“Years Later, No Magic Bullet Against Alzheimer’s Disease”

This a very discouraging article about preventing Alzheimer’s Disease or delaying its progression in today’s New York Times (nytimes.com):


Years Later, No Magic Bullet Against Alzheimer’s Disease
By Gina Kolata
The New York Times
Published: August 28, 2010

My online friend Ed Plowman pointed out that it would’ve been helpful if an update had been provided in the article about the pool of evidence found for genetics in AD.



Obsessive-Compulsive Behavior in PSP

These Japanese researchers studied the “obsessive-compulsive symptoms” (OCS) in PSP. The purpose of their study “is to investigate OCS in PSP in terms of the incidence, clinical features, associations with demography, cognition, and structural and functional imaging, and to propose possible mechanisms behind this specific behavioral psychological symptom of dementia of PSP.”

In the 74 patients studied, 24% had OCS, which the authors consider a “relatively high incidence.” “They were obsessed with daily trifles and physical symptoms among other things.” The authors conclude: “OCS are frequent but under-recognized behavioral and psychological symptoms of dementia in PSP.”

I wonder if other researchers view OCS as a dementia symptom?

You might be wondering about OCD, obsessive compulsive disorder. The authors describe OCD as “another psychiatric disorder that is defined as recurrent and persistent thoughts that are experienced as intrusive and inappropriate and cause marked anxiety or distress.” In the full article, the authors say:

“Although similar, we found some differences between OCD and OCS. Obsessive ideas and compulsive behaviors appear unreasonable and excessive to caregivers and medical staff more than the patient. PSP patients with OCS are more likely to react to obsessions autonomously or in an environmentally-dependent fashion rather than being forced to cope with these unreasonable ideas and harassed with anxiety or conflicts. … Unawareness or anosognosia for these symptoms clearly delineates them from OCD.”

The authors also point out that OCS is different from the delusions or hallucinations that are part of Dementia with Lewy Bodies.

The abstract is copied below.


Dementia & Geriatric Cognitive Disorders. 2010 Aug 26;30(2):179-188. [Epub ahead of print]

Obsessive-Compulsive Behavior as a Symptom of Dementia in Progressive Supranuclear Palsy.

Fukui T, Lee E, Hosoda H, Okita K.
Department of Internal Medicine, Division of Neurology, Showa University Northern Yokohama Hospital, Yokohama, Japan.

Aims: To describe obsessive-compulsive symptoms (OCS) as under-recognized behavioral and psychological symptoms of dementia of progressive supranuclear palsy (PSP) and to discuss possible mechanisms based on MRI and SPECT findings.

Methods: We studied 74 PSP patients. OCS are defined as persistent and unreasonable, but non-delusional/hallucinatory, ideas and behaviors. Demography, cognition, the widths of middle cerebellar peduncles (MCP) and the inter-caudate distances (ICD), both corrected by the intracranial size (MCP and ICD ratios), and changes on voxel-based SPECT were compared between the subgroups with and without OCS. Finally, the predicative power of various factors to OCS was investigated.

Results: We observed OCS in 18 patients (24%). They were obsessed with daily trifles and physical symptoms among other things. OCS was not associated with demography or cognitive levels.

OCS-positive patients had significantly smaller MCP and ICD ratios and showed marked uptake decreases in the orbitofrontal cortex, caudate and thalamus. Relative uptake increases in the cerebellum, specifically the tonsils, were milder in OCS-positive than -negative patients. A smaller right MCP, a smaller ICD ratio and lower uptake increases in the right cerebellar were the significant predictors of OCS.

Conclusions: OCS are frequent but under-recognized behavioral and psychological symptoms of dementia in PSP. Dysfunction of the fronto-caudate-thalamus-cerebellum circuit may be involved.

PubMed ID#: 20798538 (see pubmed.gov for abstract only)

Apathy and sleep disturbance in PSP

In this letter, researchers report on a UK study of behavioral symptoms in 185 patients with PSP.

They found apathy to be the most characteristic behavioral feature. The researchers say: “Our results confirm…the view that the apathetic syndrome in PSP constitutes an independent entity that cannot simply be accounted for by depression.”

And, the researchers found that sleep disturbance is a major problem in PSP. “[Sleep] disturbance which, like motivation, showed a linear increase with disease duration. Unfortunately, the data available did not allow us to explore the nature of the sleep disturbance in more detail.”

