Is there a Miracle Cure for PSP? [Rational PSP treatment & new research]

At present, we do not have a Miracle Cure for PSP. But that does not mean that a cure will never be available.

Diseases such as Hepatitis-C were incurable. They now have cures.

We should keep ourselves healthy for the future.

Some medications may decrease symptoms. Also, non-medication treatment is essential. Non-medication treatment includes swallowing training and balance training.

I am Dr Siddharth Kharkar, a Neurologist in Thane, Maharastra, India. I also work as a Neurologist in Mumbai, India and provide Parkinsonism treatment & Epilepsy surgery in Mumbai.

Let us read about these things.

As noted earlier, PSP is different than regular Parkinson’s disease.

PSP patients may have all the symptoms of Parkinson’s disease. They also have problems with eye movements (video below) and falling. Click here to know the complete signs.

This article is only for patients with PSP.

I am Dr Siddharth Kharkar, a Neurologist in Thane, Maharastra, India. I also work as a Neurologist in Mumbai, India. Come, let’s learn together about this important topic.

Will a miracle cure for PSP (Progressive Supranuclear Palsy) ever be available? 

We don’t have such a cure now. But let us put this in perspective.

When I was in medical school, medical students were scared of Hepatitis-C.

Hepatitis-C is spread like HIV, through nicks and cuts while treating patients. At the time, there was no miracle treatment. If someone were to get it, they developed severe problems like liver failure and liver cancer.

Does this disease have a miracle cure now?

Yes.

In 2013, the US FDA approved a very effective medication. The name of this medication is Sofosbuvir. With other medicines, Sofosbuvir can cure 94-99% of all patients.

Sovodak
Sofosbuvir is a near-miraculous cure for some patients with Hepatitis C.

It is difficult to predict when such a cure will be available for PSP. Not me, nor any other doctor can make a 100% guaranteed prediction.

But, we need to take care of ourselves in the present.

We should partake of the available treatment. We need to be ready to bear the future benefits of current research.

Levodopa for PSP treatment:

As noted in another article, PSP causes decreased dopamine activity in the brain.

Levodopa is an oral tablet. It goes into the brain, where it is converted into Dopamine.

Levodopa is very useful in Parkinson’s disease. So, people have tried using it in PSP.

The benefit of Levodopa in PSP is not predictable. About 25-40% of people benefit. The improvement may be incomplete. Levodopa may also become less effective after some years.

LevodopaToDopamine
Once it enters the brain, Levodopa is converted into Dopamine.

Overall, Levodopa can be very helpful, even if it is not a Miracle cure for PSP.

But, that is not the complete story.

PSP Subtypes and treatment

There is increasing awareness that there may be more than one variety of PSP. In 2017, the International Movement Disorders Society (MDS) described 7 variants:

PSP-subtypeCharacteristic
1. PSP-RS (PSP-Richardson)Typical “PSP”, with severe falling and eye movement problems
2. PSP-P (PSP-Parkinsons)Almost identical to Parkinson’s disease
3. PSP-OM (Ocular movement)with eye movement problems
4. PSP-PI (Postural instability)with severe walking problems and falls
5. PSP-CBD, PSP-F, PSP-SLThese varieties are rare.

It is not essential to remember all these varieties. Please focus on number 2.

Number 2 is PSP-Parkinsonism. Which translates into “PSP that behaves like Parkinson’s disease”.

PSP-P behaves like Parkinson’s disease in it’s response to Levodopa. Although still partial, Levodopa may have a marked effect on PSP-P.

The effect may also last for a longer time, often extending over many years.

window 941625 1920
Some variants of PSP are like Parkinson’s disease.

How many people have this variant? That is a matter of great debate. As I mentioned, this research is new, and people are still debating how to classify patients.

What it means for you – your response to Levodopa may be better than doctors earlier thought possible. We need to try it.

Amantadine for PSP treatment:

Amantadine is another medication used in Parkinson’s disease.

