Category Archives: Living with a Neurological Condition

Loss of self: one aspect of being chronically ill

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I came across this article yesterday. Titled “Loss of Self: An Examination of one aspect of being chronically ill,” the article adapts information from a sociologist about loss of self to the Parkinson’s Disease world. It was posted to pdcaregiver.org. This article applies to PSP as well.

http://pdcaregiver.org/Loss_of_self.html

LOSS OF SELF: An examination of one aspect of being chronically ill
By Joy Graham
Posted to pdcaregiver.org

Our concept of “self” is developed and maintained through the social relationships we have with others. This is a lifelong process which needs daily validation. Those who fall ill suddenly may experience a rapid and traumatic change in the sense of self. Others who have a chronic illness may slip slowly and inexorably towards a recognition of an altered sense of self. For some, there is a comfortable accommodation to the new self–particularly if support mechanisms are well established. For others, this loss of a former self is in itself a grieving process, and as Kathy Charmaz claims, it is “a fundamental form of suffering in the chronically ill.”

The following is what I call an “interaction with a text.” I respond to an article called “Loss of self: a fundamental form of suffering in the chronically ill,” by Charmaz (Sociology of Health and Illness, Vol.5., No. 2, 1983) adapting it to fit the situation which might apply to some people with Parkinson’s Disease (PD). It comes filtered through my own experiences as the spouse of a Parkinsonian and a member of a support group, members of which have all given me insights into what it is like to live with PD.

I take up the discourse, because I agree with her when she says:

The narrow, medicalized view of suffering…ignores or minimizes the broader significance of the suffering experienced by debilitated, chronically ill adults. A fundamental form of suffering is the loss of self in chronically ill persons who observe their former self-images crumbling away without the simultaneous development of equally valued new ones.

Charmaz’ concern is with what happens when images of self are altered as a result of chronic illness.

As background, to what is in sociologist terms, a “symbolic interactionist” approach, Charmaz claims that American families (and I think we could substitute this for “Western” families) are not well structured to handle the strain of caring for an ill member. The Western emphasis–best summed up by the “Protestant Work Ethic” which values hard work; “doing” not “being”; independence; privacy and family autonomy, is an ideology which places an overwhelming strain on the family unit.

Illness is both a physical and psychological process. It is an experience through which a person learns new definitions of self and often relinquishes old ones. The chronically ill person draws upon past experiences and cultural meanings to look at his/her new identity shaped by illness. But what happens when an ill person’s self image is incompatible with his/her past criteria for a valued self? And what happens when others, especially significant others, see an ill person in a way which is at odds with the way the ill person perceives themselves?

Charmaz interviewed fifty seven chronically ill people and although none had PD, their experiences have much in common with anyone who is severely debilitated by PD. She found these individuals suffered from four main problems.

1. Restricted lives

“Loss of control from life [style] restrictions typically results in loss of self…and may foster an all-consuming retreat into illness.”

Narrow, restricted lives contrast sharply with other healthy adults who have ample opportunity for constructing and maintaining their valued selves. “The unpredictable course of many chronic illnesses fosters uncertainty and fear, and as a result, some patients voluntarily restrict their lives more than need be.” When the disease itself causes fluctuations and periods of remission, patients may feel they have to limit social activity, quit work and avoid contacts. “While they aim to ‘protect’ themselves,” Charmaz says, “they may do so at great costs to their self-images.”

“Protection” can take many forms. Reducing one’s lifestyle–for instance, moving prematurely to a unit and away from valued community interaction, can increase loneliness, boredom and isolation. Financial problems may make the ill person feel that they must live “marginally” and give up former social worlds entirely. The subsequent loss of friends results in a loss of prior self-image.

Illness can become the main focus of life for the chronically ill. Such a life revolves around symptoms and treatment. Families and friends often complain that the ill person is consumed with thoughts of self and illness, and previous interests are neglected, leaving a gap which all can feel.

Charmaz believes that when patients are given insufficient information and treatment, or they rely on information from one practitioner or perspective, they may remain unaware of possibilities which could increase their participation in life. This is sadly, often the case for those with PD, who may at times need, but fail to seek out the services of a wide range of health practitioners, such as physiotherapists, psychologists and speech therapists.

Participation in activities previously enjoyed may be limited. The ability to drive, for example, offers proof of freedom and choice. When driving is no longer an option, many feel the resultant restriction. Charmaz emphasizes that this loss of control over one’s life style–losing the right of choice, typically results in a a loss of self.

2. Social Isolation

“Social isolation is a major consequence of a restricted life.” When ill persons can no longer participate in community activities, visitors must come to them. Such visits require extra time and commitment on the part of the visitor, and “past reciprocity becomes altered and the chronically ill are left behind. The inattentiveness of former friends and relatives sometimes shocks ill patients and their intimates.”

It is easy for ill people to drift into isolation, unintentionally. Time, energy or concentration needed to sustain relationships may no longer be available.

“Social isolation increases as the ill person wears out family and friends. Continuous immersion in illness, whether from crisis of fear, also takes its toll on involved others. When so immersed, the ill person frequently remains unaware of the strain on them.” This can be exacerbated when the ill person refuses to seek out or to follow professional advice.

The visible signs of a chronic illness can cause discomfort to friends and acquaintances, as well as for family. Worsening physical ability may mean that a Parkinsonian may not feel comfortable eating in public, for example. This closes off one previously shared social activity and directly affects the spouse/caregiver as well. The seeming apathy of a Parkinsonian may hasten the drift into social isolation. A small child may not feel comfortable snuggling up to a parent or grand-parent whose arm is shaking. What does this do to the self-image of the parent? The grandparent? A couple may find the physical limitations imposed by PD a barrier to intimacy. How does this affect both partners?

Charmaz comments that social isolation is most visible in the chronically ill who live alone. Minimal social contacts–a phone call, a wave from a neighbour, a visit to the doctor, assume tremendous significance. Positive images of self reflected by even the briefest of interaction can help to maintain a positive self-image.

3. Discrediting Definitions of Self

Many Parkinsonians suffer from symptoms which may result in public stigmatization. Children particularly may jeer at someone who is shuffling or shaking. Such “images of self mirrored to these ill persons can be so unexpected or jarring that they shake the very foundations of their self-concepts.” It raises anew questions about identity, even if in the past, disability has been accepted.

“Experiences of being discredited, embarrassed or ignored or otherwise devalued also contribute to the growing isolation of ill individuals and to their subsequent reappraisals of self.” Someone who “talks down” or patronizes an ill person, in a false, cooing way which implies child-status, can devalue and alienate.

Some people may restrict activities rather than risk potential discrediting. Invitations to dinner may be declined. A newly-diagnosed Parkinsonian may take his medication in secret, rather than risk having to tell his work-mates about his disorder. Others may retire unnecessarily early.

“Clearly,” Charmaz says “the relative importance of those who discredit the ill person shape that individual’s self-concept. Images of self reflected by intimates are crucial for sustaining or discrediting of self-concept..”

Supportive carers or intimates can bolster the ill persons’ sense of self. A spouse who gives ample time for responses from a person with slow, slurred speech helps maintain the continuity with past pre-illness relationship. A carer who is skilfully alert to, and in tune with the ill person’s symptoms and needs can protect that person from risky situations which may cause embarrassment. This can be done without diminishing the ill person’s sense of self.

