Transcranial magnetic stimulation for PSP and CBD

There seems to be increased interest around the world in TMS – transcranial magnetic stimulation.

CurePSP, the new name for the Society for PSP, recently announced that it is funding a small study of TMS in 10 PSPers and ten CBDers at UCLA. Here’s info on the study being funded — first a non-technical summary and then a technical abstract: … ebsite.pdf –> see pages 13 and 14

CurePSP Magazine
Fall 2008

Cure PSP Awards Two New Grants in Spring 2008

Noninvasive Cortical Stimulation for Motor and Non-motor Features of PSP and CBD
Allan D. Wu, MD — University of California, Los Angeles

Non-Technical Abstract
Drug therapy of atypical parkinsonism is generally considered either ineffective or minimal. Therefore, there is an urgent need to find alternative therapies to treat atypical parkinsonian disorders. Repetitive transcranial magnetic stimulation (rTMS) is a noninvasive tool that modulates cortical excitability with minimal discomfort and holds therapeutic promise in treating neurological and psychiatric disorders.

The basal ganglia-thalamocortical circuits that are affected in PSP and CBD are likely structurally and functionally segregated. The ‘motor’ circuit is implicated in classic motor symptoms such as dystonia and parkinsonian slowness and stiffness; a ‘prefrontal’ circuit is implicated in working memory and mood regulation and may be linked with non-motor symptoms such as depression and apathy. In this proposal, we characterize motor and prefrontal network dysfunction in PSP and CBD patients, and propose that high-frequency rTMS directed over separate motor and prefrontal cortical targets of each network may show specific and selective beneficial effective on motor vs. cognitive function in PSP/CBD patients. Quantitative motor outcome measures include the Purdue pegboard, timed walking and timed tapping tasks. Quantitative cognitive outcomes measures comprise a novel 2-back working memory (WM) task and its emotional modulation as assessed with pictures of faces showing differential emotions.

If successful, this pilot study will provide proof of principle data to suggest potential benefits for rTMS in PSP/CBD patients, and provide sufficient data and experience to support future PSP/CBD studies that include the use of rTMS to investigate the pathophysiology of motor and non-motor features of PSP and CBD patients.

Structured Technical Abstract
Background: Drug therapy of atypical parkinsonism is generally ineffective or minimal, and novel therapy approaches for atypical parkinsonian disorders are needed. Repetitive transcranial magnetic stimulation (rTMS) is a noninvasive tool that modulates cortical excitability and holds promise in treating neurological/psychiatric disorders. The ‘motor’ basal ganglia-cortical circuit is implicated in parkinsonian akinesia and hypokinesia; a ‘prefrontal’ circuit is implicated in working memory (WM) and mood regulation, possibly linked to depression and apathy.

Hypothesis: Motor deficits in PSP/CBD are associated with a dysfunctional motor network; deficits in WM and its emotional regulation in PSP/CBD are associated with a dysfunctional prefrontal network. We hypothesize that high-frequency rTMS over cortical targets will selectively and specifically improve tasks and symptoms relevant to that target.

Aims: To contrast motor, WM, and emotional regulation between PSP/CBD patients and age-matched controls. To determine selective and specific beneficial rTMS effects over motor (M1) and dorsolateral prefrontal (DLPFC) cortex on motor, WM and its emotional regulation in PSP/CBD.

Design: Ten individuals with PSP, 10 with CBD, and 10 age-matched controls will participate in a within-subject cross-sectional design. Motor outcome measures include the Purdue pegboard, a walking test, and a tapping test. Cognitive outcome measures comprise a 2-back task and its emotional modulation assessed with pictures of affective faces. Subjects will receive at least two 5 Hz rTMS visits that will be randomized to two site conditions (left DLPFC vs. M1) across subjects with two within-session task conditions (motor vs. cognitive).

Relevance: If successful, we will demonstrate a double-dissociation and causal functional significance between rTMS modulation of M1 in motor tasks and DLPFC in WM and its emotional modulation in PSP/CBD vs. controls. Sufficient data and experience for future PSP/CBD intervention studies will help identify candidate TMS parameters that are optimal for given symptoms.

Abbreviations: progressive supranuclear palsy (PSP), corticobasal (ganglionic) degeneration (CBD), repetitive transcranial magnetic stimulation (rTMS), primary motor area (M1), dorsolateral prefrontal cortex (DLPFC), working memory (WM).