No one understands how it works. It was initially made to be an Antiviral, against the Flu virus. But doctors found it is useful for Parkinson’s disease.

leg 3229347 1920
Amantadine can decrease freezing – the feeling that your feet are stuck to the ground.

Amantadine may also be useful in PSP. In particular, it may help you in walking better.

Patients with PSP may freeze while walking. They feel like they are stuck to the ground. They cant take another step forward.

Amantadine may reduce these “freezing” episodes.

Most doctors will try Levodopa in PSP. But many do not try Amantadine.

Almost all authorities feel it should at least be tried in all patients. The authoritative Marsden’s Textbook of Movement disorders also recommends an Amantadine trial.

Other medications for PSP

These other medications do not improve movement dramatically.

But they can be beneficial for other problems such as depression and trouble opening your eyes.

MedicationMay help with
1. AmitriptylineDepression

May improve walking.

2. DonepezilThinking problems.

May decrease “Freezing”

3.CoQ-10Still in research stages.

Not a good option at present.

May help with movement.

4. ZolpidemSame as above
5. Botox injectionsAn excellent option for a particular problem (see below)

Botox injections are often overlooked.

In some PSP patients, the muscles around the eye are forcefully contracted all the time. You may not be able to open your eyes. This is called “Blepharospasm”.

As you can imagine, not being able to open eyes is a troublesome problem.

Botox relaxes muscles. Botox helps to keep the eyes open.

Botox is the same medication that some people use to smoothen out skin wrinkles.

Here is an excellent video of the process:

Botox injections are relatively safe. It takes about 5-10 minutes in the doctor’s office.

The main downside is that they are somewhat expensive.

Reference / Additional reading:

  1. A Review of Treatment Options for Progressive Supranuclear Palsy – Stamelou et al., CNS drugs – 2016

 

Will Deep Brain Stimulation (DBS) be the Miracle Cure for PSP?

DBS is not very useful for PSP at present. But perhaps it will be in the future.

Deep Brain Stimulation (DBS) is a small device. Through a thin wire, it can simulate parts of the brain.

DBS is beneficial for Parkinson’s disease. In Parkison’s disease, either the Subthalamic Nucleus (STN) or the Globus Pallidus Interna (GPi) is stimulated.

But, stimulation of these parts does not help PSP. So, PSP is not routinely treated by DBS.

DBS e1578942163505
DBS works for Parkinson’s disease. Ongoing research aims to make the use of DBS in PSP successful as well.

Newer research seems promising.

There is another brain area called the Pedunculopontine Nucleus (PPN). Newer research has shown that PSP DBS (Deep Brain Stimulation) may be done in this area.

We still are finding which stimulation setting would work in PSP. For example, high-frequency stimulation may work better in PSP.

Another newer concept is the stimulation of two areas together. Some doctors have suggested that stimulation of the PPN and GPi at the same time may lead to success in the use of DBS for PSP. This needs to be proven.

DBS can be dramatically useful in Parkinson’s disease. Whether DBS will be the Miracle Cure for PSP is something only time will tell.

At present, DBS for PSP is a research endeavour. You may choose to take part in a well-designed, research study of DBS in PSP.

Here is one such study at Harvard / Beth-Israel Deaconess Medical centre. [Study of Gait Analysis in Neurological disease]

Promising medication trials in PSP

Besides DBS, researchers are also studying medications for PSP.

These research trials are based on very complex science.

One medication (C2N-8E12) may remove the waste product called “Tau” from the brain. “Tau” is supposed to be the toxic agent responsible for producing PSP.

You can read more about research in medications & DBS for PSP by reading this paper by Dr. Moretti, a researcher from Italy. [Click here]

Moretti Advances in treatment of Atypical Parkinsonism
Click here for an excellent (but detailed) summary of future treatments for PSP.

PSP treatment without medications

“Treatment” doesn’t mean only medications.

The two most important complications of PSP are:

  1. Trouble swallowing, which can lead to “Aspiration.”
  2. Falling
Aspiration
In PSP patients, food may go into the windpipe (lungs) instead of the foodpipe (stomach). This is called Aspiration. It is absolutely critical to prevent aspiration.

