NIH/NINDS Creatine Study Press Release

If you are interested in research going on in the Parkinson’s world that might affect the atypical parkinsonism disorders, this post may be of value to you.

The National Institute of Neurological Disorders and Stroke (NINDS) of the National Institutes of Health (NIH) has organized a nationwide effort called NET-PD (Neuroprotection Exploratory Trials in Parkinson’s Disease), a randomized, double-blind futility trial, to study compounds that may slow the clinical decline of Parkinson’s disease.  Creatine and the antibiotic minocycline were identified as agents worthy of preliminary study.

In a press release on the study that was released in conjunction with the World Parkinson Congress in Feb ’06, the lead investigator said that a “clinical trial with 200 Parkinson’s disease patients has shown that creatine and minocycline may warrant further consideration for study in a large trial.”

Here’s a link to the press release titled
“Preliminary Results Shows Creatine and Minocycline May Warrant Further Study in Parkinson’s Disease”:

The bottom line is this:

“The trial investigators note that while encouraging, this pilot study does not have sufficient numbers of patients or duration of follow-up to recommend that patients with Parkinson’s take either agent.  In fact, the investigators caution Parkinson’s patients and their physicians not to interpret the results of this study as suggesting such a course of treatment.  Further study is required before the researchers can conclude whether creatine or minocycline is in fact helpful, harmful or has no significant impact.”


Arctic ground squirrel clears out tau during hibernation

The PSP Family Conference, put on by the Society for PSP (Progressive Supranuclear Palsy), was held last Saturday near SFO.

As I had attended the ’04 PSP Family Conference and had heard Dr. James Tetrud speak before, I had different expectations of what he would say at this year’s conference.  He is the neurologist at The Parkinson’s Institute who probably knows the most about Atypical Parkinsonism disorders, such as PSP, LBD, MSA, and CBGD.  I compared his slides from ’06 to ’04, and was disappointed that there was nothing new to report in the area of research with one exception:  at last Saturday’s conference he mentioned the Arctic ground squirrel.

During a 7-month hibernation, the squirrel’s brain loses many of the nerve-cell connections that govern how it operates.  Tau protein accumulates in the brain — just like with Alzheimer’s Disease and PSP.  (I’m sorry to say that I don’t know the pathology of the other Atypical Parkinsonism diseases.)  Within 2 to 3 hours of emerging from hibernation, there is a wave of neuronal growth and tau is eliminated.  Thus, there appears to be a mechanism to clear tau.

Dr. Tetrud referred to a recent Economist magazine article on the subject.  I consider myself to have excellent follow-through and research skills but I was outdone on both of these fronts by Sam, a support group member who also attended the Saturday conference.  He found the article in the Feb. 4th issue (page 72).  Here’s a link to the article:

Sleeping on it
Similarities between dementia and hibernation suggest a treatment
The Economist
Feb 2nd 2006

It’s interesting reading!  Let’s hope something comes of it…


Suggested gadgets (utensils and bed canes)

At the last support group meeting, some of us were talking about two gadgets in particular — weighted utensils and bed canes.  I said I’d follow up with a couple of folks about these gadgets.  Rather than just sending the follow-up email to those couple of people, I thought I’d include everyone.


There was a disability conference in SJ last year.  There was a workshop devoted entirely to gadgets.  The presenter passed around some weighted utensils and explained that these were useful to those with Parkinson’s.  I’m sure many of you have seen the utensils with the large, black Oxo handles (ergonomic, soft, big grip).  (The assisted living center where my Dad lives ordered a set at my request.  They paid $20/each.)  The presenter made of point of saying that while those were good, the weighted ones were better.  Somehow the weight sends a signal to the brain that there’s something for the hand to grip.  The presenter works for (phone 800/377-8033).  I ordered the weighted soup spoon ($7.95, item #A17040 04) and weighted fork ($6.95, item #A17040 01) for my Dad.  The weighted utensils do improve my Dad’s grip and he’s better able to eat on his own.  If I had to do it again I’d probably get only the spoon.  Note that when someone else is holding the utensil and helping with the feeding, you will want to use a regular spoon.  The weighted soup spoon is purposely deeper than other soup spoons; we’ve found that the regular spoon works better if someone else is doing the feeding.  One other feature of these weighted utensils that we don’t really value but others might is that they are bendable.  This company distributes all sorts of accessibility and convenience products.  Another one I’ve purchased from them is a plastic scoop dish ($4.95, item #A17023); this is handy to have.


