Category Archives: LBD

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

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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 (psp.org) 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.

Robin

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https://web.archive.org/web/20120514113101/http://www.psp.org/file_download/b9b6fe18-8ac0-4354-8e23-b35734be1767 –> 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.

“Mind, Mood & Memory” booklet

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This terrific booklet, Parkinson’s Disease: Mind, Mood & Memory, was published several years ago by the National Parkinson Foundation (parkinson.org).  I hand it out to all newcomers to our Lewy Body Dementia caregiver-only support group meetings.  It has a wonderful chapter (five) focused on Dementia with Lewy Bodies.

The booklet makes the important point that there’s a delicate balance between treating psychosis (hallucinations and delusions) and treating parkinsonian motor symptoms.

Here’s a link to it:

www3.parkinson.org/site/DocServer/Mind_Mood_Memory.pdf?docID=191

I hope you value this booklet as much as I do!

Robin

Now 2 Autonomic Dysfunction Specialists in Northern CA

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Finally, there’s a neurologist who is an autonomic specialist in the Bay Area.  His name is Safwan Jaradeh, MD.  He’s at Stanford.  (Neurology appointment phone is 650-723-6469.  New patient appointment phone is 650-725-5792.  New patients will need a referral from a neurologist.)  He used to be at the Medical College of Wisconsin.  A patient’s family who saw him in WI wrote a very positive review of him on POTSplace (www.potsplace.com/physicians.htm).

The only other MD in the Bay Area who sees patients with autonomic dysfunction is a cardiologist named Karen Friday, MD.  She’s at Stanford (Cardiology) and the Palo Alto VA.  A couple of years ago one of our MSA group members was receiving inadequate treatment for OH (orthostatic hypotension) from a movement disorder specialist.  The group member took her husband to see Dr. Friday and was very impressed with the care received.  Also, someone wrote a positive review of her on POTSplace.

Years ago, someone told me:  “Many of the autonomic specialists are cardiologists rather than neurologists, because of the close association between the autonomic system and blood pressure.”

If any of you are dealing with or have dealt with SEVERE symptoms of orthostatic hypotension and you are receiving excellent care for these challenging symptoms from your neurologist, please let me know.  Thus far, I’ve only heard negative stories about neurologists and OH treatment.

Robin

PS. There are three directories of autonomic specialists in the US:

www.potsplace.com/physicians.htm
www.ndrf.org/physicia.htm
www.mc.vanderbilt.edu/gcrc/aas/AAS_referals_by_state.htm#CA

Comparing survival time by dementia type (AD, DLB, FTD, VaD, mixed)

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These Australian researchers reviewed the literature on survival time with Alzheimer’s Disease, mixed dementia, vascular dementia, frontotemporal dementia, and dementia with Lew bodies.

After reading this abstract, I wondered if the Australian authors were native English speakers.  Lots of sentences are hard to understand!

Example:  “Relative loss of life expectancy decreases with age at diagnosis across varying gender….”

I think this means:  The older you are, the lower your relative loss of life expectancy is.  And this was truth whether you are male or female.

Here’s another weirdly worded sentence:  “We found that the impact overall of dying from dementia decreases with increasing age…”

For me, the two key takeaways were:
* there aren’t enough studies in dementia with Lewy bodies to have a good idea as to survival time
* survival time “cannot be predicted accurately”

I think that’s enough about this paper for all of us.  The abstract is copied below.

Robin

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International Psychogeriatrics. 2012 Feb 13:1-12. [Epub ahead of print]

Dementia time to death: a systematic literature review on survival time and years of life lost in people with dementia.

Brodaty H, Seeher K, Gibson L.
Dementia Collaborative Research Centre, University of New South Wales, Sydney, NSW, Australia.

ABSTRACT
Background: Life expectancy with dementia directly influences rates of prevalence and service needs and is a common question posed by families and patients. As well as years of survival, it is useful to consider years of life lost after a diagnosis of dementia.

Methods: We systematically reviewed the literature on mortality and survival with dementia which were compared to estimated life expectancies in the general population. Both were then compared by age (under 65 years vs. 65+ years), gender, dementia type, severity, and two epochs (prior to and after introduction of cholinesterase inhibitors in 1997).

