Parkinson-Plus Syndromes on emedicine

emedicine, part of Medscape (, is a terrific resource for physicians.  Access if free, though you may have to register for an account.  Many of the articles are understandable by lay people.  The articles are reviewed by MDs and updated periodically.

I like this overview of the “Parkinson-Plus Syndromes”:

This particular overview includes these sections:

* Clues to Diagnosis
* Multiple System Atrophy
* Progressive Supranuclear Palsy
* Parkinsonism-Dementia-ALS Complex
* Corticobasal Ganglionic Degeneration
* Diffuse Lewy Body Disease
* Management of Parkinson-Plus Syndromes

Of course MSA, PSP, CBGD (now called CBD, short for corticobasal degeneration), and DLBD (more often called Dementia with Lewy Bodies) are part of our local support group.

Treating blood pressure, bladder, constipation, etc. – article by Dr. Golbe

Dr. Lawrence Golbe is a movement disorder specialist at Robert Wood Johnson Medical School in NJ.  He is an expert on progressive supranuclear palsy (PSP), and is the head of the CurePSP Science Advisory Board.  In the latest CurePSP ( newsletter, there’s a short article he authored on palliative measures in multiple system atrophy (MSA).  He defines “palliative measures” as those that will “lessen the severity of…symptoms and…improve both the quality and quantity of life.”

Dr. Golbe addresses these symptoms or treatments:
* anti-parkinson treatment
* low blood pressure
* bladder problems
* constipation
* swallowing problems

As many of these symptoms are found in all the disorders within our group (MSA, LBD, PSP, and CBD) – not just MSA – the article may be of interest to everyone.

The full article is copied below.


———————————————————— –> article on page 3

MSA: Palliative Measures
Lawrence I. Golbe, MD, UMDNJ-Robert Wood Johnson Medical School
CurePSP Newsletter
March/April 2012

There is still no cure for MSA nor any way known to slow its progression, but there are many ways to lessen the severity of the symptoms and to improve both the quality and quantity of life. These are called “palliative” measures.

Antiparkinson treatment: Many people with MSA who have stiffness of limbs and slowness of movement find that carbidopa/levodopa, the main drug used for Parkinson’s disease, can help those symptoms. The duration and intensity of the drug’s effect is usually less than in Parkinson’s.

Low blood pressure: There are many ways to treat low blood pressure. If one is taking drugs or limiting salt intake to treat what once was high blood pressure, these measures could be reduced, but only under the supervision of a physician. Drugs that can increase the blood pressure include fludrocortisone (Florinef), midodrine (Pro-Amatine) and pyridostigmine (Mestinon). There are a handful of other drugs that are often worth a try. Non-drug measures include increasing the salt and fluid intake (if there are no heart or kidney problems that would make that risky), elevating the head of the bed by putting six-inch blocks under the legs at that end and using pressure stockings.

Bladder problems: The need to urinate frequently can be reduced by drugs that inhibit the muscle that empties the bladder. These are called “peripherally acting anticholinergics” and are widely advertised in the popular media.

Constipation: This symptom in MSA is treated as in any other setting. It is best to start with a stool softener (docusate; Colace) or a bulk-forming agent (Metamucil).

Swallowing problems: This is best treated by changing one’s habits regarding choice of foods and food textures, chewing technique and swallowing technique. This is best assessed by a trained speech/swallowing pathologist and often guided by an x-ray video of the person swallowing various food textures, called a “modified barium swallow.”

For severe swallowing difficulties that present a high risk of “aspiration” (food going down the wrong pipe into the lungs), a soft rubber tube can be placed through the skin of the abdomen directly into the stomach (“percutaneous endoscopic gastrostomy” or “PEG”). But this step should not be undertaken lightly. If such a technique becomes necessary to prevent aspiration, a careful decision should be reached by the patient, family, physician and other available advisors. They may decide that while the PEG may prolong life, the quality of life at that point in the disease becomes too low.

“The cost of dying: It’s hard to reject care even as costs soar” (SJMN)

San Jose Mercury News author Lisa Krieger has started a wonderful series of articles on “the cost of dying.”  In this initial poignant article, she shares the sad story of her father in the ER and then in the ICU.