“Those without supportive intimates are more vulnerable to discrediting definitions.” Discrediting definitions of self from health professionals, especially doctors, become increasingly significant for an isolated ill person.

Charmaz notes that doctors often treat undiagnosed persons with esoteric and vague symptoms as neurotics. This is often the case with young-onset Parkinsonians–particularly women–and the frequent repetition of such discrediting stories is in itself, evidence that damage to self-concept has been inflicted.

However, because illness is so stressful, family members may not always be able to reflect positive images of self to the ill person, and may easily discredit them.

Charmaz says that discreditation may occur when the ill person fails to fulfil expectations, whether these are realistic or not. “These expectations may range from sexual activity to household tasks, regimen compliance and companionship.” The ill person will feel discredited if s/he is blamed for being “inattentive or uncaring.” A spouse may believe the ill person is conspiring to undermine them by performing inadequately or relinquishing responsibility. PD has its own unique set of problems due to the on-again-off-again nature of the illness, and change can occur within a very short time. This requires supreme patience on both sides. This feature of PD also provides challenges for health professionals, particularly nurses.

Discrediting definitions are apt to be adopted when the ill person (1) feels vulnerable and (2) identifies with those who discredit and (3) when the discrediting validates a hidden fear or recasts the ill person’s self-image in a new unattractive light.

Charmaz goes on to say that “Much discrediting occurs in more subtle ways.” Tacit devaluation can be implied: the non-ill spouse may interrupt, repeatedly correct or “interpret” in a manner which undermines. Worse still, an ill person may simply be treated as if they are not present, or as a “problem” rather than a participant in any interaction.

Ill people may actively participate in their own discrediting. A home-maker with PD, may make a valiant attempt to live as normally as possible. S/he can suffer great guilt for failing to perform housework to past high standards. Others may hang on desperately to a job, long past the time when they should have given up, despite the knowledge that they cannot perform in the job adequately, and well past the time when others feel they should resign. Charmaz comments that such “stoics” who will acknowledge symptoms only after becoming quite incapacitated are apt to suffer psychologically. “The inability to control one’s self and life in ways that had been hoped for…, or assumed…may clearly lead to self-discreditation and self-blame…. Attempts at returning to the normal world [work, for example] and failing, brings profound disappointment and grief for their lost self-images.”

“Self-discreditation begins, when ill persons can no longer take for granted some valued attribute or function (e.g. sexual functioning) which they view as fundamental for a positive self-image.”

Naturally, this failure to come to terms with a changing and changed definition of self has a negative effect on the family. “The pathos of the ill person who cannot accept dependency permeates the existence of caregivers.”

4. Becoming a Burden

“The sense of ‘becoming a burden’ may follow closely upon loss of hope and loss of recapturing positive self-images of the past.” With little power over the quality of their life, being immobilized and physically dependent, “illness” becomes the major source of social identity. This “stands in symbolic contrast to the way these persons wish to conceive of themselves…Becoming a burden symbolized that the person can no longer claim identities based on prior activities, interests or pursuits.” As the ill person focuses inward, interactions and relationships shift.

With a heightened self-concern, the chronically ill person becomes hyper-sensitive to anyone who may discredit them. Chronic illness fosters greater dependence on others for self-definition, just at a time when bonds to others may weaken, when isolation and loneliness intensifies, and when care-givers and friends are often overwhelmingly exhausted. At a time when they need more social contact to preserve their crumbling self-images, the chronically ill are less capable of maintaining relationships. Worse still, Charmaz concludes, if they openly reveal their suffering, they may further estrange those who still take an interest in them.

Conclusion: I think we must agree that self-concept may change with chronic illness. But such change, does not have to be as bleak and despairing as Charmaz depicts. At the outset, I made the point that “there may be a comfortable accommodation to the new self.” With the majority of Parkinsonians, this is the case. I have met many severely disabled Parkinsonians whose self-concepts are still as healthy as they always were, and who have gained new strengths from their disabilities.

We can learn much about the human psyche from the chronically ill, because being on the razor’s edge sharpens our perceptions of self and others. Carers, family, friends and health professionals must all take responsibility for helping people not only to “accommodate” themselves to PD, but to encourage new and validatory self-concepts. Charmaz has given us many pointers in this respect. Parkinsonians must also be willing to learn how to help themselves. This is the “raison d’etre” of the Parkinson’s Association, and for support groups.

LA Times article on anticholinergics + a list

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Hopefully you all are aware of the potential side effects of anticholinergic medication — particularly important to know about for the elderly and for those with dementia.

There was a good Los Angeles Times article on this topic last week.  See:

www.latimes.com/news/health/la-heb0713-cognitive-impairment-20100713,0,5747679.story

Medicines from class of drugs commonly used by the elderly, including Benadryl and Dramamine, can cause impaired thinking, study finds
Los Angeles Times
Thomas H. Maugh II
4:05 PM PDT, July 13, 2010

Mentioned in the article is a resource that I’ve never heard of before but looks like it would be very promising:  it’s a list of the “anticholinergic cognitive burden” of anticholinergic medications.  You can find it here:

www.indydiscoverynetwork.org/AnticholienrgicCognitiveBurdenScale.html

Anticholinergics block the activity of the neurotransmitter acetylcholine, which is important for cognition.  The most commonly used anticholinergics by the elderly are sleep aids (such as Benadryl, Excedrin PM, Tylenol PM) and incontinence drugs (such as Detrol).  Quite a few antidepressants (Paxil, Elavil) are also anticholinergic.

Robin

 

Hospital Delirium: one-third of those over 70; negative

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This New York Times article is on hospital delirium, which affects one-third of patients over 70.

Some excerpts:

“The cause of delirium is unclear, but there are many apparent triggers: infections, surgery, pneumonia, and procedures like catheter insertions, all of which can spur anxiety in frail, vulnerable patients. Some medications, difficult for older people to metabolize, seem associated with delirium.”

“But new research shows significant negative effects. Even short episodes can hinder recovery from patients’ initial conditions, extending hospitalizations, delaying scheduled procedures like surgery, requiring more time and attention from staff members and escalating health care costs. Afterward, patients are more often placed, whether temporarily or permanently, in nursing homes or rehabilitation centers. Older delirium sufferers are more likely to develop dementia later. And, Dr. Inouye found, 35 percent to 40 percent die within a year.”

“Dr. Malaz A. Boustani…found that elderly patients experiencing delirium were hospitalized six days longer, and placed in nursing homes 75 percent of the time, five times as often as those without delirium. Nearly one-tenth died within a month. Experts say delirium can contribute to death by weakening patients or leading to complications like pneumonia or blood clots.”

Here’s the full article.

http://www.nytimes.com/2010/06/21/scien … irium.html

June 20, 2010
Hallucinations in Hospital Pose Risk to Elderly
By Pam Belluck
New York Times

No one who knows Justin Kaplan would ever have expected this. A Pulitzer Prize-winning historian with a razor intellect, Mr. Kaplan, 84, became profoundly delirious while hospitalized for pneumonia last year. For hours in the hospital, he said, he imagined despotic aliens, and he struck a nurse and threatened to kill his wife and daughter.

“Thousands of tiny little creatures,” he said, “some on horseback, waving arms, carrying weapons like some grand Renaissance battle,” were trying to turn people “into zombies.” Their leader was a woman “with no mouth but a very precisely cut hole in her throat.”