Physiotherapy and balance training is useful to prevent falling. Swallowing therapy and education is helpful to avoid aspiration.

You can read more about preventing Falling and Aspiration in these two articles:

  1. Learn how to Prevent aspiration
  2. Learn how to Prevent Falling

A continually updated list of PSP research studies

If you or your loved one has PSP, you may consider participating in a research study.

In addition to talking to your neurologist, the website clinicaltrials.gov is a good starting point to finding such studies.

Please click on this link, it contains almost all studies being conducted in the US, and most studies being conducted in Europe. In my experience, coverage of studies being conducted in other countries is sometimes patchy.

Click here for the latest PSP trials on clinicaltrials.gov

Caution: This information is not a substitute for professional care. Do not change your medications/treatment without your doctor's permission.
Dr. Siddharth Kharkar

Dr. Siddharth Kharkar

Dr. Siddharth Kharkar has been recognized as one of the best neurologists in Mumbai by Outlook India magazine and India today Magazine. He is a board certified (American Board of Psychiatry & Neurology certified) Neurologist.

Dr. Siddharth Kharkar is a Epilepsy specialist in Mumbai & Parkinson's specialist in Mumbai, Maharashtra, India.

He has trained in the best institutions in India, US and UK including KEM hospital in Mumbai, Johns Hopkins University in Baltimore, University of California at San Francisco (UCSF), USA & Kings College in London.

Call 022-4897-1800

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  • Avatar Paras Prabhu ★★★★★ 6 months ago
    Out patient is epileptic from about 10 years and her seizure gotten worse during the past year with the frequency of about 3-4 times a week.So we consulted … More Dr. Kharkar. He tried a few medicines, and within 1.5-2 months now the patient is feeling very well now. There are no seizures for 14 days currently.Dr. tried to keep medicines as minimum as possible. He also tried to keep the cost of the treatment minimum.When some of the medicines started showing side-effects, he was quick to switch the medicines to the better options.Overall I think we are getting a best of the available treatments. We thank you very much Dr. Kharkar.
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    I consulted Dr Sidharth for my sister who has become very hyper and aggressive and we could not understand the issue. Keeping in mind she is someone with … More special needs Dr Sidharth was extremely understanding of the situation and did not put her through unnecessary investigation and avoided a very long stay at the hospital. He was infact more keen on her returning home to her natural environment. We highly appreciate Dr Sidharth for his effort and for looking into the matter with utmost care. It was a very difficult decision for my family to get my sister admitted but we are glad we did it under his care.Thankyou Doc.
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    my name is prashant purohit. I m become completely bed ridden from last 9 months and was unable to walk. I couldnt find out the cause even after visiting … More many doctors and many hospital in Ahmedabad nd jodhpur.started losing hope. A good friend of mine suggested to visit a neurologist. After searching a lot, I came to know about Dr. Siddharth Kharkar and took his appointment in Nanavati Hospital. He examined and said that he suffered from \u201cPKD(PAROXYSMAL KNESIGENIC DYSKNESIA\u201c. He assured us to reverse this in 5 days time. And indeed this happened. I started recovering miraculously. today I am fully well fit I m walking as normal . Many Many thanks to Dr. Siddharth Kharkhar sir for giving me a new life.
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16 thoughts on “Is there a Miracle Cure for PSP? [Rational PSP treatment & new research]”

  1. My mother has been diagnosed with Parkinson’s disease in Dec 2019 and then diagnosed with PSP in August 2021 as the symptoms increased as in looking downward, Chewing and swallowing problem, freezes body, falling, involuntarily eyes closing, loss of speech. The doctor prescribed Madopar, Amantrel Tab, Evion LC. We are continuing with her physiotherapy.
    My question is what else we can do for her? The progression in disease is getting faster. Also how we can support her emotionally and mentally?

    Reply
    • Caring for PSP can be emotionally difficult for both the patient and the caregiver.

