for him. I want to know how he got this terrible disease. I read your article about external factors. Are there any links between radiotherapy and PSP? My father had colorectal cancer and received radiotherapy, among other medications. A year later he started falling and was diagnosed with Parkinson’s, which now we know it is PSP. I just don’t know of anyone in our family who has had this disease. Thanks for your help!
Brenda: Sorry to hear about your father. We know of no links between PSP and radiation or radiotherapy, though the matter has not been adequately studied. Only a small fraction of the population has ever had such exposure, so you’d need a huge group of people with PSP to notice an effect statistically.
Thanks for your prompt response! I have another question. When he has had X Rays or MRI’s his motor function improves to the point he has been able to walk without assistance for short periods of time. Then after a week or so goes back to his normal “PSP” state. It has happened twice already. Does the electromagnetic waves used on X Rays have some temporary healing effect on PSP patients muscular function?
My husband began to show unusual symptoms, at the age of 53, in the fall of 2008. He was diagnosed with PSP at Michigan State University in the fall of 2014. He died in the fall of 2019.
We’ve heard of no family history of PSP and wonder, broken-hearted, what caused his disease. He was very strong and healthy his entire life, hardly catching cold or flu and recovering practically overnight.
Hi Dr. Golbe,
Is the study on the PSP cluster in Northern France still ongoing?
Have lead or other metals been determined to be a factor in familial PSP or PSP in general?
Josh
Josh– Yes, I’m still working on that cluster, both from an epidemiological standpoint and together with laboratory colleagues who are using stem cell models of PSP to examine the effects of the suspect metals. But so far, neither lead nor any other metal has been clearly determined to be a factor in the cause of PSP. — Dr. G
Hello,
My grandfather has been diagnosed with PSP and it’s progression is to the point where he’s having difficulty reading – which is his one last love and joy since his physical symptoms are greatly impacted. Do you know of, or can you recommend any assistive tools such as guide lines that can help him hold on to his love for reading a little longer?
Hi, Viki: As PSP causes many different possible eye problems, I’d recommend a visit with a neuro-optometrist. They can evaluate what specific sort of eye problem is responsible for your grandfather’s reading difficulty and prescribe the appropriate counter-measure.
My husband had prisms put in his glasses. They helped for a while. After that, we relied on our state’s library for the blind to send audio books. They were great.
Generally prisms work for the problem looking up or down with both eyes. But they don’t generally work well for double vision in PSP although they work for double vision of other causes.
Hello Dr. L. Golbe,
I just discovered your blog through the CurePSP website. My mother was diagnosed with CBD/CBS in 2019 but has had symptoms for the past 6-7 years. After a recent GI infection, her condition has greatly declined; however, she is still able to use her walker very short distances, can speak/have conversations (although she does have difficulty speaking), and eat/drink (although not enough). She seemed to decline steadily over the past 6-7 years, but the GI infection really took a lot out of her. Is it possible she will return to what her baseline was right before the illness? We are getting hospice involved, but her prognosis is all over the place (2 months to 1 or 2 years). How can you tell when a CBD patient is really that close to the end? Thank you very much for taking the time to read this and I hope your year is off to a great start.
Hello Dr. Golbe,
My husband started having some symptoms in 2019, such as behaviour changes and in 2020 he had a few falls. He was still doing well last year, going for walks by himself and now he does go for walks, but his balance is such that we are scared to let him go alone. I see that his swallowing is being affected now. As is the case, we had a diagnosis of Parkinson’s last year and only last week, we were told that he has psp. This is dreadful news for all of us and I am very worried about him. Dr. Golbe, do you think there will be a drug that could help my husband and many others who are suffering from this disease? I know that there is research going on, but will it be possible in his life time. Also, I saw in one of the our other posts, that there is another disease that mimics, psp called AIS – a treatable psp mimic – do you think it would be worth to ask the doctor to do this test.
I would like to mention here, that any treatment that can benefit my husband even slightly is worth considering – I was wondering why these treatments are not offered to patients, for example the electrical treatment that was done in Montreal, stem cell done in China.
People living with this disease, their families and caregivers, I am sure are hoping for something, just something that can help their loved one.
Dear Ms. Ahmed:
I’m sorry to hear of your husband’s illness. You’re asking some good questions.