Attacking the group’s “television production studio,” Mr. Kaplan fell from his hospital bed, cutting himself and “sliding across the floor on my own blood,” he said. The hospital called security because “a nurse was trying to restrain me and I repaid her with a kick.”

Mr. Kaplan’s hallucinations lifted as doctors treated his pneumonia. But hospitals say many patients are experiencing such inexplicable disorienting episodes. Doctors call it “hospital delirium,” and are increasingly trying to prevent or treat it.

Disproportionately affecting older people, a rapidly growing share of patients, hospital delirium affects about one-third of patients over 70, and a greater percentage of intensive-care or postsurgical patients, the American Geriatrics Society estimates.

“A delirious patient happens almost every day,” said Dr. Manuel N. Pacheco, director of consultation and emergency services at Mount Auburn Hospital in Cambridge, Mass. He treated Mr. Kaplan, whom he described as “a very learned, acclaimed person,” for whom “this is not the kind of behavior that’s normal.” “People don’t talk about it, because it’s embarrassing,” Dr. Pacheco said. “They’re having sheer terror, like their worst nightmare.”

The cause of delirium is unclear, but there are many apparent triggers: infections, surgery, pneumonia, and procedures like catheter insertions, all of which can spur anxiety in frail, vulnerable patients. Some medications, difficult for older people to metabolize, seem associated with delirium.

Doctors once dismissed it as a “reversible transient phenomenon,” thinking “it’s O.K. for someone, if they’re elderly, to become confused in the hospital,” said Dr. Sharon Inouye, a Harvard Medical School professor. But new research shows significant negative effects.

Even short episodes can hinder recovery from patients’ initial conditions, extending hospitalizations, delaying scheduled procedures like surgery, requiring more time and attention from staff members and escalating health care costs. Afterward, patients are more often placed, whether temporarily or permanently, in nursing homes or rehabilitation centers. Older delirium sufferers are more likely to develop dementia later. And, Dr. Inouye found, 35 percent to 40 percent die within a year.

“It’s terrible, more dangerous than a fall,” said Dr. Malaz A. Boustani, a professor at the Indiana University Center for Aging Research, who found that elderly patients experiencing delirium were hospitalized six days longer, and placed in nursing homes 75 percent of the time, five times as often as those without delirium. Nearly one-tenth died within a month. Experts say delirium can contribute to death by weakening patients or leading to complications like pneumonia or blood clots.

Ethel Reynolds, 75, entered a Virginia hospital last July to have fluid drained that had been causing her feet to swell. She wound up hospitalized for weeks, sometimes so delirious that “she screamed constantly, writhed,” said her daughter, Susan Byrd. “I had to get in bed with her because she thought someone was coming and they were going to hurt us,” Ms. Byrd said.

Ms. Reynolds ended up needing dialysis and surgery after an infection, and she died in September.

“We got her death certificate, and the No. 1 cause of death was delirium,” said Ms. Byrd, an ophthalmology nurse. “I was just blown away. As a nurse, I was expecting a quote-unquote medical reason: kidneys, heart, lung, an organ that I could understand had failed, and it wasn’t. It was delirium.”

Other triggers involve disorienting changes: sleep interrupted for tests, isolation, changing rooms, being without eyeglasses or dentures. Medication triggers can include some antihistamines, sleeping pills, antidepressants and drugs for nausea and ulcers. Dr. Inouye said that many “doctors don’t know how to appropriately use meds in older people, in terms of dosing” and compatibility with other medications.

Earle Helton, 80, a retired chemist hospitalized after a stroke, ordered his family to “throw a rope over the hedge so he could escape,” said his daughter, Amanda. He tried removing his hospital gown, loudly sang “Lullaby and Goodnight,” and doctors had to tie down his hands to prevent him from leaving, said his wife, Ginnie. Only when Dr. Inouye stopped some medications that other doctors had prescribed did he become lucid.

Delirium is sometimes treated with antipsychotics, but doctors urge caution using such drugs.

Delirium can wax and wane, not always causing aggressive agitation.

“It is often the person quietly in bed,” and the condition can linger for weeks or months, landing patients back in the hospital, said Dr. Julie Moran, a geriatrician at Beth Israel Deaconess Medical Center in Boston. “We would have to build 100 more floors to keep everybody until they cleared their delirium. There are times when we could be working round the clock seeing patients with delirium.”

Frequently, geriatricians say, delirium is misdiagnosed, or described on patient charts as agitation, confusion or inappropriate behavior, so subsequent doctors might not realize the problem. One study found “delirium” used in only 7 percent of cases; “confusion” was most common. Another study of delirious older emergency-room patients found that the condition was missed in three-quarters of them.

People with dementia seem at greater risk for delirium, but many delirious patients have no dementia. For some of them, delirium increases the risk of later dementia. In such cases, it is unclear if delirium caused the dementia, or was simply a signal that the person would develop it later.

Some hospitals are adopting delirium-prevention programs, including one developed by Dr. Inouye, which adjusts schedules, light and noise to help patients sleep, ensures that patients have their eyeglasses and hearing aids, and has them walk, exercise and do cognitive activities like word games.

Dr. Moran’s hospital removes catheters, intravenous lines and other equipment whenever possible because they can make patients feel trapped, leading to delirium. She said nurses repeatedly assess cognitive function so patients “don’t have smoldering symptoms of delirium for days before they end up yelling and screaming.”

Mr. Kaplan, a biographer of Mark Twain and Walt Whitman, later jotted notes about his hallucinations, including being in a police helicopter “tracking fugitives with enormous light.”

“Exhilarating until I become one of the fugitives,” he wrote. “End up cold and naked in some sort of subway passage.”

His fall bruised his elbow, leg and wrist, said his wife, the writer Anne Bernays. The next day, “he was gaga till about noon,” and even “looked me in the eye and said ‘I’m going to kill you,’ ” she said. “He didn’t know where he was and didn’t recognize me.”

Fortunately, his delirium was discovered very quickly and he made a very good recovery, Dr. Pacheco said. “But,” he said, “delirium is very disruptive for the patient, family, hospital caregivers.”

As Mr. Kaplan understated later, “It was a lot of unpleasantness.”

Speech and Swallowing Q&A – 5/13/10 Webinar Notes

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Today’s CurePSP (psp.org) webinar was presented by Laura Purcell Verdun, a speech-language pathologist who is experienced at treating those with movement disorders.  The topics were speech and swallowing problems.  The presentation was designed around some questions she had received in advance.  It was a terrific webinar.

Though today’s webinar was promoted as being about PSP, CBD, and MSA, very little of the info was disorder-specific.  So those coping with any atypical parkinsonism disorder will find value in this post.

There are three sources of info on the webinar:

1- The presenter’s slides have been posted to the CurePSP website:

psp.org/includes/downloads/inarslidestherapistseries1.pdf –> Editor’s Note: this link no longer works

2- The webinar was recorded, and the recording has been posted to the CurePSP website:

psp.org/includes/downloads/spwebinar_therapistsseries.wmv –> Editor’s Note: this link no longer works

3- My notes below.  (I’ve added topic headings and grouped the questions/answers by topic.)

Robin
———————————–

Speech and Swallowing Q&A for PSP, CBD, and MSA
Date:  May 13, 2010
Host:  CurePSP
Presenter:  Laura Purcell Verdun, speech/language pathologist, [email protected]

PSP, CBD, and MSA are rare aggressive neurodegenerative diseases that will impact swallowing and communication abilities at some point in the disease progression.  Management of swallowing and speech disorders in these circumstances requires changing intervention strategies as the disease progresses.

