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 Help! New Neurologist says Mom has PSP not LBD 
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Joined: Thu Dec 08, 2011 5:18 pm
Posts: 1
Post Help! New Neurologist says Mom has PSP not LBD
My Mom was diagnosed with LBD about 4 years ago by a Neuro Scientist who performed a long test. She has been being treated for it since.

The day after Thanksgiving she was sent to the hospital from the nursing home because of delirium from a UTI.

After being there for 5 days, they also found a perforation in her bowels. The did not know how bad, or where it was. I was presented with the option for surgery or hospice.

I couldn't live with the fact that it may have been something small, unfortunately it wasnt. Her perforation had happened at the same spot as a previous perforation and it had been leaking a while causing tissue damage. The surgeon had to cut the small intestine off at the stomach and reattach it to a different part of the stomach.

She has recovered somewhat from the surgery but she has been completely out of communication. She is now starting to get real stiff in her joints especially her neck. She is starting to groan and move around like she is uncomfortable.

She has not had any dementia meds for over a week. Now her heart rate is going up and she is struggling to breathe.

The new neurologist tells us she has PSP (Progressive Supernuclear Palsey).

I am afraid her recent troubles are because she is not being treated correctly for the dementia and she may be hallucinating causing high heart rate and breathing issues.

Any experiences?

Thank you so much

Sun Dec 11, 2011 9:34 am

Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3441
Location: Vermont
Post Re: Help! New Neurologist says Mom has PSP not LBD
It sounds like you may want to get her evaluated for hospice. Have you discussed this with her dr.?
There could be, but may not be "correct treatment for dementia." Lynn

Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.

Sun Dec 11, 2011 11:02 am

Joined: Fri Nov 05, 2010 11:30 pm
Posts: 318
Location: southern cali
Post Re: Help! New Neurologist says Mom has PSP not LBD
sending you hugs...

with all in here, about recovery times and problems after surgery..hope that is what is happening and she is feeling better soon...

might look in the search area.. and see if you can get some ideas.. also the meds she was given, could be adding to the problem..???

wishing you both the best..

sole CG for hubby.1st symptoms, 2000, at 55. Diag with AD at 62, LB at 64.. vietnam vet..100% ptsd disability,sprayed with agent orange, which doubled chances for dementia. ER visit 11-13,released to memory care..

Sun Dec 11, 2011 12:24 pm

Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Help! New Neurologist says Mom has PSP not LBD

In our local atypical parkinsonism (DLB, PSP, CBS, MSA) support group, one person with a clinical diagnosis of DLB donated his brain for research upon death. His confirmed diagnosis was PSP (progressive supranuclear palsy). As you may know, a confirmed diagnosis is only possible with a brain autopsy. If that's something you are interested in, there's a separate section of the Forum about that.

Recently, in the local support group, someone who has had a clinical diagnosis of DLB for 3 years (by two well-respected movement disorder specialists) just had the diagnosis changed to PSP based upon eye movement symptoms. So, this change in diagnosis is no surprise.

However, hallucinations are extremely rare in PSP and are an exclusionary criterion. So, if your mother has PSP, hallucinations are likely caused by medication or delirium, as you say.

Unfortunately, dementia medications are of no use whatsoever in PSP. Many neurologists say that between the two disorders, they'd rather be diagnosed with DLB because at least some of the medications can be of benefit and improve quality of life.

Extreme rigidity is a common symptom in PSP. There are lots of things that can be done pharmacologically (Sinemet, Baclofen, Dantrium, botox injections, etc). Massage and range-of-motion exercises can help.

You might consider joining the PSP Forum at The software is the same so you will be familiar with it.

It could be that the heart rate going up and struggling to breathe are indications that your mother is in the final stages of life. Would you consider placing your mom on hospice at this point? Are you her primary caregiver?

Feel free to email me privately as I'm very familiar with both of these disorders.


Sun Dec 11, 2011 5:33 pm
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