DBS in PSP – Study in Toronto

Dr. Melanie Brandabur at The Parkinson’s Institute told me recently that only 7-8% of those diagnosed with parkinsonism are good candidates for DBS (deep brain stimulation). The other 92% do not respond well to levodopa, have something else medically going on, or have atypical parkinsonism.

Despite that, there continues to be huge interest in DBS for those with Parkinson’s Disease. And now, CurePSP announced that it is funding a small study of DBS in six PSPers at Toronto Western Hospital. Patients will be followed for up to one year after surgery. The hope is that walking and balance will be improved through this type of brain surgery.

If memory serves (which it doesn’t always), DBS in PD is bilateral (both right and left) and focused on the sub-thalamic nucleus (STN). In the study below, DBS will be unilateral (one side of the brain only) and will be focused on the pedunculopontine nucleus (PPN).

(Note that there was a research report of one South Carolina patient with a clinical DX of PSP-P who received STN DBS. That patient did improve, according to the research published in 9/07. PubMed ID#: 17825599)

Here’s info on the study being funded — first a non-technical summary and then a technical abstract: … ebsite.pdf –> see pages 12 and 13

CurePSP Magazine
Fall 2008

Cure PSP Awards Two New Grants in Spring 2008

Unilateral Pedunculopontine Deep Brain Stimulation in PSP
Elena Moro, MD, PhD — Movement Disorders Center, Toronto Western Hospital

Lay Abstract
Deep brain stimulation (DBS) involves delivering electricity to specific brain regions through surgically implanted electrodes. There is recent evidence suggesting that DBS in a new brain surgical target, the pedunculopontine nucleus (PPN), may improve walking and postural problems in patients with Parkinson’s disease. As walking and balance are major struggle in progressive supranuclear palsy (PSP), we have designed a study aimed at investigating safety and efficacy of PPN DBS in patients with PSP. Six PSP patients will have unilateral PPN DBS surgery. Motor and non-motor symptoms will be evaluated before and after surgery up to 1 year. A specific study of walking and balance will also be conducted to assess potential improvement from PPN DBS. Beneficial effects obtained with PPN DBS in the treatment of walking and balance disturbances in PSP will likely improve the quality of life in these patients.

Structured Technical Abstract
Background: Gait impairment and postural instability are disabling motor features of progressive supranuclear palsy (PSP). In Parkinson’s disease (PD), deep brain stimulation (DBS) of the pedunculopontine nucleus (PPN) is currently investigated as a new surgical therapy to address axial signs (gait and balance).

Objectives and Hypotheses: To investigate whether unilateral PPN-DBS is safe and effective in PSP patients. We hypothesize that PPN-DBS will improve gait, postural instability and quality of life, without worsening other motor signs and condition. PPNDBS will possibly increase activation of the frontal cortex during PET scans.

Specific Aims: In Aim 1 we will study the effects of PPN-DBS using clinical scales, such as the PSP Rating Scale (PSPRS), the Unified Parkinson’s Disease Rating Scale (UPDRS) and the PSP Quality of Life scale. In Aim 2 we will analyze the effects of PPNDBS in gait initiation, spatiotemporal characteristics of gait and postural sway. In Aim 3 cerebral blood flow (rCBF) changes in cortical and subcortical regions will be studied with and without PPN-DBS using PET imaging.

Study Design: Six PSP patients with prominent axial motor signs (gait and balance impairment) will be enrolled. Patients will be assessed before and after surgery (at 3, 6 and 12 months) using the PSPRS, the UPDRS and the PSP QoL questionnaire. Assessments will be performed with and without dopaminergic medications and with and without PPN-DBS. Neuropsychological and psychiatric assessments will be performed preoperatively and at 6-month follow-up. Patients will also have gait analysis and posturography study before and after surgery (with and without stimulation). All patients will have unilateral PPN-DBS surgery using MRI and intraoperative microrecording for targeting. Patients will also undergo rCBF PET scan imaging with and without stimulation.

PSP Relevance: PPN-DBS could be an effective surgical treatment and improve gait, postural disturbances and quality of life in PSP patients.