CHOKING

Is choking a bad thing?
* Yes
* Sign that the timing, coordination or strength of the swallow mechanism may be changing
* Sign that material (food, liquids, saliva) may be “going down the wrong way”
* Not comfortable and potentially scary
* Receive instructions on the Heimlich Maneuver

Why does someone choke only when eating soup?
* Broth is considered a thin liquid, which move faster than any other consistency.  If the swallowing mechanism is moving slowly, airway protection may be delayed.
* Soups, particularly, broth-based, are multiple-consistency items.  It’s hard for the swallow mechanism to manage the thin liquids, and the solids that need to be chewed, at the same time.
* Options:  use cream-based soups (denser consistency so they move slower) or blend soups so they are one consistency

SWALLOW STUDY

What is a swallowing study?
One type is called VFSS (videofluoroscopic swallowing study)
* this type may also be called MBSS (modified barium swallowing study)
* video xray of eating and drinking
* presented with various consistencies and volumes of food/liquids/pills
* defines present level of swallowing function compared to normal
* guides therapy efforts
Another type is called FEES (feberoptic endoscopic swallowing study)
* swallowing is examined via a flexible nasoendoscope

Do I need to have a swallowing study?
* Not necessarily
* For the swallowing study to be most revealing, it should reflect the home eating environment.  Specific foods, self-feeding, straws, etc.  Bring in 1-2 food/liquid items that have proven to be most problematic.
* Too often the swallowing study illustrates “you’re swallowing fine” because the swallowing study is a very controlled environment
* This study defines the extent of the swallowing problem and what is to be done about it

ASPIRATION

What is aspiration?
* Aspiration is when saliva, food, or liquids travel below the vocal folds into the airway (trachea)
* All these items should travel through the throat (pharynx) directly to the food tube (esophagus) to the stomach
* Chronic aspiration may cause aspiration pneumonia, an infection in the lungs

How do I know if I am aspirating?  Will the impact on my lungs be immediate?  Will I feel discomfort before pneumonia sets in?
* May not know you are aspirating.  “Silent aspiration” is when food, liquids, or saliva go down the “wrong way” without any outward sign.
* Only way to confirmation aspiration is by testing.  Tests include chest xray, swallowing study, etc.
* Effects may or may not be immediate but may be cumulative
* Monitor for chronic low grade fever, increased chest congestion, and coughing (especially coughing that occurs more during mealtimes than at other times of the day)
* Discomfort most likely to arise from coughing

Is it possible to have aspiration for liquids without dysarthria?
* Yes
* Dysarthria = when there is difficulty pronouncing sounds, consistent articulation errors, often with muscle weakness and discoordination
* In these neurodegenerative disorders, these two symptoms (dysarthria and dysphagia) often develop alongside each other
* Once dysarthria is present, there is also concern for changes in swallowing because many of the same muscles and nerves are involved

Who is at risk for aspiration pneumonia?  (From Langmore, et al.  Dysphagia 1998.)
* Altered mental status
* Advanced age
* Presence of a feeding tube
* Prior history of aspiration pneumonia
* Malnutrition
* Physical immobility
* Feeding dependence
* Poor oral hygiene

THICKENERS

Do thickeners taste OK?
* Yes
* They change the consistency of the liquid or food item, not the flavor
* Commercial thickeners come in two types — powder and gel.  Powder = Thick-It, Thick-It 2, Thicken Up, NutraThik, Thicken Right, etc.  Gel = Hydra-Aid, SimplyThick (good choice if you are dealing with diabetes because it’s not starch-based).
* Pre-thickened liquids from Aqua Thick, Thick&Easy Drinks, etc,

Sources for commercially-available thickeners:  [Robin’s note:  start with these websites and then enter the name of the product in the search box] Thick-It:  thickitretail.com
ThickenUp (from Resource):  nestle-nutrition.com
Hydra-Aid:  linksmed.com
SimplyThick:  simplythick.com
Thick & Easy:  hormelhealthlabs.com
Aqua Thick:  cwimedical.com
A good online medical supply store (for thickeners and other items):  brucemedical.com

Are there other ways to thicken without commercial thickeners?
* Yes:  oatmeal, gelatin, fruit purees, blend in frozen fruits, bananas, banana flakes (available at health food stores), potato flakes, Silken tofu (soft)
* Blend vegetable soups to thicken them
* I don’t recommend eating JellO in the presence of swallowing problems.  In my experience, JellO is very problematic to swallow.

More thoughts about thickened liquids:
* May not be tolerated well by lungs if aspirated
* May contribute to reduction in fluid intake such that you can become dehydrated
* Not entirely clear how well water is absorbed in the gut from thickened liquids
* Quality of life considerations

DELAY IN SWALLOWING

What does someone hold foods/liquids in her mouth for 15-20 seconds before swallowing?
* Could be related to changes in the neurophysiology of the swallow mechanism, or cognition, including apraxia or impaired sensation.
* Suggested approach to dealing with this situation:
– stick with food/liquid items where this seems to be less of an issue
– verbal cues may help (“go ahead and swallow”) but don’t rush someone
– manually apply pressure under base of tongue moving forward may trigger swallow
* Meal times should be limited to anywhere from 30-60 minutes.  Consider smaller, more frequent meals.
* Concern is for expending more calories trying to eat than consuming

MEALS

What meals are appropriate for a swallowing disorder?
* Maintain a balanced diet
* Don’t necessarily eliminate foods but prepare foods differently to enhance ease and safety of swallowing
* Stick with moist and tender foods, such as dark meat chicken, fish, casseroles, pastas, stews, cooked vegetables, canned fruit, etc.
* Use condiments, gravies, or sauces to lubricate foods
* Avoid highly textured, particulate (something that breaks into pieces), and dry foods, such as red meats, rice, corn, firm breads, crackers, nuts, popcorn, etc.
* Meats cooked medium rare may be more tender than something well done
* Blend multiple consistency items such as fruit cocktail, broth-based soups, oranges, watermelon, cold cereal.  (Example:  If you are eating a bowl of Cheerios, let the Cheerios sit to soak up milk, then pour off the remaining milk, and eat the soggy Cheerios.)
* Foods may need to be pureed in advanced stages of swallowing difficulties
* Try foods/liquids of different temperatures
* Try carbonated liquids, sparkling vs. still water
* Consider more frequent, smaller meals
* Consider use of nutritional supplements (Ensure, Boost, Carnation Instant Breakfast, Scandishake, etc)

Swallowing cookbooks:
The Dysphagia Cookbook, 2003
Meals for Easy Swallowing, 2005.  See:  als-mda.org/publications/meals
Easy-to-Swallow Easy-to-Chew Cookbook, 2002
Soft Foods for Easier Eating Cookbook:  Recipes for People who have Chewing and Swallowing Difficulties, 2007.
I Can’t Chew Cookbook: Delicious Soft Diet Recipes for People with Chewing, Swallowing, and Dry-Mouth Disorders, 2003.

