Category Archives: PSP

Drugs to avoid or be cautious of in the elderly (2-page Canadian cheat-sheet)

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Group member Dorothy emailed me this link recently:

www.rxfiles.ca/rxfiles/uploads/documents/psyc-elderly.pdf

Psychotropic Drugs in the Elderly
Treatment Considerations
Sept 2011
The RxFiles Academic Detailing Program
Saskatoon City Hospital

It’s sort of like a two-page “cheat sheet” for medical professionals on:

  • what medications the elderly should avoid or be cautious of
  • suggested medications for depression, insomnia, pain, psychosis, agitation, anxiety, etc.
  • how to assess and treat what are known as BPSD (behavioral and psychological symptoms of dementia)

Throughout the cheat sheet, the acronym SE is used.  This refers to “side effects.”

One thing that is obviously missing — but it’s not part of this chart
— is what medications to avoid if dealing with a person with
Parkinson’s Disease or parkinsonism.  For example, some medications have anti-dopamine effects, and they shouldn’t be given to people to parkinsonism.  A less-sophisticated but more user-friendly list of medications to avoid with PD can be found here:

www.apdaparkinson.org/userfiles/files/Medications%20to%20be%20Avoided%207-11.pdf

If you find other things missing or items you would take issue with on the “cheat sheet,” please let me know!  This is the sort of document where more than one reviewer is needed as it’s densely-packed with details.

Robin

 

Three Stanford Studies Recruiting PDD, PSP, MSA, CBD or healthy controls

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Two researchers at Stanford’s Movement Disorders Center are recruiting participants for three research studies who have PDD (rather than DLB), PSP, MSA, or CBD, or are healthy controls.

Dr. Kathleen Poston mentioned both of her studies are the October 2012 atypical parkinsonism symposium during the MSA break-out session, so that may not be new info to those who attended her session.  (And I know several in our group – both those with MSA and their healthy caregivers – have participated.  Thank you!)

You do NOT have to be a Stanford patient or Stanford family to
participate.  Details of the three studies follow.

Robin

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LOOKING FOR THOSE PDD (PARKINSON’S DISEASE DEMENTIA) AND HEALTHY CONTROLS

Development of multimodal imaging biomarkers for cognitive dysfunction in Parkinson’s disease

Principal Investigator:  Kathleen Poston, MD, MS.  This study is
funded by the Michael J. Fox Foundation for Parkinson’s Research.

Contact Info:  Sophie YorkWilliams, (650) 774-8688

We are recruiting:
1: Any persons with a diagnosis of Parkinson’s disease with all levels of memory ability.
2. Any healthy persons between the age of 45-95, who do not have PD, memory problems, or any other neurological disorder.

Study participants will receive at no cost:  brain imaging (MRI), a memory evaluation, a clinical evaluation, and genetic testing.

The purpose of this study:  To better understand brain networks and biological markers associated with memory changes in Parkinson’s disease, and to find ways of detecting these changes before memory problems develop.

LOOKING FOR THOSE WITH MSA, PSP, OR CBD

Early Differential Diagnosis of Parkinsonism with Metabolic Imaging and Pattern Analysis

Principal Investigator:  Kathleen Poston, MD, MS.  This study is
funded by the NIH.

Contact Info:  Hadar Keren-Gille, (650) 724-4131

We are recruiting:
1: People with an established clinical diagnosis of PD, MSA, PSP, or CBD
2: Any person with a parkinsonian diagnosis within the last 2 years, who is not on any levodopa (sinemet) or dopamine agonists
(ropinirole/Requipe or pramipexole/Mirapex).  Rasagiline (Azilect) or selegiline are OK.
3. Any person with REM Sleep Behavior Disorder (RBD), but no other neurological diagnosis.

Study participants will receive at no cost:  brain imaging (MRI and PET), a memory evaluation, and a clinical evaluation.

The purpose of this study:  To develop imaging markers that will more accurately diagnose parkinsonian disorders, such as Parkinson’s disease, Multiple System Atrophy, Progressive Supranuclear Palsy, and Corticobasal Degeneration.

LOOKING FOR THOSE WITH MSA OR PSP

Fine, limb and axial motor control study of people with MSA and PSP

Principal Investigator:  Helen Bronte-Stewart, MD, MSE

Contact Info:  Lauren A. Shreve, (650) 855-4656

We are recruiting:
1.  People with diagnosed MSA-P or -C and PSP, who can stand
unassisted in the off medication state.
2.  Healthy age-matched (older) control subjects.

Purpose:  We plan to compare fine and large motor kinematics with those from people with PD.

 

Therapy Even if No Improvement – Big Change to Medicare Rules

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Back in October 2012, it was reported that a settlement had been proposed that would affect skilled nursing home stays as well as home health and home therapy services for those with Medicare.

This Monday, the New York Times reported that Congress also took action to allow exceptions to what Medicare pays for physical, occupational, and speech therapy.  Plus, the proposed settlement had been approved by the court; Medicare is now prohibited from denying patients coverage for “skilled nursing care, home health services or outpatient therapy because they had reached a ‘plateau,’ and their conditions were not improving.”

This will have an impact on Medicare beneficiaries who have PSP, CBD, MSA, and DLB diagnoses.

The Center for Medicare Advocacy (different from the Centers for Medicare & Medicaid Services), has a webpage devoted to “explaining how to challenge a denial of coverage that is based on the lack of improvement.”  See:

www.medicareadvocacy.org/take-action/self-help-packets-for-medicare-appeals/

And, the Center for Medicare Advocacy “advises beneficiaries to show a copy of the settlement — also available from the Web site — to your health care provider at your next physical therapy appointment if you are concerned about losing Medicare coverage.”