First, it’s very hard to predict how well, or how soon, new drug ideas will reach fruition. The pace of drug trials for PSP has picked up post-Covid, so I suggest that your husband be evaluated by a center with a reputation and particular experience in PSP. That’s where the drug companies will be testing their drugs. Check out the listing of CurePSP’s Centers of Care for starters. https://www.psp.org/ineedsupport/centers-of-care/
Next, testing for autoimmune cerebritis is not necessary for most people diagnosed with probable PSP. The specifics are mentioned in my post on that subject: https://psp-blog.org/2022/02/15/a-catalogue-of-autoimmune-mimics/ You might consider showing it to your husband’s neurologist.
Finally, the treatments you mention are still highly experimental and are not ready to be used widely. My post https://psp-blog.org/2021/12/10/a-warning/ details the methodological problems in the report from China on the stem cell treatment. The report from Montreal on the transcranial stimulation was one positive study, but several negative or equivocal studies have preceded it. So the jury is still out on that. The treatment does have its possible side effects, and insurance doesn’t cover it for PSP, so we should make sure it really works before using it outside of a research protocol.
I hope these comments are helpful.
Dr. Golbe
Thank you for your reply Dr Golbe
I was also wondering if you know anything about the study that was done in the UK:
https://www.bbc.com/news/uk-england-hampshire-58641372#:~:text=A%20woman%20has%20become%20the,and%20gradual%20loss%20of%20mobility.
Do you have any information on the study outcome? It looked like something promising.
Thanks
Sayada
Dear Sayada: There are two PSP trials in progress at Southampton and the article you link to doesn’t say which one they’re talking about. One of them tests a monoclonal antibody given intravenously. It binds to tau in the cerebrospinal fluid, preventing it from spreading through the brain. The other tests an anti-sense oligonucleotide given as injections directly into the spinal fluid. It is strands of RNA that block the production of tau inside the brain cells. I have to say that the second, the ASO, is more promising, as previous kinds of monoclonal antibodies for PSP and Alzheimer’s have failed, and an ASO treatment for muscular dystrophy does work. Both PSP trials are taking place at multiple other centers, but neither has been completed to date.
Dear Dr. Golbe
I was wondering if the above mentioned trials would be listed in the clinicaltrials.gov website? I am not sure how I can search for them.
Also, in your article “A Paradigm Shift” there is technical information that I do not understand, but my question here is, does this now complicate the research process? Would a medication that is targeting Tau aggregate be useful? or now scientists and researches have to change the course completely?
Thanks
Sayada
To search clinicaltrials.gov, type the name of the disease in the appropriate box on the home page. You can also enter the name of a drug in that box.
Let’s assume the new discovery about filamin-A is corroborated by other researchers. Even then, tau will still be important as a potential drug target because it’s tau that directly damages the brain cells. The optimal treatment/prevention for PSP might work better at that stage of the process than at the earlier stage, where filamin-A is involved.
Dr. Golbe,
My mom was recently diagnosed with PSP this January. Her first physical symptom appeared in August 2020 which was slurred speech. But looking back, I remember around March 2020, her restless legs syndrome has worsened to the point that she can only manage ~3 hours of sleep. She had mild RLS until that point.
September of 2021 she was prescribed escitalopram which improved her RLS symptoms and allowed her to sleep for 7 hours straight, but now the effect has lessened and she can only sleep for around 4-5 hours with her RLS flaring up again. Is RLS a common symptom for PSP patients?
Thanks
Lance
Yes, RLS does happen in PSP, though not as often as in Parkinson’s, MSA or dementia with Lewy bodies.
My father is suffering through the last stages of PSP. He is an organ donor and would like to donate to PSP research. Can you please provide direction? As part of this process will they validate that he in fact had PSP?
Thank you!
This is not an easy decision and your father deserves many thanks for his generosity.
Please contact CurePSP for instructions. https://www.psp.org/ineedsupport/braindonation/ or 1-800-457-4777.
A detailed report of the diagnosis will be mailed to you and to your father’s doctor, if you so instruct.
My grandfather passed from PSP in January. The end stages are very challenging both physically and emotionally. His organs were donated to the Mayo Clinic Neuropathology Laboratory in Jacksonville FL. They sent a very comprehensive letter to our family confirming the diagnosis and giving other pathological information. Not knowing where
You reside, this would be the best USA route in my opinion.
Thank You so much DrG for all you’ve done and are doing great!! I am awaiting diagnosis
Fear complete loss of my vision
Is this common in PSP?
Dear Ms. Fischer:
No, complete loss of vision is not part of PSP. It doesn’t affect the function of the eye itself. But PSP does affect the ability of the eyes to aim at the target and to keep still once the target is acquired. So PSP does reduce visual performance, but not to the point that most people would call “blindness.”