Tau aggregation, 12/08 research (Japan)

Here’s the most interesting part of this new abstract on research into tau aggregation: “It is believed that aberrant modifications of tau, including phosphorylation, truncation, and conformational changes, induce filamentous aggregation. However, the mechanism underlying the conversion of tau protein from a soluble state to one of insoluble aggregates still remains elusive. ”

Current Alzheimer Research. 2008 Dec;5(6):591-8.

Tau oligomerization: a role for tau aggregation intermediates linked to neurodegeneration.

Sahara N, Maeda S, Takashima A.
Laboratory for Alzheimer’s Disease, RIKEN Brain Science Institute, Wako-shi, Saitama, Japan.

Intracellular accumulation of filamentous tau proteins is a defining feature of neurodegenerative diseases, including Alzheimer’s disease, progressive supranuclear palsy, corticobasal degeneration, Pick’s disease, and frontotemporal dementia with Parkinsonism linked to chromosome 17, all known collectively as tauopathies. Tau protein is a member of microtubule (MT)-associated proteins. Tau is a highly soluble and natively unfolded protein dominated by a random coil structure in solution. It is believed that aberrant modifications of tau, including phosphorylation, truncation, and conformational changes, induce filamentous aggregation. However, the mechanism underlying the conversion of tau protein from a soluble state to one of insoluble aggregates still remains elusive. The importance of tau aggregation intermediates (e.g. tau dimer, tau multimer, and granular tau oligomer) in disease pathogenesis was suggested by recent studies. Here, we review the latest developments in tracking the structural changes of tau protein and discuss the utility improving our understanding of tau aggregation pathway leading to human tauopathies.

PubMed ID#: 19075586 (see for abstract only)

POLST, DNR, Advance Health Care Directive, etc.

A few of us braved the rain Sunday night to attend the support group meeting.  I thought I would pass on one of the short discussions some of us had, and give you some related links to forms and info available online.

Cheri said that several people told her she could get a DNR (do not resuscitate) form from her doctor.  Well, she asked two doctors and neither had such a form.  She said that she had been advised to get such a form for her husband and sign it because if you don’t have such a form emergency medical personnel can go down a path the patient and family don’t want to go down.  However, Cheri pointed out that even if you have a signed DNR, the healthcare POA (power of attorney) can always say “we want resuscitation efforts to be made.”  Having a signed DNR gives the healthcare POA some flexibility.  Not having a signed DNR puts all the responsibility on the POA and gives him/her no flexibility. (I hope I’ve adequately described the point.)

Ted and I talked about our preference for the POLST form to a simple DNR form.  POLST stands for Physician Orders for Life-Sustaining Treatment.  It is signed by an MD, and serves as an MD’s instructions for what sorts of treatment anyone has determined he/she wants to have.  Paramedics, RNs, and MDs will accept and take instructions from the POLST.*  The POLST goes through a few more scenarios than just the person-is-not-breathing-and-has-no-pulse scenario.  For example, it asks what level of treatment should a person have — full treatment, limited treatment, or comfort measures only.  It asks if antibiotics are to be included in comfort measures.  It asks if intubation is to be included with full treatment.  It does NOT have as many scenarios, however, as “Five Wishes.”  And, in contrast with “Five Wishes,” the POLST is signed by an MD so these are “doctors’ orders.”

You can find general info on POLST at; this is a national effort that started at Oregon Health & Science University.  The POLST has recently become usable in California. State-licensed facilities are now being required to have a POLST form on all residents.  [Editor’s note:  you can now find California’s form at]

The POLST is a great form of anyone with a neurodegenerative condition or terminal illness to have completed and signed by his/her MD.

For the non-neurodegenerated, there’s the Advance Health Care Directive.  In our state, the California Medical Association has an Advance Health Care Directive Kit.  The cost is $5.  I have a few more free copies left; let me know at the next support group meeting if you want to get a copy from me.

This question-and-answer from the California Medical Association website may be of interest:

#18 Q:  I have reached a point in my life that I don’t want the paramedics to give me CPR. Will this Advance Health Care Directive keep this from happening?

#18 A:  If the paramedics are made aware of your Advance Health Care Directive before they start resuscitative efforts, and the Advance Health Care Directive clearly instructs them not to start these efforts, your wishes should be respected. You may also want to complete the “Prehospital Do Not Resuscitate (DNR)” form and obtain a “Do Not Resuscitate– EMS” medallion approved by California’s Emergency Medical Services Authority. You may order copies of the DNR form (which includes instructions on ordering the medallion) from CMA publications.

