What you need to know if you are new to PSP - PSP Association

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What you need to know if you are new to PSP


Many have found out that it takes seeing the right doctor before you learn that you have PSP. It took 3 years for my wife who was seeing a Neurologist before she was diagnosed with PSP.

The reasons are 2 fold. First many doctors don't keep up to date and they haven't seen this disease before, and then there is the issue of what part of the brain was impacted first by Tau (the main cause of PSP). Then add the amount of Tau into which area of the brain the disease started in will cause the patient to display symptoms differently. If I showed you 10 people that have PSP and asked you to tell me what they have in common, you would have a difficult time of it. For additional reading you might want to read: The Phases/Stages of PSP. You can find it at: supportpsp.com/Phases.html For those not familiar with supportpsp.com it's a website put up by my local PSP support group. The site never asks for money, and since I'm the site manger, I can tell you that the only thing you will find at this site is information about PSP. For now let's get back to why PSP is so hard to diagnose.

Before you get too upset that the doctor your loved one saw was clueless about PSP, factor in that PSP is a rare disease effecting 6 in 100,000 people. What that means is many doctors will never see a patient with PSP, and unless the doctor is willing to read the medical journals that are published every month, he or she will never learn that PSP is out there.

The sad thing is time is not the friend of those with PSP. PSP stands for Progressive Supranuclear Palsy, and as the first word in PSP is Progressive - the disease is very progressive in that cells of the brain are quickly dying. The average life span for someone with this disease is between 7 and 10 years.

I'm known for saying today is your loved one's best day, as with each passing day more brain cells are compromised. To a degree, once the cells die, they are gone, yet my wife's doctor will debate this fact based on what I has learned since prescribing a drug to help my wife with PSP.

Some on this forum have criticized me for suggesting a drug that isn't a cure, but will slow down the progression of the disease down to a snails pace. The comments are that there are no studies of the drug being used on PSP patients. I need to say that these doubters are almost correct. The studies they want will most likely never happen due to the low numbers of PSP patient, and most studies want patients that have had the disease for less than 5 years. With most patients being missed diagnosed for many years together with most patients not knowing they have a terminal illness until things get bad, the chances of a study as my doubters suggest is close to nil; as the numbers are not there.

I even posted that I talked my wife's Neurologist, a Dr. Samanta into talking with any doctor who has a patient with PSP, to share his finding where is had prescribe a drug that isn't a cure to a number of his patients, but will extend the life of your loved one. To date only a hand full have taking advantage of this offer. Dr. Samanta's phone number is (602) 277-2245. Here is a doctor willing to talk with any doctor who calls him, and not asking for anything for his time. Yet I have read postings questioning what is the best thing to do to help love ones.

Due to the small numbers of those with PSP, and then add that those affected with PSP as scatted all over the globe, the chances of getting a study where one can get 20 to 40 patients with PSP in one place is a joke.

A good number of you follow my posting as I try to provide just good information for those with PSP. I understand the need to share one's feeling, and I do that at my local support group. It just happens that a high number of PSP patients can be found in retirement areas, and Phoenix, Arizona is such a place; we average 10 per year at our support group.

As a caregiver for my wife who has PSP, I understand frustration. I understand anger, but what I don't understand is why many of you haven't insisted that your doctor take the time to confer with a world renown Movement Specialist Neurologist who is willing to talk your doctor into prescribing a drug that will keep your loved one alive. I need to warn you that the drug is not covered by insurance and it's not cheap (around $700 for 28 capsules). On the website there is an email address of where I get my wife's drug from. Since the drug will be coming from outside the USA, you will require a prescription so that US Customs will allow the delivery. I'm not in the drug business, but I can say that the drug does work. My wife is in her 16th year having PSP. My wife's doctor, Dr. Samanta told me that statistically my wife should have passed by now. My wife isn't the only one that this drug has helped. It doesn't cost anything to be informed!


2 Replies

Thank you!

Perhaps the lack of calls is because of the high cost of the drug.

Margarita, Los Angeles, CA, USA

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