See a highlighted copy of the settlement:

www.medicareadvocacy.org/wp-content/uploads/2012/12/Settlement-Agreement-for-Web.pdf

Here’s a link to the NYT article:

newoldage.blogs.nytimes.com/2013/02/04/therapy-plateau-no-longer-ends-coverage

The New Old Age: Caring and Coping
Finances & Legalities 
Therapy Plateau No Longer Ends Coverage
New York Times
By Susan Jaffe
February 4, 2013, 7:49 am

Robin

Easy Trick to Distinguish PSP from PD

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Tim Rittman, a clinical research fellow in neurology in the UK, recently posted to The PSP Association’s blog about his recent paper on using cognitive testing to differentiate Parkinson’s Disease (PD) and progressive supranuclear palsy (PSP).  Here’s a link to his blog post:

www.pspassociation.org.uk/2013/01/easy-trick-to-distinguish-psp-from-parkinsons-disease/#more-6112

The full post is copied below.

Robin

——————–

Tim Rittman
Post to The PSP Association’s Blog

I’m pleased the JNNP have published my paper on cognitive testing in Parkinson’s disease (PD) and two rarer but important diseases that can be confused, Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD), though a little surprised no one had done the study before now. The headlines are:

  • a short test of verbal fluency distinguishes extremely well between Parkinson’s disease and Progressive Supranuclear Palsy
  • it’s not so useful for distinguishing Parkinson’s disease from Corticobasal Degeneration, or between Progressive Supranuclear Palsy and Corticobasal Degeneration
  • the ACE-R test changes over time in Parkinson’s and Corticobasal Degeneration, but not so much in Progressive Supranuclear Palsy

If you want more details, either read the paper or get in touch! Even though it’s not the main chunk of my thesis, I enjoyed writing this paper. It gets to the heart of a challenging clinical problem (and deals with the fun part of being a neurologist!), that of making the correct diagnosis in similar diseases. It uses relatively simple tools, in the Revised Addenbrooke’s Cognitive Examination and verbal fluency scores, so should apply to most clinic or hospital situations.

Parkinson’s can be a tough disease to deal with, but usually responds well to treatment for many years. Giving a diagnosis of PSP or CBD has much great implications for patients and relatives in terms of the lack or treatment response, shorter prognosis, and challenging cognitive and motor symptoms.

To those who know PSP and CBD well, there is nothing particularly surprising in our results, although the high significance levels and good performance of the tests will hopefully give some confidence in existing knowledge. My hope is this will raise awareness among those less familiar with the disorders, and enable earlier recognition of PSP and CBD. JNNP has a wide readership among clinicians, so I’m really pleased they’ve published it. I may be optimistic, but if anyone finds the paper useful because they’re struggling with differential diagnosis, then I’d love to hear from you!

Bad News about Both PSP/CBD Experimental Trials in 2012

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I wanted to be sure everyone saw the very bad news that came out in 2012:  the two experimental drug trials in PSP — Davunetide and Nypta.

Hopefully the search will continue for a medication that can slow the progression of PSP and CBD — both tauopathies.  And hopefully cures can eventually be found for these diseases.

Adam Boxer, MD, the neurologist at UCSF’s Memory & Aging Clinic and the principal investigator of the Davunetide trial, has spoken forcefully in the past about pharmaceutical companies using PSP — rather than Alzheimer’s Disease — as the testing ground for tau-modifying agents.  I hope the failure of Davunetide doesn’t mean that Dr. Boxer’s theory has been disproven.

A small number of people in our local support group participated in the Davunetide trial; UCSF was the lead institution.  (A total of 313 people participated worldwide.)  And a couple of our group members participated in the pilot trial of Davunetide done at UCSF in PSP, CBD, and FTD.  I don’t believe anyone in our group participated in the Nypta trial.  (UCLA was the nearest institution participating.)  I would like to thank those who participated.  Without their sacrifice, we would not have known whether this medication was effective or not.

Anecdotal evidence in at least one local participant suggested
Davunetide was effective.  I guess that was placebo effect?

The manufacturer of Davunetide, Allon Therapeutics, had a phone call with investors the day the results were announced in mid-December 2012. Janet Edmunson, the chair of CurePSP, listened to a recording of the call.  One point that she passed on — that was not in the press release — was that perhaps not enough of the medication was given. Would a higher dose work?  Allon said the results are being further analyzed to “determine if there is any evidence of an effect or explanation for the absence of an effect.”

Apparently, the bad news about the worldwide Nypta trial came out in early 2012.  UCLA was the nearest participating medical center.  I don’t think Dr. Boxer mentioned this failed trial at the October symposium.  Noscira, the manufacturer of Nypta (tideglusib), said that the experimental medication failed in PSP but a trial in Alzheimer’s Disease would continue in 2012.  No results of that have been announced yet.

This seems to be the path of most medical research — some steps
forward and lots of steps back (or sideways).  We’ll just have to keep hoping for a breakthrough as the researchers continue to plod away.

If you’d like to read the details on the bad news, check out:

Allon Therapeutics press release regarding Davunetide
www.allontherapeutics.com/2012/12/allon-announces-psp-clinical-trial-results/
Excerpt:  “The study had co-primary outcome measures: the Progressive Supranuclear Palsy Rating Scale (PSPRS), and the Schwab and England Activities of Daily Living (SEADL).  Data analysis failed to detect an effect on either the PSPRS or the SEADL.”

Noscira CEO letter regarding Nypta (tideglusib)
www.noscira.com/noscira.cfm?idIdioma=2&idArticulo=97

Robin