If someone signs a DNR form, it means that they do not want CPR used.  The DNR form for use in California can be ordered from the California Medical Association.  The cost is $2.  The CMA has a two-page brochure on the effectiveness and risks of CPR.

As for the Five Wishes document….  As far back as 2005, one of our founding group members, Storme, discusses it at most support group meetings she attends.  She has completed the form herself, and worked with her mother to complete the form.  Hearing Storme, many other group members have completed the form, including me. More recently, I heard Dr. Melanie Brandabur, a neurologist at The Parkinson’s Institute in Sunnyvale, recommend it.

Five Wishes is useful to fill out, and review with your healthcare POA.  This presents many scenarios, describing in detail things you may and may not want.  It addresses your medical, personal, emotional and spiritual wishes.  It is an invaluable resource for your healthcare POA, if you are unable to communicate your wishes.  The cost is $5.

Beneath my name, I’ve provided all the links you’ll need.  Here’s where you can get general info, find the POLST form for CA, learn about Five Wishes, order the CMA AHCD Kit, order the DNR form, and all the stuff described above.

Happy planning!

* Paramedics and RNs cannot take instructions based on a Living Will and they may not take instructions from any other Advance Directive you may have.  In the absence of a DNR or POLST, paramedics may be required to perform CPR if they have no MD’s orders to the contrary.



Patients and Families FAQ on POLST:

POLST form for CA:
[Editor’s note:  the form is now at]

Five Wishes from Aging with Dignity:  (cost is $5)

Info on the CMA Advance Health Care Directive Kit:

View a “Sample” Copy of the CMA AHCD Kit:  (unfortunately you can’t print a usable copy)

Order the CMA AHCD Kit:  (cost is $5)

Order the Pre-Hospital Do Not Resuscitate (DNR) form:  (cost is $2)

View the CMA’s brochure on CPR:

Family Caregiver Alliance Fact Sheet on end-of-life decision making:

Researchers Identify An Underlying Cause Of Pneumonia in PD

This news about the underlying cause of pneumonia in those with PD may be of interest to some. Presumably these findings apply to the atypical parkinsonism world as well. This press release from mid-September ’08 is from the University of Pittsburgh Medical Center. … nsons.aspx

Pitt Researchers Identify An Underlying Cause Of Pneumonia Common In Parkinson’s Disease Patients

PITTSBURGH, September 17, 2008 — Impaired coordination between breathing and swallowing may be the underlying cause of aspiration pneumonia in patients with Parkinson’s disease, report researchers from the University of Pittsburgh School of Medicine in a recent issue of the journal Dysphagia.

At least half of all Parkinson’s patients report having difficulty swallowing, and a higher percentage show swallowing abnormalities on X-ray tests. Aspiration pneumonia, a leading cause of death for individuals with Parkinson’s, often develops as a complication of mealtime swallowing problems, leading to the inhalation of food and drink. The high prevalence of swallowing problems and risk of aspiration pneumonia in these patients may be largely due to flawed breathing and swallowing patterns, according to the researchers.

The findings, marking a significant step toward preventing aspiration pneumonia in patients with Parkinson’s, indicate that swallowing problems may be respiratory-based as well as neuromuscular-based, helping to explain why Parkinson’s medications do not consistently help to improve swallowing function.

“Most Parkinson’s patients don’t know they have swallowing problems ­ even though aspiration pneumonia often is a severe complication of the disease ­ and Parkinson’s drugs most often do not improve these patients’ swallowing function,” said Roxann Diez Gross, Ph.D., principal investigator and assistant professor in the Department of Otolaryngology at the University of Pittsburgh School of Medicine. “Now that we know the respiratory system may play an important role in swallowing problems in patients with Parkinson’s disease, we can develop therapies to help these patients re-coordinate breathing and swallowing patterns to improve swallowing function and possibly avoid aspiration pneumonia,” said Dr. Gross, who also is a speech language pathologist and director of the Swallowing Disorders Center at the University of Pittsburgh Medical Center’s (UPMC) Department of Otolaryngology.