The researchers conclude as follows: “The findings are of practical relevance in that care-givers can be reassured that the disease is unlikely to lead to aggressive, challenging, unpredictable or dangerous behaviours, which can be so distressing to those involved in care of bvFTD patients. However, the recognition of apathy as an integral, organically explainable feature of the disease, rather than a sign of rejection or disinterest, might reassure the care-givers and help them to develop better coping strategies.”

There is no abstract. The citation is below.


Journal of Neurology, Neurosurgery & Psychiatry. 2010 Sep;81(9):1057-9.

Behavioural symptoms in progressive supranuclear palsy and frontotemporal dementia.

Bak TH, Crawford LM, Berrios G, Hodges JR.
Prince of Wales Medical Research Institute, Randwick, New South Wales, Australia.

A husband’s perspective on caring for his wife

Though this webinar has “PSP” in the title, this webinar about caring for a person with a neurodegenerative disease is applicable to everyone in our support group. It’s one of the best webinars I’ve heard.

CurePSP has a new approach to its educational webinars. They are no longer live events but are pre-recorded and then posted to psp.org. I received word this morning that a webinar recorded on 6/29/10 has been posted to psp.org:

Topic: Caring for a PSP Patient – The Husband’s Perspective
Presenter: Chris de Brauw (the husband of someone with PSP)
Date: June 29, 2010

[Editor’s note:  this link is no longer working —
http://psporg.presencehost.net/file_download/e6926b2b-842b-4c2f-9968-c7cbf31e3304 ]

This is one of the best webinars I’ve heard because lots of practical information is passed along. And Chris is obviously a loving and devoted husband.

Here are some notes I took during this 60-minute webinar.



Notes taken by Robin Riddle

Topic: Caring for a PSP Patient – The Husband’s Perspective
Presenter: Chris de Brauw (the husband of someone with PSP)
Date: June 29, 2010
CurePSP Webinar

(Mr.) Chris de Brauw and his wife Ann live in Evanston, IL. In his webinar, Chris encourages people not to put off their dreams.

As is typical with so many PSP families, the path to the PSP diagnosis is a long one. In 2004, there were the first signs of something not being right. There were major falls in 2005 on. For two years, Ann was diagnosed by various neurologists as having some type of dementia (vascular dementia, Alzheimer’s, FTD with MND or Lou Gehrig’s Disease, etc). Chris’s father had AD so Chris knew it wasn’t AD. Ann had good balance in the neurologists’ offices but had poor balance at home. A neurosurgeon attributed all the trouble to spinal stenosis and Ann had neck surgery (spinal laminectomy). It appeared for a week that the surgery was helpful but then the falling started again.

Finally, in December 2007, Dr. Tanya Simuni, a movement disorder specialist with Northwestern Memorial Hospital in Chicago, came up with the diagnosis of PSP, which finally gave recognition to Ann’s balance and movement issues. Chris was already thinking that Ann might have PSP. Since that time, the family has received excellent help from NMH, the Rehab Institute of Chicago, and a care agency.

With the PSP diagnosis, finally the family knew how to deal with falls! “Knowing what we are dealing with has enabled us to manage the disease, and maintain some level of sanity. These rare brain diseases need better awareness in the medical community.” It’s critical that neurologists in particular know the diagnostic tools.

A social worker from Northwestern Memorial named Diane Breslow speaks in the webinar as well. Diane is on the CurePSP Board. She says that it’s not unusual for the patient to behave differently in the doctor’s office than at home. It’s important for caregivers to tell the MD what’s going on at home.

Chris notes that the limited research into these diseases is progressing very slowly and in piecemeal fashion, the research “will not benefit us directly. Our reality is that we are dealing with a degenerative, incurable condition that, ultimately, will be terminal. I have to accept this. What I can do and must do is to make this process as positive as possible.” As the Dalai Lama says: “Human suffering is everywhere, but being happy or unhappy remains a personal choice.”

One way to do that is to realize that you can’t do this alone and develop a support system. The support system includes medical and therapeutic support, a therapist for the caregiver, a social worker for the family, day-to-day care support, and family/friends/community.

Diane notes that support groups can be very helpful. Peer-to-peer support is an option. Palliative and hospice care can be very helpful at the appropriate time. There is no one single support that will be the answer. The support system can change over time.

The family’s first social worker was a free-lancer recommended by one of the neurologists. The social worker recommended the family move out of their Victorian home, where Ann kept falling on stairs. Another recommendation was that Ann get a personal trainer. Marla Brodsky, the trainer, has been working with Ann twice a week for nearly four years. They work on (or have worked on) balance, strength, flexibility, swallowing exercises, and walking. Marla is also a nutrition expert.

Friends and family now donate towards Ann having a bouquet of flowers each week.