Thank you again Dr G
no luck wtg ophthalmologist
I also suffer Extreme light sensitivity
Sometimes the light sensitivity of PSP can be from poor blinking, which allows the eyes to dry, which causes inflammation, which makes it painful for the pupil to constrict in response to light. If your ophthalmologist is unable to help, try consulting a neuro-optometrist. Dr. Golbe
Hi Dr. Golbe,
What are the best diagnostic tools currently available to diagnose PSP, beyond the clinical exam by a neurologist? Are there specific blood, CSF, and/or brain imaging tools that you recommend? Regarding tau tests in either blood or CSF, would you recommend p-tau181, p-tau 231, or any other specific types of tests? I haven’t found a PSP diagnostics webpage that covers any tests besides the clinical exam, so I thought I’d ask here. More specifically, are there any other tests you’d recommend when trying to determine if a complex patient has Dementia with Lewy Bodies versus PSP?
Additionally, is it accurate to say that even though PSP is a tauopathy, that tau levels in CSF and on tau PET imaging can both be normal in a patient with PSP? (That the tau issues seen in PSP are only found in brain tissue?)
Thanks for your blog and work.
Dear C:
It’s still true that an old-fashioned, careful history and neuro exam by a experienced movement disorders specialist are the best test for PSP. The next best is MRI using the “magnetic resonance parkinsonism index,” but that’s hard to apply in a standardized way. Tau PET and CSF tau still have too many false positives and false negatives (which answers your second question). The other problem with MRI, PET and CSF is that while they may be good at differentiating PSP from healthy people or from those with Parkinson’s, they’re not necessarily adequate for differentiating PSP from corticobasal degeneration and other tauopathies or even from synucleinopathies such as MSA-parkinsonism or dementia with Lewy bodies. Also, most of the trials of those diagnostic procedures have not used patients with equivocal or very early-stage symptoms, where a test is most needed. But we’re getting closer all the time.
Dr. G
Hi Dr. Golbe,
Thank you for this helpful information. If it’s alright to ask follow-up questions, I wondered:
– Is it possible for a radiologist and/or movement disorder neurologist to calculate the “magnetic resonance parkinsonism index” (acronym looks to be ‘MRPI’) on a non-contrast brain MRI that has already been done? Or is the MRPI something that has to be ordered at the time of the (non-contrast?) brain MRI before the imaging happens? Is MRPI usually offered at academic medical hospitals?
– It sounds like there unfortunately aren’t any specific blood, CSF, or imaging tests/biomarkers (besides MRPI on brain MRI) that can help rule PSP in or out? I understand Neurofilament Light Chain (NfL) is very recently available through Labcorp as a blood test. Could this test help differentiate between PSP and DLB? Or perhaps the newer synuclein-based biomarker tests for DLB (Amprion’s SYNTap CSF test and/or CND Life Sciences’ Syn-One skin patch test)? I’m guessing that it would not be expected for a PSP patient to have either of these tests come back positive/abnormal for alpha-synuclein if I’m not understanding correctly?
– How can PSP be considered a tauopathy when CSF tau and tau PET can both be normal in PSP patients? For other tauopathies like Alzheimer’s, my understanding is that you’d expect abnormal levels of tau in the CSF (and an abnormal tau PET scan as part of a trial), if I’m not mistaken?
Thank you so much for your time and help. I wasn’t having luck finding PSP diagnostic biomarker information elsewhere and appreciate your blog and time/help.
Hello Doctor Golbe
I wanted to inquire about the red light therapy that has been mentioned on: https://pspawareness.com/blogs/psp-q-a/red-light-therapy-testimonial-for-use-with-progressive-supranuclear-palsy.
According to this information, there is some use for this kind of therapy for psp patients. Can you let me know if this is something that can be looked into.
Thanks
Dear SA: Red light therapy has not been shown to be effective against PSP, to my knowledge. My search of the medical literature found nothing on it. I’m happy for the one person mentioned on that website who seemed to benefit, but the experience of one person cannot be used to justify further use outside of a formal clinical trial. Nor can I think of any theoretical reason why infrared electromagnetic radiation (i.e., heat) should help. As with any new treatment idea, one must always look carefully at the motivations of the people offering it. All that having been said, I’m always open to learning something about PSP, so if there’s patient trial data or a justifying scientific mechanism that I don’t know about, I’m all ears. Dr. G
Doctor Golbe
Thank you for the answer. However, do you think that this kind of therapy would have negative side effects? As a person who is dealing with this disease, I am ready to use anything that may have a very slight chance of helping my husband.