Dr. Gross, an expert in swallowing and its disorders, has begun to incorporate this and other research into therapies for Parkinson’s patients at the UPMC Swallowing Disorders Center, which is under the medical direction of the UPMC Department of Otolaryngology’s Ricardo Carrau, M.D., Bridget Hathaway, M.D., and Libby Smith, D.O. Dr. Gross currently sees Parkinson’s patients with swallowing disorders, and thus far, she has been able to stop aspiration instantly in some patients, after quickly teaching them how to re-coordinate their breathing and swallowing patterns.

While the underlying cause of swallowing problems in Parkinson’s has not been well understood, prior research has found that healthy adults swallow most often during exhalation and that exhalation regularly follows the swallow, even when a swallow occurs during inhalation. Dr. Gross’s study looked at 25 Parkinson’s patients and a control group of healthy adults, all between ages 51 and 84, as they swallowed standardized portions of pudding and cookies. While participants from both groups spontaneously ate, researchers measured their nasal airflow and respiratory movement to determine where swallowing took place in the respiratory cycle. This data was then blinded and analyzed, and results found the Parkinson’s patients inhale during and after swallowing significantly more often than the healthy adults. Also, the Parkinson’s patients swallowed at low lung volumes more often than the healthy adults.

This research was performed at the University Drive location of the VA Pittsburgh Healthcare System and was funded by the Department of Veteran’s Affairs Research and Rehabilitation Merit Review Program. Additional authors include Sheryl B. Ross, M.A., UPMC Department of Otolaryngology; Charles W. Atwood, Jr., M.D., UPMC Department of Pulmonary, Allergy and Critical Care Medicine and VA Pittsburgh Healthcare System; Kimberly A. Eichhorn, M.S., and Patrick J. Doyle, Ph.D., VA Pittsburgh Healthcare System; and Joan W. Olszewski, M.A., Henry Ford Hospital, Detroit.

Ask the Doctor – diseases mistaken for PSP

Here’s the “Ask the Doctor” section of the Fall ’08 CurePSP Magazine, which I received in the mail on 12/1/08: (not yet available on

Ask the Doctor
Lawrence I. Golbe, MD
Director of Research and Clinical Affairs, CurePSP
CurePSP Magazine, Fall ’08

Q: I’ve heard that some people with a diagnosis of PSP actually have corticobasal degeneration. Should I worry about that and get another opinion on my diagnosis?

A: No. PSP and corticobasal degeneration (CBD) are very similar and some experts think they’re even two versions of the same basic disease. They are treated similarly, start at the same average age, have the same long-term prognosis and even share a specific genetic variant as a contributing factor. The difference is that in CBD, there is less falling than in PSP but more difficulty in using the limbs for fine movement. CBD also tends to develop minor jerking movements and abnormal postures of the limbs. The limb problems of CBD are typically highly asymmetric — that is, far worse on one side than the other. All of the symptoms of both PSP and CBD are treated “palliatively,” which means that if the symptom appears, the doctor treats it as a symptom. Some day, if we are able to cure or slow the progression of one but not the other, or if the cures for the two disorders are different, then it will be important to differentiate between the two diagnostically.

Q: OK, so are there any diseases that have cures or very useful treatments that can be mistaken for PSP?

Parkinson’s disease (PD) is sometimes mistaken for PSP when it fails to respond to levodopa, a drug that replaces insufficient brain dopamine. Often, this is simply the result of insufficient dosing. Very often patients with PD have difficulty looking in the upward direction. The combination of this with a much greater-then-average need for levodopa can fool an inexperienced physician into diagnosing PD as PSP. But PD would not display difficulty looking down, the cardinal feature of PSP, and differs in most other respects as well.

Another condition that can be mistaken for PSP and requires special treatment is multiple small strokes. Aggressive management of lipids and blood pressure, administration of blood thinners, repair of narrowed arteries feeding the brain and treatment of heart problems can all reduce the risk of future strokes.

Finally, a very rare brain infection called Whipple’s disease can superficially mimic PSP. However, it usually has rhythmic movements of the eyes and jaw that are absent in PSP. It is diagnosed via MRI with contrast and a spinal tap and treated with antibiotics. In 20 years as a PSP specialist, I have never seen a case.

Brigadier Michael Koe writes a book about his wife Sara Koe who had PSP

My online friend Joe Blanc posted this to the Society for PSP’s Forum recently. It’s about Brigadier Michael Koe writing a book about his wife Sara, who had progressive supranuclear palsy (PSP). The Koes established the PSP Association in the UK, which is a wonderful organization.