Here’s a link to the article:

The cost of dying: It’s hard to reject care even as costs soar
By Lisa M. Krieger
San Jose Mercury News
Posted:   02/05/2012 08:14:05 AM PST

I encourage everyone to read it so that you can learn from Ms. Krieger’s story.  Many of the comments posted are worth reading as well.

At the end of the article, she writes:

“Modern medicine had carried Dad’s body beyond what it could bear. Even the best life is finite.”

In my humble opinion, these were the points in the story where things could have improved:

  • Ms. Krieger could’ve discussed the DNR (do not resuscitate) order with her father early on.  She could have learned if he wanted to have a DNI (do not intubate) order as well.
  • Did she not have her father’s advance care directive? His POLST would have indicated if he wanted to be intubated.
  • Why wasn’t her father placed on hospice right after his fall?
  • Why didn’t Ms. Krieger have the DPOA and DNR documents with her at the hospital?  Or the advance care directive or POLST?

Please have the “advance care” discussions NOW with all of your family members!



Various calculators for estimating prognosis for seniors

The ePrognosis website at UCSF ( has various calculators for determining the prognosis of seniors.  See:

There are four top-level categories, based upon where the patient is — living in the community, living in a nursing home, hospitalized, or outpatients with advanced cancer.

This website is designed for physicians so that they can determine the prognosis and learn communication skills for discussing the prognosis with families.

“Caregiving as a risk factor for mortality” (1999 article)

This email may be of interest to caregivers.

I was trying to find some published data on the percentage of caregivers who die before their care recipients.  Surprisingly, I couldn’t find anything on the Family Caregiver Alliance’s website ( about this but I did find this related statistic:

Researchers know a lot about the effects of caregiving on health and well being. For example, if you are a caregiving spouse between the ages of 66 and 96 and are experiencing mental or emotional strain, you have a risk of dying that is 63 percent higher than that of people your age who are not caregivers. The combination of loss, prolonged stress, the physical demands of caregiving, and the biological vulnerabilities that come with age place you at risk for significant health problems as well as an earlier death.  (From “Taking Care of YOU,” Family Caregiver Alliance)

So I pulled up the reference for that statistic and found that different parts of the 1999 “Caregiver Health Effects Study” were published in various medical journals.  Below, I’ve copied the abstract of the article “Caregiving as a risk factor for mortality.”

One point made in this 1999 article was also made in the “Caregiver Burnout” PBS video:

“Primary care physicians who care for…older adults may be in the best position to identify caregivers at risk. Older married couples should be evaluated as a unit, both in terms of their health status as well as the caregiving demands that exist in the home environment.”


—————————–   (full article available online at no charge)

JAMA. 1999 Dec 15;282(23):2215-9.

Caregiving as a risk factor for mortality: the Caregiver Health Effects Study.

Schulz R, Beach SR.
Department of Psychiatry and University Center for Social & Urban Research, University of Pittsburgh, PA 15260, USA. [email protected]

There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity. Researchers have also suggested that the combination of loss, prolonged distress, the physical demands of caregiving, and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems, leading to increased mortality.

To examine the relationship between caregiving demands among older spousal caregivers and 4-year all-cause mortality, controlling for sociodemographic factors, prevalent clinical disease, and subclinical disease at baseline.

Prospective population-based cohort study, from 1993 through 1998 with an average of 4.5 years of follow-up.

Four US communities

A total of 392 caregivers and 427 noncaregivers aged 66 to 96 years who were living with their spouses.

Four-year mortality, based on level of caregiving: (1) spouse not disabled; (2) spouse disabled and not helping; (3) spouse disabled and helping with no strain reported; or(4) spouse disabled and helping with mental or emotional strain reported.

After 4 years of follow-up, 103 participants (12.6%) died. After adjusting for sociodemographic factors, prevalent disease, and subclinical cardiovascular disease, participants who were providing care and experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls (relative risk [RR], 1.63; 95% confidence interval [CI], 1.00-2.65). Participants who were providing care but not experiencing strain (RR, 1.08; 95 % CI, 0.61-1.90) and those with a disabled spouse who were not providing care (RR, 1.37; 95% CI, 0.73-2.58) did not have elevated adjusted mortality rates relative to the noncaregiving controls.

Our study suggests that being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality among elderly spousal caregivers. Caregivers who report strain associated with caregiving are more likely to die than noncaregiving controls.