Swallowing and feeding products:
* Flexi-Cut Cup and Provale Cup:  from alimed.com
* Independence Spillproof Flo Tumbler:  from kcup.com
* Wedge Cup:  from wedgecup.net
* Maroon Spoons:  from proedinc.com
* Scooper Plate with Non-Skid Base:  from bindependent.com
* Skidtrol Non-Skid Bowl:  from maddak.com
* A variety of products from Bruce Medical Supply:  brucemedical.com

Swallowing tips that families or other speech therapists have offered:
* Place a digital picture frame with audio on the dining table.  Play recorded messages for mealtimes that say “eat slow, one bite at a time, small sips” etc.
* Add bananas to thicken smoothies
* Use Fla-vor-ice tubes.  Empty the contents, fill with water or OJ, and position upright and freeze

Will using a straw help with swallowing?
* I can go both ways on this.  Using a straw can be problematic because it can accelerate the liquid to the back of the mouth/throat.  Another issue is that you are sucking in at the same time, your airway is still open.  But a straw may be beneficial because you can limit intake.  Sip – hold for a second in the mouth (letting the throat catch up) – then swallow.  Some people do better by using a straw rather than drinking from a cup.  Some people get a rhythm going using a straw and taking multiple swallows.
* This can be evaluated during a swallow study

How can we plan ahead for swallowing problems in the future?
* No talking and eating/drinking at the same time
* Monitor for mouth stuffing and chugalugging liquids
* Take time to eat

If a family member with PSP is gaining weight, is it OK to exceed 30 minutes for mealtimes?
* I’ve seen weight gain in PSP, not in CBD or MSA.  In PSP, there’s a tendency towards disinhibition, including rapid drinking and rapid eating.
* This isn’t a concern from a swallowing point of view.  It may be an issue for ambulation — both the patient getting around and the caregiver helping the patient.
* Goal should be to keep weight stable

SWALLOWING TREATMENTS?

I started taking nortriptyline, an antidepressant.  It seems to have helped my swallowing.  Could this be the case?
* Would suspect that improvement is not related to the medication
* This medication may dry up secretions somewhat
* Discuss with your neurologist

What is Vital-Stim?  Will it help persons with these diseases?
* Reports to apply small electrical current to stimulate the muscles responsible for swallowing
* Must be prescribed by an MD
* Limited data, no studies specific to neurodegenerative diseases except for one very limited study with MS.  Clinical efficacy and utility of this therapy remains inconclusive.
* I don’t recommend VitalStim for these populations

FEEDING TUBE

When might a feeding tube be indicated?
* Recurrent aspiration pneumonia
* Reduced enjoyment of mealtimes
* Increased duration of mealtimes such that you are burning more calories than you are getting in
* Progressive weight loss or dehydration, despite optimizing feeding situation
* Trouble swallowing coexisting with depressed alertness
* Evidence of significant silent aspiration with swallowing study or other clinical evidence of frequent aspiration

What do I need to consider about a feeding tube:
* Discussions need to take place sooner rather than later, and repeated frequently.  Prefer to initiate discussions prior to a health crisis.  Patient and family should agree in advance with the doctor about what is hoped to be accomplished from trying a feeding tube.  Decisions must revolve around assessment of burdens and benefits.  Requires value judgments and consideration of quality of life.
* Gastric contents and saliva can still be aspirated
* Feeding tube placement does not preclude oral intake
* No randomized controlled research trials to indicate whether tube feeding is beneficial compared to continuation of oral feeding for survival

ORAL HYGIENE

How important is oral hygiene?
* Very important
* Goal is to keep mucosa of the mouth clean and moist to minimize bacteria of the mouth.
* If the mouth is moist, it’s easier to swallow
* May be increased incidence of aspiration pneumonia in those with poor oral hygiene in the setting of swallowing difficulties

What should I do for oral hygiene?
* Scrupulous dental care (visit dentist, changing to a better toothbrush)
* Avoid smoking, alcohol (including mouthwashes that contain alcohol), and caffeine.  Alcohol and caffeine may dry the mucosa of the mouth.
* Drink plenty of water throughout the day
* Minimize non-cooked dairy products as these may thicken secretions
* Rinse out mouth after meals
* Club soda or sparkling water may help cut through secretions
* Avoid gels and mouthwashes that contain alcohol, menthol, or whitening products
* Nighttime humidifier at bedside as these keep the mouth, nose, and throat mucosa moist.  Keep them clean.
* Consider a suction machine, in later stages.  One drawback is that the more you use the machine, the more the nose and throat get dried out, thereby causing the body to produce more secretions.  A suction machine may be helpful to clear the mouth before meals.
* Make sure dentures are clean and well-fitting
* Consult with a dentist

Oral care products:
* Biotene:  toothpaste, mouthwash, and Oral Balance Moisturizing Liquid; products contain three primary enzymes that boost and replenish salivary defenses; available at Target, WalMart, etc.; biotene.com; 800/922-5856
* Oasis moisturing mouthwash
* Plak-Vac Suction Toothbrush:  800/325-9044; trademarkmedical.com/personal/personal-oral.html
* Toothette Swabs:  dental hygienists say that they aren’t good for cleaning out the mouth because they aren’t abrasive enough

How effective are WaterPiks?
* Helpful in getting out large particles.
* I don’t know if they are abrasive enough to clean enamel and plaques.  I view this as a supplement to brushing.
* Also, if someone has swallowing problems, I don’t know if they can tolerate a WaterPik.

SPEECH THERAPY

Is speech and swallowing therapy efficacious?
* Depends on circumstances and what is trying to be accomplished
* Efficacy of exercise is difficult to document given variable rates of progression
* Some studies describe longitudinal progression of speech and swallowing dysfunction.  (Goetz, et al, Neurology 2003.  Muller, et al, Archives of Neurology 2001.)
* Very few studies regarding treatment of speech and swallowing in these populations.  (Article by Countryman, et al, Journal of Medical Speech Pathology 1994.)

What is LSVT (Lee Silverman Voice Treatment)?
* Proven to significantly improve voice quality in PD.  Relevant to our discussion tonight given the similar symptomatology.
* Very specific, intensive treatment program emphasizing LOUD speech.  A loud voice generates improved respiratory support, articulation, and facial expression/animation.
* Developed by Lorraine Ramig, PhD
* lsvtglobal.org

Should I keep doing LSVT forever?
* Specific to these populations, yes…whether it is LSVT or some other form of speech therapy
* Exercises should be maintained daily
* These are progressive disorders.  Communication will deteriorate over time.
* Speech therapy is of limited benefit if those skills learned are not maintained outside the clinic

Will LSVT help my swallowing?
* One report (Sharkawi, et al, JNNP 2002) showed some improved swallowing movements in patients with PD.  The disorders we are talking about tonight exhibit some similar deficits.
* LSVT hasn’t been studied in these populations

A family member completed speech therapy almost a year ago.  Now his speech has declined.  Is it possible to improve a second time?
* This is a common scenario.  This raises the issue of whether direct speech therapy should be considered in the first place, and what techniques specifically should be addressed.
* It’s best to intervene early.  Late-stage interventions are often frustrating.
* Emphasis should be placed on functional communication
* Improvement could be possible.  The issue is:  can it be maintained?  That’s likely to be more difficult as the communication impairment has progressed over time.

I have MSA and I’ve taken speech therapy yet my speech is bad and gets worse.  Is practice over time very helpful?
* Exercise does not appear to be contraindicated in these three disorders
* Whether practice helps depends on:  severity of speech impairment and effect on overall speech intelligibility, state of underlying disease process, specific exercises you are doing
* A trial of speech therapy (a couple of visits) to investigate stimulability is often reasonable.  Can you carry over what you’ve learned?
* Emphasis should be placed on improved speech in the home environment.  You may need to consider assistive communication.