      1) There are many support groups on Facebook for patients with PSP. These are filled with people who are very helpful and emphatic. I would strongly encourage you to join one of these groups:
      https://www.facebook.com/groups/ProgressiveSupranuclearPalsy/
      https://www.facebook.com/lifewithPSP/

      2) Physiotherapy including balance training, and swallow therapy are very important components of therapy. In addition, you should also discuss the timing of:
      – peg-tube
      – Tracheostomy tube
      – Home health aide and managed care with your physician/neurologist.

      3) Do not forget to take care of yourself during this time. Take some time off for yourself everyday, and if you feel the need do meet a counsellor for yourself as well.

      Reply
  2. Dear Dr kharkar
    Gone through your article on PSP. I am sure people around the world would

    beneficial very well written as that is. However, I would like to ask you for the benefit of all such and related patients the following points of great value to them:
    1. Whether or not senior citizen PSP/ PD patients as soon as they are diagnosed, get the pneumonia vaccination? Would that not be helpful in saving them from the complications should they get aspirational pneumonia later on during the course of the illness?
    2. Should all PSP/PD patients not do breathing exercises such as using a spirometer exerciser etc. regularly as soon as they are diagnosed with these disorders ? Would that not prevent them from swallowing problem?
    3. Both Syndopa plus (levodopa plus carbidopa) and amantidine hydrochoride not only cause dry mouth and bitter taste but also pain in the throat in some such patients. Should such patients discontinue these medicines or what should they do to avoid these undesirable side effects?
    4. Should such patients take medicines for sleep problems (insomnia) if they have any?
    I am sure you will answer all these four questions that can help such patients get some relief and hold hope. Thanks
    Sharwan

    Reply
    • 1. Whether or not senior citizen PSP/ PD patients as soon as they are diagnosed, get the pneumonia vaccination? Would that not be helpful in saving them from the complications should they get aspirational pneumonia later on during the course of the illness?

      In the US, all adults, regardless of age get the Influenza (Flu) vaccine. All elderly adults (above age 65) get the pneumococcus vaccine in addition. These are very good recommendations that prevent avoidable illnesses in that country. Whether the same should be done in other countries is for the government authorities to decide.

      These vaccinations prevent infection by organisms called the Influenza Virus and Pneumococcus bacteria. Aspiration pneumonia is not caused by influenza, and in most cases not caused by pneumococcus only either.

      Aspiration pneumonia is caused by bacteria present in the food that goes into the lungs. These bacteria are usually many and MIXED – including a combination of bacteria called anaerobes, Staphylococcus and in some cases some varieties of pneumococcus also.

      So, which these vaccines dont protect against Aspiration pneumonia, in most elderly people its still a good idea to take them – regardless of parkinson’s disease.

      Do check with your doctor before taking any medications/vaccinations.

      2. Should all PSP/PD patients not do breathing exercises such as using a spirometer exerciser etc. regularly as soon as they are diagnosed with these disorders ? Would that not prevent them from swallowing problem?
      These are two different things. One is the suction power of the lungs, or more accurately the muscles that move the lungs – e.g. the diaphragm and the muscles around the ribcage.
      When you swallow, the opening to the lungs should close and that to the stomach should open. This is done by the muscles in the throat. It is these muscles that need to be exercised – that is getting swallow therapy by a certified speech-swallow therapist is useful. In some cases, evaluation by an ENT doctor who can see these throat movements with a mirror or a scope can also be useful.

      3. Both Syndopa plus (levodopa plus carbidopa) and amantidine hydrochoride not only cause dry mouth and bitter taste but also pain in the throat in some such patients. Should such patients discontinue these medicines or what should they do to avoid these undesirable side effects?
      Amantadine can cause dry mouth because of its anticholinergic action. There is no exact solution to this problem but to drink enough water, and perhaps transition to a different medication if the dryness is intolerable.

      The instructions here may help as well: https://www.nhs.uk/conditions/dry-mouth/

      There are some preparations which try to keep the mouth wet, in my experience they dont seem to work well.