My dad has two — a regular one and a travel one.  The regular one is called a BedCane from Standers, Inc. ( – company name ends in S but the web address doesn’t).  The handle is wide, very sturdy, and somewhat cushioned.  The handle attaches to a solid wood base, which is tied to the mattress.  The whole thing is very sturdy.  I think we paid $60 for this.  The travel bed cane is called TravelHandles from Bed Handles (  They cost $110 for a box of two handles.  Another support group member and I recently split the cost and each got a handle.  For us, one handle is sufficient.  It worked great in Acapulco with my Dad last week!  The only caution I would have is that the handle is a bit large; it would only fit in our large suitcase.  We also have the non-travel version called the Original Bedside Assistant; I would say the travel version feels just as sturdy although the travel handle is made from aluminum.

If any of you have a gadget you’d like to recommend, send me an email and I’ll distribute it to the wider group.


Points from an expert physical therapist – on PD and parkinsonism

I attended Marilyn Basham’s presentation this afternoon on “Caregiving Made Easy for Parkinson’s Individuals.”  She’s the physical therapist (PT) at The Parkinson’s Institute (TPI).  I picked up a few tidbits at the presentation that I thought I’d pass along.  As the presentation was focused on Parkinson’s Disease (PD), not everything applied to the situations we are dealing with but there were still many interesting points that apply.

Here are the points I found interesting….  (with some of my comments in parantheses)

People with PD and Parkinsonism MUST use a walker or wheelchair to make them as safe as possible.  It’s very important to have mobility and postural strategies worked out with a physical therapist and/or neurologist.

PD is evident when 60-80% of the cells in the basal ganglia have died.

The “automatic motor programs” we have are stored in the basal ganglia.  One of these “programs” is what tells us that to stand up from a low chair, we need to scoot to the edge, put our feet underneath us, lean forward, and push up.  PD folks must either receive cues as to the steps of these programs, or they must practice it so many times that doing it becomes somewhat automatic again.

To overcome freezing (called “gait initiation failure”), you can put masking tape on the floor to provide a visual cue.  Put the tape at thresholds or where ever the person often has the freezing problem.  (Of course this won’t work for those with PSP who have downward gaze palsy.)

A suggested verbal cue to give someone who wants to speak is:  “Swallow.”  (pause to let the person swallow)  “Take a deep breath in and then, at the top of your breath tell me what you want.”  (pause to let this happen)  Swallowing is important because fluid accumulates in the back of the throat and those with PD are not aware of it.  You can give them gum to initiate a swallow response.

Before someone with MSA (or PD with blood pressure fluctuations) stands up, give them a glass of water with salt in it or Gatoraid.  This will increase the blood pressure.  Obviously the person’s diet and blood pressure medication needs to be taken into account before following this suggestion.

We must give time for those with these diseases to process information!  Be patient!  Give long pauses.  Don’t overload them.  Don’t give them more than one complex task at a time.  Walking is a complex task.

(Some of you know that my father and I communicate by our holding up fingers to designate an answer.  Example, “do you want 1 for coffee, 2 for tea, or 3 for nothing,” and I hold up 1, 2, and 3 fingers.  He answers by holding up fingers.  Long after the fingers come up, he may try to verbalize the answer.)  I asked Marilyn why my father could hold up fingers faster than he could verbalize a response.  Marilyn said she didn’t know why but pointed out that parents of small children teach their children sign language long before the children can verbalize.

Dementia is rare in PD.  (It’s definitely common in the Atypical Parkinsonism diseases.)  PD folks may lose their keys but they still remember what keys are and how to use them.  (I thought that was a good story for remembering what dementia is.  My dad, for example, cannot remember how to use an ATM card.  I see the dementia very clearly.)

A patch for Sinemet is in the works.  (Some of your loved ones take Sinemet.)

The head of TPI thinks that PD is the most curable of all the neurodegenerative diseases.  (Let’s hope he’s right because hopefully those diseases related to PD can be cured quickly too.)


Theoretical benefit of DBS with PSP and MSA

For those with not enough reading materials(!), is an interesting website.  In the January 2006 News Roundup section of the website, there’s an article about how deep brain stimulation in specific areas could help those with multiple system atrophy or progressive supranuclear palsy.

A short blurb is copied below.



Two studies in the November 28, 2005, NeuroReport demonstrated that the pedunculopontine nucleus can be targeted safely and effectively with deep brain stimulation without major surgical risks in patients with Parkinson’s disease. Low frequency (20 to 25 Hz) stimulation of the pedunculopontine nucleus improves postural stability and gait disturbance, including “on-medication” freezing. Furthermore, combined stimulation of the subthalamic nucleus and the pedunculopontine nucleus appears to be more valuable than stimulation of the pedunculopontine nucleus alone. “In theory, even patients with multiple system atrophy or progressive supranuclear palsy could benefit [from this treatment]­in fact, any patient with intractable locomotive and postural akinesia [could benefit],” reported the investigators.