When is speech therapy covered by Medicare or other insurance?  I was told that with PSP, speech therapy wouldn’t improve my speech, so the expenses wouldn’t be covered.
* 2010 Medicare cap is $1860 for combined speech and physical therapy, and a separate $1860 for occupational therapy
* asha.org has two good resources on insurance coverage:
asha.org/practice/reimbursement/medicare/medicare_documentation.htm
asha.org/News/Advocacy/2010/Health-Care-Reform-Legislation-Law.htm
* Depends on what the goals are for speech therapy.  Are you focusing on speech restoration or speech compensation (trying to make adjustments and optimize the abilities you presently have)?  Are you looking at direct speech therapy or assistive communication?

Is the $1860 cap for one-year or a lifetime?
* It’s an annual cap
* It often times gets adjusted from year to year

WEAK VOICE

I can only speak in a 2-word whisper.  What exercises should I do?
* Need to determine why the voice is so weak.  Get an exam by an ENT and a speech pathologist.
* Options:  if speech remains relatively intact, try LSVT.  And consider a personal voice amplifier.  (Example – Chattervox from chattervox.com)

Will breathing exercises help to strengthen my weak voice?
* Taking a breath prior to speech is almost always beneficial.  (“Take a breath and tell me what you want for dinner”)
* Inspiratory and expiratory muscle training can improve respiratory muscle strength and endurance.  But will this change voice and speech production?  Not so, for one MS study.

Is there a procedure to help the voice work better?
* Weakness of voice is common.  This is attributed to vocal fold atrophy and weakness of respiratory drive to keep vocal folds vibrating and project the voice.  (With atrophy, the muscles of the vocal folds are thinner and weaker.)
* Vocal fold augmentation is a procedure where a filler is injected into the vocal folds to bulk them up.  Makes it easier to vocal folds to vibrate against one another.  Variable benefit in these populations.  There are no studies.  Two things that indicate if you would more likely benefit:  if you have strong breathing muscles and if the problem is with voice rather than speech.  See adiesse-voice.com for info on the most common filler.

MUSCLE TRAINING

EMST (expiratory muscle strength training)
* Was found to be helpful to increase cough and swallowing in PD
* Dr. Sapienza (Univ of FL) is presently doing a study with PD and MS.  [Robin’s note:  In 2009, Dr. Sapienza was also studying EMST in PSP.  I will follow up with her because she was going to send me the preliminary data.] * Device called Aspirate EMST 150.  Available as aspireproducts.org.  Simple to use and maintain.  There is a specific routine that is recommended.
* I don’t know if this would be of benefit but it has the potential to help

SPEAKING TIPS

Is there anything else I can do to improve my speech so others will be able to understand me?
* Is it a problem with the voice, meaning the sound source, or the speech, meaning how you pronounce words?
* Make sure to have listener’s attention
* Provide context upfront.  Example:  “I want to talk about what’s for dinner.”
* Optimize environment.  Turn down radio, turn down TV, put your newspaper down.
* Communication is a two-way street
* Make sure hearing impairments are addressed
* Speak slowly
* Exaggerate speech and mouth movements
* Do not trail off — pronounce all sounds.  Voice must be strong from beginning to end.
* Space between words
* Be more forceful with speech
* Use a minimum, yes-no system

ASSISTIVE COMMUNICATION

What do I need to consider with assistive communication?
* Is this serving as the primary means of communication or to supplement speech?
* With whom will you need to communicate?
* What type of info needs to be communicated?
* How will you access the device?  (physical capabilities, visual capabilities)
* Any cognitive limitations?
* What type of environment?
* Consider safety within the home or outside the home.  Medic-alert system.

What assistive communication options are available?
* Two system types:  unaided (rely on the person to convey the message through gestures, sign language, etc) and aided systems (relies on the use of equipment or tools)
* Aided systems range from low-tech (paper, dry erase board, communication board) to high-tech (speech generating devices or written output; electronic or software-based devices using pictures, words or phrases to create messages)

How will someone communicate when he can no longer talk?
* Speak with your speech pathologist to investigate these resources
* Alphabet supplementation with an “alphabet board.”  Speaker points to the first letter of each word spoken.  Or, can spell the entire message.
* Communication board.  One example is a WordPower OnBoard, which is a manual communication board composed of the 100 most common English words.  There’s an alphabet board on one side.  The other side can be customized.  Available from:  store.mayer-johnson.com/us/word-power-onboard.html
* Written-choice communication.  Requires partner support.  Partner establishes the context or question, and written choices.  Partner writes down “milk – coffee – Coke” and asks “What would you like to drink?”
* iPhone, iPad, and iPod application called Proloquo2Go.  Preset communication buttons.  Text to speech.  Save customized sayings.  iPhone and iPod are harder to use because they are smaller.  proloquo2go.com. Might be $190.
* Lightwriter (toby-churchill.com) or Dynavox (dynavoxtech.com):  portable text to speech communication aids.

Will insurance cover a speech generating device (SGD)?
* Yes, Medicare provides benefits for all currently available digitized speech output devices
* There are two good resources on insurance coverage:
asha.org/practice/reimbursement/medicare/sgd_policy.htm
aac-rerc.psu.edu/index-38242.php.html
* Consult with your speech pathologist to determine if this will be helpful and which one to get

AAC online resources:
asha.org/public/speech/disorders/InfoAACUsers.htm
resna.org
aac-rerc.psu.edu
assistivetech.net
isaac-online.org/en/home.shtml
ussaac.org

OTHER DEVICES

Have you had any experience using an electrolarynx to improve speech?
* This is a battery-operated device used primarily in those who have lost their voice/larynx to cancer.  The hand-held vibrating head provides a sound source.
* Listen to a sample of this computer-sounded voice at:  webwhispers.org/library/BobAL.mp3
* Requires hand coordination for neck placement and on-off, as well as relatively intact speech
* Not typically indicated
* I have ever used this device in this population

FINDING A SPEECH PATHOLOGIST

How do I find a speech pathologist?
* Find someone who is ASHA certified (asha.org/findpro) and state-licensed
* LSVT:  lsvtglobal.com
* Movement Disorders Society:  movementdisorders.org
* APDA:  apdaparkinson.org  [Robin’s note:  the Information & Referral Center in your local area may have a list of speech pathologists who work with those with Parkinson’s Disease.] * NPF:  parkinson.org  [Robin’s note:  click on “Find Local Resources” at the top.] * Ask your neurologist for a referral to a speech language pathologist.  Ideally, look for an SLP with experience in movement disorders or any neurodegenerative population.

IN CONCLUSION

Concluding remarks:
* Consult with your MD and speech pathologist to tailor a program specific to your needs
* Continue to follow-up with them

UPCOMING MATERIALS

These flyers will be available in the near future through CurePSP:
* designed for speech language pathologists (“what every SLP should know…”), OTs, and PTs
* on PSP, CBD, and MSA
* you can get them for your SLP, PT, and OT

Physical Therapy Q&A (Webinar Notes, 4-8-10)

Date
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Last Thursday’s CurePSP webinar with Heather Cianci, a physical therapist who is an expert in movement disorders, was very good.  We need more people like this in our communities!

Though the webinar was hosted by CurePSP, all of the disorders in our group will find useful information in the webinar.