Thanks
I can sympathize with the need to try to do something for a disease like PSP, but I doubt that there’s even a slight chance of benefit from standard red light therapy applied to the face. The light is fully absorbed by the skin, so the brain and other organs are not exposed. Even the most avid supporters of red light therapy don’t claim any benefit other than for the skin (or, via changing the eyes’ perception of light, for the sleep cycle). Red light seems to work by increasing the metabolism of skin cells. That means that viruses such as herpes could become reactivated, tiny tumors could be stimulated to grow, and other effects. Here’s a list: https://support.joovv.com/article/244-what-are-the-contraindication-and-precautionary-warnings Besides, there’s the abstract moral hazard: Should we encourage and enrich the huckster selling swamp water to desperate people? As a physician, I was taught to avoid that — even if the only harm to the patient is in the wallet. Yes, physicians should offer hope, but hope based on science, not social media testimonials.
Now — there’s a more complicated kind of red light therapy applied to the scalp and the lining of the nose and is accompanied by a flashing light. It’s called “photobiomodulation and visual stimulation.” There’s very preliminary evidence that it can help Alzheimer’s disease, and there are ongoing trials for AD and Parkinson’s disease. It has never been tested against PSP. The risk of side effects seems small but could include heat damage to the surface of the brain. The company that makes the device is trying to sell it to the general public for all sorts of things, including slowing down normal aging, without published evidence of efficacy. At this point, it can’t really be considered any better than placebo, but I’m keeping an open mind.
Greetings. My husband has been diagnosed probable PSP. Of all the difficulties he’s dealing with, his biggest complaints are about dizziness and lightheadedness, difficulty with his eyes (dryness, eyelids). He spends many hours laying down with his eyes closed since it’s the only way he can deal with symptoms. Is there any research being done to help manage this particular aspect of PSP? Thanks ESP
Dear ESP: There’s no research specifically addressing those symptoms in PSP, but your husband’s neurologist or PCP might be able to find some sort of treatable cause other than PSP. Things like low blood pressure upon standing, tiny strokes, and side effects of (perhaps unnecessary) medication are treatable things that can affect people with PSP. The dry eyes are often treatable and you might want to consult a neuro-optometrist or a neuro-ophthalmologist for that.
Thanks. Appreciate all you do and glad I found this blog. Best
Hi Dr. Golbe, In your March, 2021 CurePSP Ask the Doctor presentation, you mentioned that you recommend a liquid liposomal form of CoEnzyme Q10 to your PSP patients. My husband (who has PSP) has up until now been taking 8 softgels (2400 mg per day) of Costco’s CoQ10 formulation, but we would like to instead follow your advice. Would you be willing to help us to understand which specific brands/formulations you recommend? There seem to be large number of choices on the market. Thank you very much in advance.
Most PSP experts don’t think coenzyme Q-10 does enough to bother taking. When you average all PSP patients as a group, it’s true that the benefit is small (although statistically significant). But I’ve found that some patients do notice a clear and useful benefit, and the majority who don’t after 2 months can just discontinue taking it.
I prescribe (or before I retired, I prescribed) only the liposomal form, as the regular form doesn’t get into the brain. The dose of that form is 300 mg per day, usually taken as 100 mg 3 times a day, but if taking the whole 300 mg all at once doesn’t cause stomach upset, then go for it. I’ll repeat: After 2 months, the patient and caregiver should decide if it’s helping, and if it’s not, it should be discontinued.
The double-blind trial supporting my opinion is: https://pubmed.ncbi.nlm.nih.gov/18464278/
Thank you very much, Dr. Golbe, this is very helpful guidance and we will give it a try. Thank you, too, for bringing the very good news about Asceneuron’s drug candidate ASN90. Wonderful.
Hi Dr. Golbe
Thank you for this information about the coenzyme Q-10. I have a few questions regarding this drug. Is this drug only available by prescription, and is it available in all pharmacies?
Also, when you say “Benefit” what kind of benefit are we looking at here?
Thanks
Sayada
CoQ-10 is available without a prescription. The liposomal form is hard to find in pharmacies, in my experience, easy to find on line. The benefit, according to the one good study of the subject, is mostly for gait and balance.
Hi Dr Golbe
Thank you for this information. I have ordered the CoQ-10 online and have started my husband on this from the 4th of March.
I had a question regarding one of the things that my husband is experiencing. I have read that psp patients usually experience backward falls, but my husband tends to fall forward. Even when he walks, the risk we see that his body moves forward and he could fall forward. I am not sure if some patients have different sysmptoms. Is this common for psp?
Thanks
Sayada
Dear Sayada: Most, but far from all, falls in people with PSP are backward. So, forward falls should not cast doubt on the accuracy of the diagnosis of PSP.