Chris encourages families to keep going out to the same restaurants and stores. People in the restaurants and stores become helpful again.

Chris’s goals for staying positive:
1. Do whatever I can to keep Ann as well as possible for as long as possible
2. Keep our lives as “normal” as possible
3. Give Ann control over things she can control
4. Blame the disease when things happen
5. Learn to accept help
6. Look for easier, safer solutions
7. Keep people in the loop
8. Slow down
9. Make sure I take care of myself, and our caretakers

For goal #1, this is what they’ve done:
* Moved out of our house, into a condo all on one level
* Ann’s personal trainer
* Never gave up looking for a cause when the diagnoses didn’t add up
* Great diet, fresh foods, and cooking from scratch
* Minimize medications and eliminate things that don’t appear to work. At present, Ann is only on two medications.
* Do as much as possible and get in as much stimulation as possible, but protect her from doing too much

For goal #2, this is what they’ve done:
* Ann shops for food, and directs the cooking
* Sleeps in a regular bed
* Wears normal underwear
* Uses a regular napkin
* Does her email
* Sunday dinner with the kids
* Holiday meals as usual
* Regularly go out to our place in the country
* Visit familiar restaurants, where they know we will be making a mess

For goal #3, Ann controls what we eat, which movie we are going to see, where we eat out, what TV show to watch, when to go to bed, what clothes to wear, whom to invite over, etc.

For goal #4, no matter what happens we try:
* never to get mad at the patient
* say “no big deal”
* have a positive outlook: “never a dull moment” and “where would ‘Shout’ be without us?”
* not to panic when there is blood
* try not to blame anyone (yourself, the patient, anyone) when accidents happen
* we tried to avoid falls, but they still happen

For goal #6, this is a constant quest. As the disease progresses, you are challenged, all the time, with new problems to solve. Equipment they used and recommend: bike helmet; bedside commode that they’ve placed over the toilet; shower chair; UStep walker; lightweight transport chair with brakes at the top by the push handles; custom-built wheelchair that is good for sitting in long periods; balance ball and “balance exerciser”; pedaler for leg and arm exercising; chair cushion; eating using a dish with sides (like a gratin dish); raising the height of the dish (by using a thick book); plastic eye glasses (as the steel-rimmed glasses caused a major facial injury); nighttime rubs (bed-time is a moment for some caring rubs including Tiger Balm and a product called New Skin Scar Therapy).

Forget about installing wall-mounted bars around the toilet. But these bars are useful in the shower.

For goal #7, the family uses email a lot. Remember to recognize and thank people for their efforts and contributions.

For goal #8, Ann’s condition has been a “major lesson” for Chris in how to slow down the pace of things and be more patient. Chris says things to himself like “You have all day.” Chris takes naps to catch up on sleep.

The months and years add up. Chris and the caregiver Regina are getting better at dealing with the constant changes, the stresses and concerns. With Ann’s decreased mobility, the risk of injury from falls has lessened but the physical challenges connected with moving her have increased. The best way to prevent falls is to be very close to Ann. Ann’s decline has been gradual.

For goal #9, to fight stress, Chris takes off for a few days every 4-8 weeks. The hired caregiver Regina takes time off when she needs it. Chris sees a psychiatrist. Talking to the psychiatrist means that Chris doesn’t have to burden his children with his concerns. The family has a night nurse 3-4 nights a week to look after Ann so that Chris can sleep uninterrupted. Chris does yoga, swims, and plays tennis. He also plays chamber music with various groups.

Final thoughts: (note that Chris breaks down while reviewing this list)
* I am her husband and her pal
* I never try to act like a therapist. I leave that role to others
* I give her companionship and she does the same to me
* I try never to lecture her but just talk to her, encourage her, and take care of her
* I dress her, put her to bed, hug and kiss her good night
* I get lots of kisses in return

Diane notes that Chris is, obviously, emotionally connected to Ann. He’s on the same page with her. He’s not jumping ahead 3 months, 6 months, a year into the future. He’s by her side every step of the way. Chris is very open to learning from everyone. They all have something to give, and Chris is open to accepting this information. He also learns from his own experience. (Example: eye glasses.) He’s also a great observer of Ann. (Example: monitoring medication.) Very importantly, Chris takes care of himself. In keeping himself well, Chris is better able to help Ann. Chris has kept his own life, and that’s important.