Here are some key points from my perspective:

  • Start an exercise program immediately.
  • For fall prevention, consider gait and balance training, home modifications, acceptance that certain things cannot be done without assistance, and adaptations.
  • How should the caregiver help someone walk? Often caregiver will stand to the side and put an arm around the back.  Sometimes holding at the elbow is good enough.  Sometimes holding hands is good enough.  This should be practiced together, in front of a PT.  If someone is less stable but isn’t ready for a walker, consider using a gait belt.
  • As soon as falls or balance problems begin, have PT and OT assessments for “prehabilitation,” education and training.  Learn new ways of transferring, walking (maybe with equipment), balance exercises, turning, bathroom safety, etc.  If someone can’t remember these techniques, someone must be with the patient at all times.  Later in the disease, the patient can’t move safely without falling.  Even when someone is home-bound, all effort should be made to keep someone active.
  • Generally, a 4-wheeled rolling walker that has seat and brakes works the best for PSP.  Durable wheels that make turns (swivel).
  • Examples of devices for getting out of a chair:  chair risers (that attach to the bottom legs of a chair); firm cushion to raise the height of a seat; power chairs.
  • Examples of devices for getting out of bed:  bed rails; wedge pillows; electric beds.
  • Two good websites for equipment are 1800wheelchair.com and sammonspreston.com.

The webinar was entirely questions and answers.  My notes are below.

Robin

——————————————————————————–

Heather Cianci, PT
Physical Therapy:  Questions & Answers
CurePSP Webinar
4-8-10

Q:  Falls play a very significant role in all of these disorders.  I am interested in treatment strategies to assist with managements.

A:  As soon as falls or balance problems begin, she recommends PT and OT assessments for “prehabilitation,” education and training.  Learn new ways of transferring, walking (maybe with equipment), balance exercises, turning, bathroom safety, etc.

If someone can’t remember these techniques, someone must be with the patient at all times.  Later in the disease, the patient can’t move safely without falling.

Even when someone is home-bound, all effort should be made to keep someone active.

Q:  Even with limited exercise or mobility, I get short of breath to the point of not being able to speak in more than a whisper.  How can I exercise and get any benefits if I can’t breathe?

A:  You may need to see a pulmonologist.  If you are cleared by this MD, you may need a supervised exercise program monitored by a respiratory therapist.

972-243-2272 Respiratory Care, www.aarc.org

Q:  I am experiencing extreme muscular soreness in my left quad.  Why?  I am in pain.  My internist provided no answers.

A:  Hard to answer since I can’t conduct an assessment.

The quad plays a role in straightening the knee.  See a PT for an assessment.  If this is a pulled muscle (and that sounds like what it may be), heat and massage may help.

Q:  I have pain above my eyes.  Is this due to muscle problems?  My left eye does not open all the way.

A:  Without being able to do a formal assessment on you, I’m not able to give an exact answer.

See an ophthalmologist about the pain and the eye not opening.  This may be a pulled muscle in the head!

The eye not opening may be due eye lid muscle weakness or blepharospasm.  Treatments for blepharospasm:  botox injections, eyelid crutches, or Lundie loops on the glasses.

Ptsosis can be a problem.

Q:  When my husband sleeps over 12 hours, his balance is much better.  Is there any relationship?

A:  It makes sense that a well-rested person can handle balance challenges.  There is no research supporting this.

There are lots of sleep problems in PSP.

Q:  Could you address the differences in the visual disturbances between PSP, LBD, CBD, and/or FTD?

A:  In LBD, a big problem is hallucinations.  This may come into play when a patient tries to get up and talk to someone they are hallucinating about.  Education of care partners that this is normal.  Don’t try to talk the patient out of the hallucination.  Is there a pattern to the hallucinations?

In FTD, there are no visual deficits.  There are behavioral problems.  There is disinhibition; the usual filter is not there.  Many times these patients experience apathy.

In CBD, many patients suffer from visuo-spatial disturbances.  In a study, CBD patients may not have seen the depth of something (so they missed a step) or they may think a dark spot on a rug is a hole in the floor.

In PSP, there is a marked problem with vision.  Many play into the functional role of people moving around.  First is the difficulty with vertical eye movements.  Some can’t see down.  Some can’t see up.  Obviously if someone can’t look down, they can’t see the floor.

Second, often times the eyes are fixed at a given target.  They experience square-wave jerks.  Third, there can be a misalignment of the eyes.  Fourth, there is a problem with cogwheel tracking of moving objects.  And, they lose the quick phase of movement.  They experience nystagmus.  They have blepharospasm (involuntary closing of the eyes and inability to close the eyes).  Many have a staring look or a look of surprise.  Many have photophobia or intolerance of bright light.  Some with PSP can’t stop blinking in bright light.

Q:  What exercise or therapy has an effect on balance or eye movement in PSP patients?

A:  Cris Zampieri gave the last webinar.  There are exercises to help with this.  Eye movement exercises and balance exercises did better with their mobility than those who did balance exercises alone.  (Zampieri has published two studies.)

There was also a case report on one mixed PSP/CBD patient.  Treadmill study.  Improvement demonstrated.

Another case report on body-weight supported treadmill training.  Improvement demonstrated.

Unanswered questions:  when do we start these exercises?  How do we change the exercises?

Q:  Is incontinence a symptom of PSP?

A:  Yes.  Seen more in the later stages.
Q:  Is it worth focusing on balance and eye gaze when the patient can no longer stand or straighten his head to see?

A:  Always important to continue an exercise program, regardless of the stage of disease.  Exercises can be done in bed, seated, standing while holding on to a chair, etc.  Exercise makes us feel better.

Q:  Is there any type of eyeglass lens that will help to focus things that are below the fixed eyeball?

A:  Consider prisms.  Different prisms are needed for different tasks (eg, reading vs. watching TV).  Bring things up to the level of the eyes (gaze level).

Q:  Is there anything that can be done to prevent nystagmus?

A:  As far as I know, there isn’t anything that can be done.

Q:  My mother is dragging her leg.  Any recommendations on strengthening?

A:  Without doing an actual assessment, it’s not possible for me to say what the exact cause of the leg dragging is, or the best approach.  She may need an assistance device.  She may need to be taught strategies to take a larger step and land on her heal.

Q:  Can anything be done to slow the progression of eye changes?

A:  Nothing can be done to slow down eye changes.  You might consider patching one eye.

Q:  I’ve had PSP for the last 6 years, and have fallen over 1200 times.  Physical therapy has been discontinued.

A:  If you have a medical reason for physical therapy, it should be covered.  If you are not reaching your goals, insurance may not pay.

Look for a fitness class or a fitness trainer.  Go to a local gym.

Maybe you need home modifications, more assistance in the home, and a scooter or wheelchair.  This is dangerous!  The falls must be prevented!

Q:  What is effective for treatment in early/mid stage?  Should we focus on vision training, balance, neck mobility?  What can we do to prevent falls — compensation vs. rehab?

A:  Start an exercise program immediately.

Fall prevention:  gait and balance training, home modifications, acceptance that certain things cannot be done without assistance, and adaptations.

Q:  What is the best walker for PSP patients?

A:  Generally, a 4-wheeled rolling walker that has seat and brakes works the best.  Durable wheels that make turns (swivel).

We like to use 1800wheelchair.com.  800-320-7140 phone.  Get a catalog.