Results: Survival after a diagnosis of dementia varies considerably and depends on numerous factors and their complex interaction. Relative loss of life expectancy decreases with age at diagnosis across varying gender, dementia subtypes (except for frontotemporal dementia and dementia with Lewy bodies), and severity stages. Numerous study deficiencies precluded a meta-analysis of survival in dementia.

Conclusion: Estimates of years of life lost through dementia may be helpful for patients and their families. Recommendations for future research methods are proposed.

PubMed ID#:  2232533  (see pubmed.gov for this abstract only)

Cognitive decline similar in LBD and AD

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Cognitive decline similar in LBD and AD

This is an interesting study of 58 DLB (Dementia with Lewy Bodies) subjects and 100 AD (Alzheimer’s Disease) subjects, followed over a one-year period at 40 European centers. All patients had mild-moderate dementia. The diagnosis required a 123I-FP-CIT (dopamine transporter) SPECT. (There was no autopsy confirmation of the diagnoses.)

The authors state that DLB is associated with “earlier institutionalisation and a higher level of carer distress than are seen in Alzheimer’s disease.”

The authors believe prognosis info is important information for caregivers:

“Awareness of the rate of cognitive decline and also of non-cognitive symptoms can help carers and patients to adjust and plan appropriate lifestyle changes and to make arrangements for the future. This frequently involves making difficult decisions regarding treatment of psychiatric and motor symptoms and utilisation of limited resources available for patients with dementia.”

The authors want to investigate why the prognosis in DLB is worse than in AD. They thought perhaps it was due to a faster cognitive decline in DLB as compared to AD. In fact, they found that there were no significant differences when comparing the rates of decline of cognitive and neuropsychiatric symptoms in DLB and AD. One of the key messages of the article is: “the worse prognosis of DLB is likely to be mediated by neuropsychiatric or other symptoms and not only by cognitive decline.”

I’ve copied the abstract below.

Robin

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BMJ Open. 2012 Feb 8.

Comparison of cognitive decline between dementia with Lewy bodies and Alzheimer’s disease: a cohort study.

Walker Z, McKeith I, Rodda J, Qassem T, Tatsch K, Booij J, Darcourt J, O’Brien J.
Research Department of Mental Health Sciences, University College London, Bloomsbury Campus, London, UK.

Abstract

OBJECTIVES:
Dementia with Lewy bodies (DLB) accounts for 10%-15% of dementia cases at autopsy and has distinct clinical features associated with earlier institutionalisation and a higher level of carer distress than are seen in Alzheimer’s disease (AD). At present, there is on-going debate as to whether DLB is associated with a more rapid cognitive decline than AD. An understanding of the rate of decline of cognitive and non-cognitive symptoms in DLB may help patients and carers to plan for the future.

DESIGN:
In this cohort study, the authors compared 100 AD and 58 DLB subjects at baseline and at 12-month follow-up on cognitive and neuropsychiatric measures.

SETTING:
Patients were recruited from 40 European centres.

PARTICIPANTS:
Subjects with mild-moderate dementia. Diagnosis of DLB or AD required agreement between consensus panel clinical diagnosis and visual rating of 123I-FP-CIT (dopamine transporter) single photon emission computed tomography neuroimaging.

OUTCOME MEASURES:
The Cambridge Cognitive Examination including Mini-Mental State Examination and Neuropsychiatric Inventory (NPI).

RESULTS:
The AD and DLB groups did not differ at baseline in terms of age, gender, Clinical Dementia Rating score and use of cholinesterase inhibitors or memantine. NPI and NPI carer distress scores were statistically significantly higher for DLB subjects at baseline and at follow-up, and there were no differences between AD and DLB in cognitive scores at baseline or at follow-up. There was no significant difference in rate of progression of any of the variables analysed.

CONCLUSIONS:
DLB subjects had more neuropsychiatric features at baseline and at follow-up than AD, but the authors did not find any statistically significant difference in rate of progression between the mild-moderate AD and DLB groups on cognitive or neuropsychiatric measures over a 12-month follow-up period.

PubMed ID#: 22318660 (www.pubmed.gov/ID#22318660)