Greetings again. Wondering if you have some insights regarding low prealbumin levels and psp. My husband is suffering from swelling of ankles & his GP believes it’s related to low levels of protein. My husband eats a well balanced diet, so I was wondering if chronic inflammation due to PSP is possible (versus dietary malnutrition). Thanks Emma Suarez
“Prealbumin” is an old term for transthyretin, which is a protein in the blood with multiple functions. Malnutrition wouldn’t reduce the transthyretin without reducing the other blood proteins. If the other proteins, especially albumin, are in fact reduced, that’s a good reason for ankle swelling. Although a subtle form of chronic inflammation may occur in the brain in PSP, it doesn’t cause swollen joints or tissues. (However, Parkinson’s disease does commonly cause swollen ankles, worse on the side more affected by the movement problem.) When swollen ankles occur in someone with PSP, the most common cause is either a side effect of amantadine (a medication commonly given for PSP) or inability to move the feet/legs enough to mobilize the normal tissue fluid that leaks out of the blood vessels.
I hope this information is helpful.
Almost 4 years ago my mother was diagnosed with PSP. I am here fulltime caregiver. Live in a small town so there isn’t much support groups for caregivers like this. She has become almost completely nonverbal, and the lost look in her eyes kill’s me. Sometimes at night I go into her room and pray, pray that she doesn’t have to suffer anymore. But then the greedy side of me doesn’t want her to go. But she’s in so much pain. I have to keep her medicated and to see her like that is heart wrenching. So hard to watch the one who you admire, that loves unconditionally in this state. I hate any type of diseases and cancer with a passion. One thing I do every night, I kiss her and tell her that I love her while tears roll down my face.
Dear Misty:
Thank you for sharing these heartfelt feelings. Wishing for a loved one to stay with you longer despite their physical suffering isn’t greedy, selfish or cruel — it’s just your love for them and wish to be with them regardless of the circumstances. Your nightly kiss and words of affection convey this very well — PSP does not affect a person’s ability to understand speech or emotional communication.
Some suggestions:
1. Some types of pain in PSP can respond to injections of Botox or similar medications into the tightly contracted muscles, if the volume of muscle involved isn’t too large. Movement disorder specialist neurologists, orthopedic surgeons and physical medicine/rehabilitation specialists know how to do this.
2. Levodopa, which is usually tried in PSP but typically loses any benefit by the 4th year, can cause painful muscle contractions called dystonia if the dose is high. If your mother is on it, you might want to ask the doctor about reducing it.
3. The painful dystonic muscle contractions of PSP can respond sometimes to muscle relaxants like Flexeril, Zanaflex or clonazepam.
4. Consultation with a pain management specialist may be useful. Muscle pain that’s too widespread for injections of Botox can sometimes respond to intravenous injections of lidocaine or other non-opiate pain medication.
5. Your small town is far from an in-person caregiver support group for PSP, but CurePSP has caregiver support groups that meet by Zoom. Contact info@curepsp.org.
Dr. Golbe
Thank you for your kind words and wisdom. I am sorry to say that On June 22nd AT 1:131 AM, my sweet Mother left this world. I never imagined that it would happen so quickly. Friday the 16th she received flowers from her sister, and she was smiling and smelling the sweet aroma of each and every rose. Friday after Hospice left, I was talking to the nurse and was asking, you don’t think anything is going to happen anytime soon do you, the sweet soul that loved my mother said, no I don’t think so, but only the good lord above is the only one that knows that. So, from Friday smiling and being able to eat and letting me know what she wanted, it went downhill in a hurry. From Sunday thru Thursday, I didn’t leave her bedside. They had me giving liquid morphine and Ativan to calm her down and keep her pain under control. It was the hardest things in my life to watch my mother take her last breath. But knowing that she isn’t in pain, hurting, suffering and no longer has to deal with the nasty disease PSP, helped me some. I miss her terribly but know that she is in a better place and not having to fight that nasty disease. It will take me a long time to get myself together but knowing that she was where she wanted to be, with me and my husband, helps my broken heart some. Thank you again for your reply, it truly came at a good time for me!
Dear Misty:
Please accept my condolences. It sounds like you were an excellent caregiver and that your Mother was lucky to have you with her in her final days.
If you’d like help in dealing with your bereavement, CurePSP offers an on-line support group specifically for that purpose. It meets on the third Tuesday each month at 2:00 PM Eastern. You can register at: https://us02web.zoom.us/meeting/register/tZwtdu-urz8rHdSU-qMSeeVgfEAMunr3e7bp
Dr. G