PSP patients should NOT use an aluminum, straight, 2-small-wheeled walker.  You can ask for a replacement for swivel wheels for this walker.

Q:  Is it a good idea to put weights on the front of the walker?

A:  This is done to prevent backward falls.  That’s the theory.  If the person doesn’t know how to properly use the device, this walker won’t work.

It’s best to have a PT assess your walking and suggest the best device.

Q:  What is the best device for getting up from a sitting or lying position?

A:  There are many good devices.  It’s best to have a PT or OT try the devices with you to find the right one.

Examples of devices for getting out of a chair:  chair risers (that attach to the bottom legs of a chair); firm cushion to raise the height of a seat; power chairs

Examples of devices for getting out of bed:  bed rails; wedge pillows; electric beds

Q:  While walking, the feet become frozen.  How do you help the PSP patient “unfreeze”?

A:  These techniques come from the PD world.  Don’t fight the freeze.

1- stop moving and steady yourself
2- take a breath and stand tall
3- make sure the weight is on both feet equally.  (Often with a freeze, the weight is imbalanced.)

Focus on walking; do that activity well.

Don’t pull on or push someone who is frozen. Talk them through it.  Have them shift their weight.  Or count 1-2-3 and take a big step.  Or step over something on the ground.

Lots of auditory and visual cues can help.  Her Center has a handout on this.

Q:  Is PT beneficial for all stages?

A:  Yes!

Q:  Are reflexology and massage beneficial?

A:  Many patients do get temporary relief from pain and stiffness from massage.  There’s no research to support or refute reflexology or massage.

Q:  Why does PSP cause one to run into walls and doorways, even when being guided?

A:  Lots of different things going on with PSP.  Loss of balance.  Visual-perceptual problem.  Loss of ability to scan the environment (anticipatory scanning).  May have double vision.  May be from mental confusion.

Q:  During the Zampieri webinar, did she say that they are running tests with rats who have PSP?

A:  No, these studies were done on rats with chemically-induced Parkinson’s Disease.

Q:  Did these studies slow the progression of PD?  Does this apply to PD?

A:  Different exercises gave different results in the rats’ brains.  In some, the rats were protected from developing PD.  Reduction in symptoms and cell death before the rats were given the PD.  After the rats were given PD, fewer dopamine cells died.

PD – loss of cells in SN that produce dopamine
PSP – weaking of muscles that are controlled by nerve cells that are controlled in the brainstem; this results from tau accumulation in the SN

The medications that treat PD don’t help with PSP.  We don’t know if the effects on the brain of those with PD will be the same on those with PSP.

But it doesn’t hurt to exercise.  Any exercise can be helpful, when done correctly.

Q:  My wife cannot walk by herself.  She cannot push a wheelchair by herself.  What PT can I do?

A:  You already have a great exercise program established.  Without evaluating her, I can’t give specific exercises.

Practice techniques to make the transfers easier to both of you.

Keep working on both cardio and strength training.

Q:  Recent news on PD bikers.  Does this apply to PSP?

A:  We don’t know.

Q:  What is prehabilitation?

A:  When first diagnosed, ask the MD for a referral to PT and OT.  Don’t wait for balance problems.

Q:  Should and can an MSA patient with OH still benefit from PT and what should they be doing?

A:  Absolutely.  OH is a sudden drop in BP when people go from a lying position to a seated position or a seated position to standing.  PT can really help with this.  PT can teach you exercises to pump the blood better.  PT can talk about compression stockings.  PT can help you learn safe ways of moving.

Q:  What about neck mobility?

A:  It depends on the situation.  In PSP, patients can have dystonia so it can drop the neck forward.  Consider botox.

In some, it’s the opposite with patients looking up at the ceiling all the time.  Botox might help with the retrocollis.

Stretch what is tight and strengthen what is weak.

Q:  What specific knowledge about PSP, if any, do you think a PT needs to have to do a stellar job at providing PT to a PSP patient?

A:  Great question!  In school, we might’ve received two minutes of training on atypical parkinsonism disorders.  This is not necessarily a bad thing.  Find a PT who is willing to do some research.  A PT is going to test you — walking, your balance, up and down stairs.  PTs can’t treat the deficit in the brain but they can treat the functional issues.  Are you falling backwards?

We are starting to have people who are specially-trained in PD and atypicals.  See wemove.org for PTs and OTs.

Q:  Problem of restless legs when sleeping.

A:  There is no good PT for this problem.

Q:  Are there any illustrated books available that show the exercises and assistance techniques specific to PSP for the caregiver?

A:  Fabulous question!  We are currently working on getting The Guide re-done.  It will have pictures.  We are also intending to make videos that are downloadable.

There are lots of exercises on the web.  Check with your MD, PT, or OT to be sure they’re safe.

Q:  Is there a catalogue for equipment?

A:  Two good ones:  1800wheelchair.com, sammonspreston.com

Any PT place should have catalogues of equipment.

Q:  How do we locate PTs throughout the US or other countries?

A:  Usually a movement disorder specialist is linked up with specialized therapists.  If you are not with an MDS, check out wemove.org, lsvtglobal.com (LSVT PT/OT or LSVT ST…they are trained in PD and will know some about the atypicals).

In the tri-state area (PA, MD, NJ plus DE), she has recommendations.

European Association Parkinson’s Disease Physio Therapists

Q:  Are ankle or foot weights beneficial or a hindrance for PSP patients?

A:  For balance, this is not helpful.  To strengthen muscles, this is helpful.  Not a great idea to put them on and walk with them.

Q:  How should the caregiver help someone walk?

A:  Often caregiver will stand to the side and put an arm around the back.  Sometimes holding at the elbow is good enough.  Sometimes holding hands is good enough.  This should be practiced together, in front of a PT.

If someone is less stable but isn’t ready for a walker, consider using a gait belt.

Q:  What are some ways to make the home more safe?

A:  Big topic!  You can actually go room through room.  An OT or CAPS certified aging in-place specialist) can evaluate the home.

Q:  Diagnosis of PSP.  The dementia seems to be causing the patient to exclaim they have only a balance problem and not PSP.  How does one overcome the symptoms to convince a patient they have the disease?

A:  Schedule another appointment with the diagnosing neurologist or one of the team members.  Ask for another appointment with the patient and care partner for the purposes of medication.  Seek help also from a social worker, counselor, or cognitive behavioral therapist for the patient.

This is a clinical diagnosis.  Best to find a movement disorder specialist.

Q:  Are there any new methods for treating MSA-C?

A:  Nothing new in the PT realm for MSA-C.

There is a study ongoing at UPenn for Azilect in MSA-P.  See pdtrials.org to learn if the study is happening near you.

There is a 2008 study comparing the cognition of those with MSA-P and MSA-C.  Those with MSA-C have less severe cognitive dysfunction than MSA-P.

Q:  Can you give information about support groups or volunteers that could go in and help people all over the world?

A:  CurePSP, psp.org
Facebook page “Miracles for MSA”
MSA National Support Group, shy-drager.org

Find volunteers through:
* local church or synagogue
* hospitals
* YMCA
* universities with PT, OT, and ST programs
* local clubs (eg, Rotary, Kiwanis)
Medical Education Advisory Board of CurePSP is putting together a series of pamphlets on PSP, CBD, and MSA (three separate booklets).  Information for PTs, OTs, and STs.  These will be available online soon (May).