CBD


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CBD

Postby monica » Fri Oct 16, 2009 10:25 pm

Last year my husband was diagnosed with psp, this year the specialist at Johns Hopkins changed his diagnosis to CBD with speech apraxia and Kinetic limb apraxia. I wasn't surprised, his hand movements are becoming more problematic and I didn't think he had progressive aphasia because he seems to be retaining his words he just needs a lot of time expressing them. I was wondering if anyone had tried alternative medicines like accupuncture. His primary care doctor who isn't too familiar with the disease suggested I should check into it.

Monica
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Postby Robin » Sat Oct 17, 2009 12:04 am

Hi Monica,

I thought one of the MDs last year said your husband had either PSP or CBD. For an atypical case like your husband's, it must be very challenging to make the diagnosis between FTD, PSP, or CBD.

From a recent article* on CBD, the authors note that the aphasia that occurs in CBD is usually the nonfluent type:

"The most common presenting cortical features include apraxia (patients often complain of a 'useless' limb), aphasia (usually nonfluent), parietal lobe sensory signs (agraphesthesia, extinction, astereognosis), frontal dementia, or myoclonus."

You might do a search of past posts on acupuncture or alternative medicine. There are no studies of acupuncture in treating PSP or CBD. I don't see how it can hurt anything but the pocketbook.

Has any of the MDs discussed brain donation with your husband?

Robin


* Current Treatment Options in Neurology. 2009 May;11(3):179-85.
Corticobasal degeneration.
Reich SG, Grill SE.
Univ of Maryland Baltimore
PubMed ID#: 19364452 (see pubmed.gov for abstract)
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Location: USA - Northern CA

Postby monica » Sat Oct 17, 2009 10:59 am

Robin, what are the differences between speech apraxia and primary progressive aphasia? and I didn't want to ask this in front of my husband but how is the prognosis different for CBD rather than PSP.

Everyone wants his brain and he doesn't care so Hopkins will probably get it.

A woman in my early onset dementia support group lost her her 62 year old husband this year after a 9 year battle with what she had been told was FTD. After autopsy it was determined that he had AD. We were all surprised to hear that.

Thanks for your response.

Monica
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Postby Robin » Sat Oct 17, 2009 1:04 pm

Monica,

I'm not a good source of info as to the differences between apraxia of speech and aphasia. You might try wikipedia; they tend to have good explanations of things.

According to the Laura Purcell Verdun webinar, she defined the terms as:

"Apraxia: inconsistency of errors; speech disorder
Oral apraxia: the inability to perform a task upon command
Progressive non-fluent aphasia (PNFA): simplified formation of sentences"

And, she described CBD speech as:
"apraxia of speech and oral apraxia
hypokinetic, spastic dysarthria
often has a component of PNFA
yes-no reversal"

(My notes from that webinar are posted here.)

The prognosis is roughly the same between PSP and CBD. By the way, you are welcome to join us on the CBGD_support Yahoo!Group. There are many more CBDers and CBD caregivers hanging out there.

I have found in the PSP and CBD worlds, if the age of onset is relatively young the person, upon autopsy, has either FTD or AD.

I suggest you ask JH as to how long they take for the neuropathology report. In a recent case I helped make the arrangements for, JH did a body autopsy on a woman and removed the brain to have it sent to Mayo Jax for analysis. The family did it this way because Mayo Jax returns the neuropath report in 6 weeks, and they are actually doing research in PSP, CBD, and AD.

Good luck,
Robin

PS. You seem to like posting on the Back Porch. Note that your posts will be viewed more if they are in the General Discussion area of the Forum. Not everyone checks the Back Porch, as it's really for off-topic items.
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Postby monica » Sat Oct 17, 2009 1:26 pm

Robin thanks for the tip on the CBD support group, I asked to join that group.

Monica
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