Chris says to all caregivers:
* This is not easy
* You will be tired
* But if there ever was a time in your life someone needs to be able to depend on you, now is that time
* Find comfort in knowing that you know exactly what is most important: to be there and help and care
* Develop your support system
* It *is* an extraordinary experience — a journey
* Feel free to contact me: [email protected]


“Acupuncture, Real or Fake, Eases Pain”

A short article in yesterday’s New York Times reports on a new study showing that “fake acupuncture appears to work just as well for pain relief as the real thing” in patients with painful knee arthritis. “A 2007 National Health Interview Survey found that an estimated 3.1 million Americans had used acupuncture in the past year. Back pain is the most common reason patients seek acupuncture treatment, followed by joint pain, neck pain, migraines and other forms of recurring pain.”

The article mentions one good resource: the National Center for Complementary and Alternative Medicine. NCCAM is part of NIH. The NCCAM website reviews the research on acupuncture and offers a video lecture on acupuncture that is part of their online education series. See:

Here’s a link to the article:

http://well.blogs.nytimes.com/2010/08/1 … ases-pain/

The New York Times
August 18, 2010, 11:25 AM
Tara Parker-Pope on Health

Acupuncture, Real or Fake, Eases Pain

Ocular Issues – DLB, PSP, CBS

This medical journal article reviews ocular motility issues in aging and dementia, and includes PSP, CBS, and DLB among others (AD, PD, FTLD, CJD).

Here’s a link to the abstract:

Ocular Motility of Aging and Dementia
Pelak VS.
Current Neurology and Neuroscience Reports.
2010 Aug 10. [Epub ahead of print]
PubMed ID#: 20697981

I’ve copied below a few excerpts related to three disorders within Brain Support Network — PSP, CBS, and DLB.


Excerpts from:
Ocular Motility of Aging and Dementia
Pelak VS.
Current Neurology and Neuroscience Reports.
2010 Aug 10. [Epub ahead of print]
PubMed ID#: 20697981

Dementia with Lewy Bodies

Ocular Motility Dysfunction
Systematic study of eye movements in DLB has been very limited. … Reflexive saccades are impaired in DLB, with increased latencies and antisaccades errors. Vertical and horizontal supranuclear palsies are rare but have been described. Balint syndrome may be prominent because of involvement of the biparietal cortex.

Visual Symptoms
Visual hallucinations are the most common visual complaint, but reading difficulties, difficulty focusing, and other visual complaints similar to those in both AD and PD…may occur.

Corticobasal Syndrome

Ocular Motility Dysfunction
The most prominent disturbance is increased saccade latency, which is greater for saccades toward the direction of limb apraxia and correlates with limb apraxia scores. On examination, some patients may use head thrusts to improve horizontal saccades. Convergence insufficiency and a high number of errors on the antisaccade test also may be observed. Vertical and horizontal gaze palsies and/or ocular misalignment may occur, but rarely to the significant extent seen, for example, in PSP.

Visual Symptoms
Patients may report difficulty reading, likely
because of problems moving their eyes from word to word and from line to line in the presence of severely increased saccade latency. If ocular misalignment or convergence insufficiency is present, patients will report diplopia.

Progressive Supranuclear Palsy

Ocular Motility Dysfunction
The diagnostic ocular motility hallmark is
limitation of vertical gaze, usually downgaze
before upgaze. Involvement of horizontal gaze typically follows. Supranuclear gaze palsies may appear months or years after the onset of other neurologic symptoms, and they usually are preceded by marked slowing of voluntary vertical saccades. Horizontal saccades also may be markedly abnormal with decreased saccade amplitude and velocity, whereas latency often is normal. Saccadic gain and smooth pursuit gain are significantly decreased… An increased frequency of square wave jerks is seen in 60% of PSP patients, and these are readily notable during fixation.

Visual Symptoms
Difficulty reading is an especially prominent
complaint because of the downgaze palsy. Diplopia is relatively uncommon because the gaze palsy usually is symmetric. Blurred vision and eye discomfort occur, and these symptoms more likely are related to decreased blink rate and inadequate tear production than to ocular motility disturbances; however, fixation instability and impaired convergence also may contribute.

Lou Gehrig might not have had Lou Gehrig’s disease

This New York Times article is about the idea that Lou Gehrig might not have had Lou Gehrig’s disease. A concussion or brain trauma may’ve caused some other pathology that looks like ALS. Obviously this article points out the need for brain autopsy to know the conclusive diagnosis.

August 17, 2010 Researchers Link Lou Gehrig’s Disease to Brain Trauma By Alan Schwarz New York Times

Loss of self: one aspect of being chronically ill

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.


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.