Here’s an excerpt from the newspaper article:

“Mr Koe…said one of the reasons he decided to write the book was to help him deal with the experience of watching a loved one deteriorate from a condition which robs people of their balance, movement, speech, eyesight and ability to swallow. He said: ‘It’s also difficult in that the symptoms can make it seem like the sufferer has been drinking. Friends of Sara’s became less friendly. It was a pretty traumatic time and a pretty bad experience and I think writing it down has helped.'”


Book tells of tragic death of wife 

Brigadier Michael Koe with the book Charity begins at Home, which wrote after the death of his wife

Published Date: 01 December 2008
By Nick Spoors
A former soldier who set up a leading charity after losing his wife to a little-known brain disease has published an account to raise awareness.

Brigadier Michael Koe and his wife Sara started the progressive supranuclear palsy (PSP) association in 1994 after she was diagnosed with the condition. However, just eight months later she died from complications arising from the illness.

Mr Koe, of Wappenham, near Towcester, said one of the reasons he decided to write the book was to help him deal with the experience of watching a loved one deteriorate from a condition which robs people of their balance, movement, speech, eyesight and ability to swallow.

He said: “It’s also difficult in that the symptoms can make it seem like the sufferer has been drinking. Friends of Sara’s became less friendly.

“It was a pretty traumatic time and a pretty bad experience and I think writing it down has helped.”

The couple set up the PSP Association because they were frustrated at the lack of knowledge about PSP, even among medical professionals.

Since then, the charity has grown to a position where it now employs 21 people with nine volunteers, has helped 3,000 people and invested more then £2 million in research.

Mr Koe was awarded an OBE for his charity work.

Charity Begins At Home can be purchased from the PSP Association for £20 plus £3.50 postage and packaging with proceeds after costs going to the charity.

Cheques can be sent to PSP House, 167 Watling Street West, Towcester, Northamptonshire, NN12 6BX.

The charity can also be contacted via, by email on [email protected] or on 01327 3224110.

Voluntary, spontaneous and reflex blinking in PSP

As we’ve heard, blink rate is “profoundly sparse in PSP.” This recently-published Italian research looks at 11 patients with probable PSP and records eyelid movements during three types of blinking — voluntary, spontaneous and reflex blinking. Blinking was found to be abnormal in all three types.

Brain. 2008 Nov 29. [Epub ahead of print]

Voluntary, spontaneous and reflex blinking in patients with clinically probable progressive supranuclear palsy.

Bologna M, Agostino R, Gregori B, Belvisi D, Ottaviani D, Colosimo C, Fabbrini G, Berardelli A.
Department of Neurological Sciences and Neuromed Institute, Sapienza, University of Rome, Italy.

Patients with progressive supranuclear palsy (PSP) often have blinking abnormalities.

In this study we examined the kinematic features of voluntary, spontaneous and reflex blinking in 11 patients with PSP and healthy control subjects. Patients were asked to blink voluntarily as fast as possible; spontaneous blinking was recorded during two 60 s rest periods; reflex blinking was evoked by electrical stimulation of the supraorbital nerve. Eyelid movements were recorded with the SMART analyzer motion system.

During voluntary blinking the closing and opening phases lasted longer in patients than in healthy subjects. Furthermore, the peak velocity of the closing phase of voluntary blinking was lower in patients than healthy subjects.

During spontaneous blinking the blink rate was markedly lower in patients than in control subjects. Patient’s recordings also showed kinematic abnormalities of spontaneous (reduced peak velocity of both closing and opening phases) and reflex (reduced peak velocity and increased duration of the opening phase) blinking.

Recordings during reflex blinking disclosed an enhanced excitability of the interneuronal pool mediating the closing and opening blink phases.

Finally, the pause, a neurophysiological marker of the switching processes between the closing and opening phases, was prolonged in all the three types of blinking.

The abnormal kinematic variables correlated with patients’ clinical and kinematic features. Abnormal voluntary, spontaneous and reflex blinking in patients with PSP reflects the widespread cortical, subcortical and brainstem degeneration related to this disease.

PubMed ID#: 19043083 (see for abstract only)

From TheFreeDictionary:
kinematics – dealing with the study of the motion of a body

“Tools for Meal Time” – good article on dysphagia

The Fall 2008 CurePSP Magazine ( has a good article on swallowing problems that may be of interest to everyone — not just those dealing with PSP (progressive supranuclear palsy).