      4. Should such patients take medicines for sleep problems (insomnia) if they have any?
      The cause for insomnia should be found – Depression, obstructive sleep apnea, OFF-periods at night can all cause insomnia. It is much better to find the cause of Insomnia and treat the cause, rather than taking a sedating medication directly.

      I think this article will help you: https://drkharkar.com/rem-sleep-behavior-disorder-parkinsons/

      Reply
  3. Hi Sir My father diagnosed with PSP last 3 Year’s. We consulted with Neurologists and started the treatment problems with eye movements, falling and eating food Trouble swallowing started 20 days.Please sugest some treatment sir.

    Reply
  4. My father diagnosed with PSP last year. We consulted with Neurologists and started the treatment(medicines and few exercises). But there is not much improvement, he has difficulty in maintaining balance while standing up from sitting and lying down position and falls frequently. plss sugest some treatment.

    Reply
  5. Hi Sir,
    My mother has been diagnosed with psp since last 3 years. Doctor prescribed Syndopa tablet, her situation is getting worse. Is cell based therapy or botox treatment will help?

    Thanks,
    Ashwini

    Reply
    • For PSP:
      – The diagnosis needs to be firm / sure. A MRI with morphometric measurements (checking the actual volume of the midbrain) can be confirmatory.
      – Botox therapy can help the patient in opening his/her eyes. It is not very useful for other things.
      – Stem cell therapy is addressed in detail elsewhere in this guide. As of this date, stem cell therapy is a good research prospect and you can participate in a well-designed research trial for the same. However, it is not currently approved for routine treatment of PSP patients.

      Reply
  6. My mother has been diagnosed with psp almost 2 years back. She’s on a very rapid decline so any ready of hope is good. Any idea when a treatment will be available and if it’s a good idea to participate in clinical trials and would you be able to recommend any ongoing trials?

    Reply
    • It is difficult to say when a treatment will be available. At the present time, there are not many medications that are close to being approved and are dramatic cures. Yes, it is definitely a good idea to get involved in clinical trials. The https://www.clinicaltrials.gov/ website will help you find a clinical trial close to where you live.

      Best,
      Dr. Siddharth Kharkar

      Reply
  7. My father has been aspirating for the past year and has developed aspirational pneumonia. I think it is because of his inability to swallow. I have got two contradictory diagnoses from the doctors at NIMHANS and Narayana Hrudayalaya where one set believes it’s PSP and the latter believes it is Parkinson’s. He is in and out of ICU at the moment and I need to understand how can I best manage the aspirations. Could you please point me to someone who we can consult?

    Reply
    • Aspiration is common both in PSP and Parkinson’s disease. It definitely is more common in PSP, but just the presence of aspiration is not enough to make a diagnosis of PSP.

      There are two features that are more specific for PSP: inability to look down, and shrinkage of a part of the brain called the midbrain.

      Regarding the latter, rather than just estimating it visually, some radiology centres can actually measure the volume of the midbrain, and compare it mathematically to a nearby region of the brain called the pons. This is called the midbrain/pons ratio, and if it is disproportionately low, it is quite specific for PSP.

      Sometimes, the initial MRI may not show the shrinkage. Repeating the MRI after a year may help to confirm the diagnosis.

      Best,
      Dr. Siddharth Kharkar

      Reply
  8. Because of falls, loss of appetite, tremors, and other clinical symptoms, I was diagnosed with PSP. Then, a few months later, a DatScan revealed that I did not have PSP. What could explain the symptoms of not PSP??

    Reply
    • It would not be proper to comment on your case in particular. But if I may, I’ll make a few general comments:

      – All tests including the dat scan are fallible. A dat scan may be negative even in a case of Parkinsonism/psp.

      – So the clinical history and exam is what all doctors base their diagnosis on.

      – if the history and exam suggest an alternative etiology – such as thyroid problems, vitamin deficiencies etc… A full recovery may be possible.

      – I have an article on this website about the mimics of parkinsons/parkinsonism. I think you will find it interesting.

      – Please talk to your doctor in detail about your problems. If needed a second opinion is, of course, a good option and is well within your rights as a patient.

      Reply

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