My inaugural post! Here goes.
The current issue of Movement Disorders has two papers on a late Phase II study of the GST-3β inhibitor tideglusib in PSP. The first, by Eduardo Tolosa et al, reports the failure of the drug to slow progression as measured by the PSP Rating Scale and a number of other clinical scales. But the second, by Günter Höglinger et al, analyzes a subgroup of patients from the same study who had MRIs before and after treatment. They found 58% less progression of cerebral atrophy in the active drug group relative to placebo. Most of the effect occurred in the parietal and occipital lobes, the neocortical areas least affected in PSP.
Full (really full) disclosure: I was a one of the co-I’s in the study, though not one of the sites doing the MRIs (they were the European sites); the primary outcome measure was a scale that I devised and published; I consulted for the industry sponsor in the study design; Günter Höglinger is my very good friend (as is Eduardo, but his paper isn’t the controversial one); and I have an editorial in the same issue of Movement Disorders trying to interpret the findings. Is my bias reduced by my inability to figure out in which direction it points?
Anyhow, I’ve heard various reasons why this couldn’t possibly be a real neuroprotective effect, and none of them are all that convincing. But I don’t want to bias you. Discuss.
PSP Blog 
I lost my husband on 16th nov diagnosed PSP wondering why he lost a lot of weight at the end
Please accept my sympathies.
Weight loss often occurs in people with neurodegenerative diseases for unclear reasons. Or, it simply could have been the result of inability to swallow food, a universal problem in advanced PSP. Even a slight reduction in daily caloric intake, over a few weeks, will result in weight loss. There are many other possibilities not directly caused by the PSP.
We have been married for 58 years next week. My husband is 78 and I am 77. My husband is 6 years into first, a TIA, then now diagnosed as PSP. First diagnosed Parkinson, which I refused to believe, as my family has that. (My mother, brother, sister, niece, uncle have or had it before their death.) Three years ago he was diagnosed PSP. I am caregiver, now with help from son who moved in with us. (He works full time.) We can check off every symptom, but choking and death from pneumonia. I am almost at wits end dealing with this progression. We look like a nursing facility, which I guess we are, only at home where we want to stay. Is there help or hope available? Social Security is our income and our savings are dwindling rapidly.
You have very vividly described one of the main reasons CurePSP was founded — to provide advice, support and hope for people with PSP and their families/caregivers. Contact CurePSP at http://www.curepsp.org or 1-800-457-4777.
My husband had a hip replacement in 2010 & was never the same after.( 70 yrs ) He then was diagnosed with Parkinson. He fell so many times that I just felt he did not have it. His personality was changing.Then, for the 1st time he saw a Parkinson Neurologist & he was then diagnosed with PSP.This was 2014. I had respite but that didn’t help me. I was totally burned out & had to resort to placing Roger in a LTF. This was the most difficult decision I’ve ever made. The facility ( St. Gabriel’s Chelmsford Ont. Canada ) has been great as each one is attempting to learn what PSP is & how to treat him. I believe Roger had PSP before the operation as he had several falls, getting aggressive etc. I am now feeding him at supper. His drinks are thickened & food is purified. They & I definitely require much more help as we are stumbling in a dark space. Anything you can do for all of us struggling with PSP would help immensely!! Roger is now 75.
I can’t give specific medical advice on this blog, especially as your comment doesn’t have enough information to go on. But CurePSP is set up to field this sort of question, providing information and support. They can’t give medical advice, either, but they may be able to refer you to a movement disorders center nearby if the neurologist who diagnosed your husband’s PSP isn’t available or accessible. CurePSP is at http://www.curepsp.org or 1-800-457-4777.
My mom has psp diagnosed 5 years ago .., she is 59 . She can walk with assistance and talks but with difficulty. She is on amantadine bromocriptine and amytriptillyne in additio to physical and speech therapies … what else we can do for her?
Is any ways we can help to this organization PSP to find cure or more insight of what is going on?
Thanks
Carla
Dr Golbe, I have been diagnosed as having PSP by Neurologist at the University of Arkansas for Medical Science and The University of Alabama at Birmingham. I have attended the research studies that involve the use of TPI 287 and the current BMS study. I read with interest your information regarding well water. My husband and I moved to Hot Springs, Arkansas in 1993 and lived in a home on Lake Hamilton for approximately 12 years. During this time we drank and used well Water. This water was treated using filters. Well water may be an excellent choice to investigate the causes of PSP. Donna Anderson
Thanks for that piece of information. In Dr. Litvan’s recently published study of risk factors for PSP, the only thing that differed between the participants with PSP and those without PSP was well water use. But of course, most people who use well water never develop PSP, so there has to be another factor at work that wasn’t included in that survey, such as a genetic predisposition or exposure to a second toxin, or a specific toxin that’s in some well water sources but not others.