I’ve copied the full text below.  At some point, the newsletter will be available on; I received it in the mail this week.  You can sign up online at to receive a copy of future newsletters in the mail.



Tools for Meal Time
Laura Purcell Verdun, MA, CCC
Speech-Language Pathologist
Otolaryngology Associates, PC
Fairfax, VA

CurePSP Magazine
Fall 2008 Issue

Difficulty swallowing, or dysphagia, is commonly associated with many neurodegenerative diseases, specifically PSP or CBD.  In fact, difficulty swallowing may be one of the early symptoms of this disorder.  Given that complications related to difficulty swallowing are one of the most common causes of mortality, attention needs to be directed towards optimizing the ease and safety of swallowing.

What changes in eating and swallowing should we look for?

There are actually fairly typical behavioral changes with eating in PSP and CBD.  These often include difficulty looking down at the plate, mouth stuffing and rapid drinking, difficulty with self-feeding because of tremor or stiffness, restricted head and neck posture, and occasional difficulty opening the mouth.  These behaviors can make it more difficult to swallow and often contribute to decompensation of the swallowing mechanism resulting in coughing and choking.  Caregivers need to look out for these behaviors, because the person with PSP or CBD often is not aware of these changes.

What are some tools that we can use to help make meal times more successful?

1.  Use a suction machine, toothette swab (a pink or green sponge on a lollipop-type stick), or mouth rinse prior to meals to clear out secretions which may interfere with ease of swallowing.

2.  A firm chair with arms to support sitting upright for proper swallowing alignment is most ideal.

3.  Keep the plate in the line of vision, by placing the plate on top of a book or something similar, or substituting reading glasses for bifocals.

4.  Try experimenting with different plates and utensils.  Plates with higher edges and bottom grips enhance independence with eating.  Downsize eating utensils to limit how much food is being put in per mouthful.

5.  Experiment with different cups and glasses.  Some are just easier to drink out of than others, depending on a handle or even the thickness and shape of the lip.  Straws are generally not preferred because it results in acceleration of the liquid into the throat before it’s ready.

6.  Use a blender or food processor.  The goal is not to eliminate foods necessarily, but consider how they could be prepared difficultly to enhance ease and safety of swallowing.  Multiple consistency items such as fruit cocktail and broth based soups generally should be avoided, so blend them.

7.  A teaspoon can be used to restrict the amount of liquid placed in the mouth for each swallow.

Though clearly not a comprehensive list, here are some specific products that may be of benefit at meal times.  Look for other products available on these web sites as well:

Flexi-Cut Cup allows for drinking without extending the head and neck backwards, 3 sizes available (800/225-2610,

Provale Cup restricts the volume of liquid allowed per swallow (800/225-2610,

Maroon Spoons have a narrow shallow bowl to restrict how much food is placed on the spoon and in the mouth, come in 2 sizes (800/897-3202, [Robin’s note:  that’s the correct website!  You can also find these spoons at AliMed.]

Less Mess Spoon is designed with holes to keep food on the spoon, or drain away liquid from a multiple consistency food item (800/257-5376,

Scooper Plate with Non-Skid Base has a high curve to help scoop food onto a utensil (913/390-0247,

Skidtrol Non-Skid Bowl is a melamine bowl with non-skid base (972/628-7600,

Are there any cookbooks that may give us some ideas regarding meal preparation for people with trouble swallowing?

Achilles E and Levin T.  The Dysphagia Cookbook.  2003.  Cumberland House Publishing.

MEALS for Easy Swallowing.  2005.  Muscular Dystrophy Association Publications.  [Robin’s note:  the correct link to this book is The full contents of this book, including the recipes, are available online.]

Weihofen D, Robbins J, Sullivan P.  Easy-to-Swallow Easy-to-Chew Cookbook.  2002.  John Wiley & Sons, Inc.

Wilson JR and Piper MA.  I Can’t Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders.  2003.  Hunter House, Inc.

Woodruff S and Gilbert-Henderson L.  Soft Foods for Easier Eating Cookbook: Recipes for People who have Chewing and Swallowing Difficulties.  2007.  Square One Publishers.

If you have any concerns regarding swallowing, be sure to discuss this further with your neurologist and speech pathologist.