Reacting to tragedies of others (NYT article)

The author of this article wonders why some close friends disappeared entirely when the author and her family were going through tough times. Here are a few excerpts:

“…[We’ve] come to understand the various ways in which people cope with crisis when it happens to them. But psychologists are just beginning to explore the ways we respond to other people’s traumas.” “…[In] the presence of another’s crisis, there’s always the sense of helplessness.”

“True empathy inspires what sociologists call instrumental aid. “There are any number of tasks to be done, and they’re as personal as your thumbprint,” Dr. Rainer said. If you really want to help a family in crisis, offer to do something specific: drive the carpool, weed the garden, bring a meal, do the laundry, go for a walk.

“The human condition is that traumatic events occur,” said David B. Adams, a psychologist in private practice in Atlanta. “The reality is that we are equipped to deal with them. The challenge that lies before us is quite often more important than the disappointment that surrounds us.”

Here’s a link to the full article:

http://www.nytimes.com/2010/08/17/healt … 7essa.html
August 16, 2010
Coping With Crises Close to Someone Else’s Heart
By Harriet Brown
New York Times

WSJ survey of research into PD and various proteins

A local support group member forwarded me this terrific article in the Wall Street Journal today on cognitive impairment that occurs in Parkinson’s Disease. The article is a high level survey of Parkinson’s-related and protein-related research going on at the University of Washington (Seattle).

The article also talks about Alzheimer’s Disease a fair amount. The protein involved in the “tangles” of Alzheimer’s is tau. This tau protein abnormally accumulates in PSP and CBD.

Here are some excerpts:

* With Alzheimer’s disease, the patient often stops recognizing family. “With Parkinson’s, it’s like the family doesn’t recognize [the patient] anymore,” says Thomas Montine, a neuropathologist…

* Medical experts are increasingly recognizing the disease’s impact on cognition but research has been slow, in part because of the difficulty in sorting out the disease’s movement issues from the cognitive ones…

* One question is whether Parkinson’s patients with cognitive impairment simply have Alzheimer’s as well, or whether the deficits are caused by a different process in the brain.

* In a recent study at the University of Washington, Dr. Montine’s group studied 345 participants who were a mix of healthy volunteers, Parkinson’s patients with cognitive symptoms and those without such symptoms, as well as people with Alzheimer’s. … The data…suggest that classic Alzheimer’s pathology isn’t responsible for the cognitive deficits in most people with Parkinson’s. But the overlap suggests that treatments for Alzheimer’s could potentially be beneficial for Parkinson’s as well, according to Dr. Montine.

* Another question the University of Washington group is examining is whether cognitive decline is linked to low levels of the brain chemical dopamine, or whether it is the due to the loss of the dopaminergic neurons, which makes other substances in addition to dopamine.

* Dr. Montine’s group is also working on figuring out a better way to detect the presence of Lewy bodies. If the clumps could be detected in the blood or brain of a living person by a biological marker on, say, a brain scan or a blood test, the disease could be detected earlier—possibly even before symptoms show up—and its progression could be tracked…

* [Researchers] are studying the spinal fluid of patients who are known to have passed away from Parkinson’s and had Lewy bodies present in the brain. They have collected a list of promising markers—such as a protein called alpha-synuclein—that appear to denote the presence of these deposits. They are getting ready to start testing a way to tag these biomarkers in living patients to see if the presence of these markers in brain scans tracks with the progression of the disease.

Here’s a link to the WSJ article (available for free at present).


http://online.wsj.com/article/SB1000142 … 00790.html

In the Lab
Wall Street Journal
August 10, 2010

How Parkinson’s Alters the Brain
Researchers Trace Clues to the Disease’s Effects on Patients’ Mental Ability
By Shirley S. Wang

[see the graphic on the WSJ website]
http://si.wsj.net/public/resources/imag … 191016.jpg

Diseases of the Brain: Progressive conditions affect the body and mind in different ways

Alzheimer’s symptoms
Cognitive: Memory loss and deterioration in thinking and planning functions
Physical: In mid-stage, disease could include slowness, rigidity and tremors

Inside the brain
The cortex, particularly the hippocampus, key to memory, shrinks.
Ventricles (fluid-filled spaces within the brain) enlarge.
Plaques (amyloid deposits) cluster between neurons.
Tangles (twisted proteins) are found within neurons.

Parkinson’s symptoms
Cognitive: Loss of executive functions, including planning, decision-making and controlling emotions.
Physical: Tremors, stiffness and slowed movements.

Inside the brain
Cells shrink in the substantia nigra, where dopamine is produced.
Lewy bodies (clusters of alpha-synuclein protein) accumulate inside neurons.

Sources: Alzheimer’s Association, Parkinson’s Disease Foundation and helpguide.org